Driving the Big Black Bus

With a heavy heart...

2011-09-22T00:56:00.002-05:00

I am just so sad. My heart is heavy and I cannot believe that someone whom I loved so dearly could be so mean to my child. If you are going to be a brat to me, that is fine. But lay off my kid. I ask for VERY FEW considerations for my children. I ask that if during dance classes that they need to lie down on the mats out of the way an observe, that they are allowed. I also ask that they be able to drink fluids as needed to prevent dehydration due to their shunt. I warn teachers when there are bad brain days. I explain that the headaches are bad and that their brains are processing slowly. We have a person in our lives who is being quite mean about these things. I have explained that past few weeks that Wednesdays are hard days for Gabe. That I have to wait until his shunt is exhibiting that he has high pressure before I just reset him. Just because he was at the school does not mean that his shunt reset itself. The past 3 weeks it has. It is a pretty consistent trend that I need to, but just to randomly reset his shunt because he was exposed to magnets is not a prudent thing to do.

I am tired of fighting for the few things that I ask for my kids. I am sorry that it takes Gabe too long to drink his water sometimes. I am sorry that his pressure on his brain is so high that he gets easily distracted or that he is sometimes so to respond or react to your command. It is not okay to tell my child that he cannot get a drink of water during "warm ups" when he has already warmed up for 2 previous classes and he is miserable and trying to push through classes. It is not okay for you to make my child feel badly about his health because it is inconvenient to your schedule.

My heart is broken. You are going to school to be a health care professional. Try to be compassionate.

Living with an Invisible Illness

2011-09-22T00:55:00.000-05:00

LIVING WITH AN "INVISIBLE ILLNESS"

by Mary Hastings

written May 2003

While from the outside I may seem normal,

It’s the part that you can’t see,

The constant pain and struggles within,

Are ever so apparent to me.

Although I may wear a smile,

Often times it's covering the tears,

Yet not tears because of sadness,

As it often may appear.

Don’t be too quick to judge though,

Because there is so much more than is known,

What may seem to look like one thing,

Just might turn to prove so wrong.

I may sometimes seem unfriendly,

Or too centered around self,

Because sometimes standing takes all I’ve got,

And there is just no energy left.

Sometimes my words may sound awkward,

My communication may not always convey,

My true inner thoughts and feelings,

Aren’t always expressed by what I say.

You may think that I’m not really listening,

Sometimes my face or speech may not show,

But I do hear every word you say,

I really want you to know.

The information doesn’t always process,

As quickly and as clear,

And sometimes it takes me longer,

To interpret what I hear.

I possibly miss many opportunities,

To offer needed love or support,

Because sometimes it just takes to long,

For my thoughts and words to sort.

So if my actions seem inappropriate,

In the things I say or do,

I hope that you can understand,

That it is not because of you.

There are times I get discouraged,

When forced to accept my inability--

It’s hard to admit my limitations,

And it leaves me feeling so guilty.

Yet every moment is a reminder

As I look all around,

The effort it takes just to get through the day,

Just picking my feet up off the ground.

I am not looking to find pity,

I am just attempting to explain,

That the person that you may often see,

And the real me aren’t exactly the same.

You may not see the peace and joy,

When you look upon my face,

But I know that each day I live,

Is because of God’s amazing grace.

It is hard to always be cheerful,

When the pain is so very real,

And not everyone can comprehend,

The extend of how I feel.

I don’t see it as all bad though,

Although I’d much rather it not be so,

But I know that if I must endure,

God will strengthen me as I go.

It may seem as if I take no pride

In the way that I look or dress,

However, there might be much more going on,

Inside of the big mess.

My home may not be nice and neat,

My bed not always made,

The laundry may not all be done,

And often it makes me ashamed.

But I must only do what I am able,

Each day I have to choose,

What is most important right then,

And the tasks I am able to lose.

All the plans and dreams I once held,

Now don’t seem quite so clear,

Yet I feel a peace within,

As my Lord keeps drawing me near.

To have a chronic illness,

Or a disability that one must bear,

Somehow puts life into perspective,

And helps to make us more aware.

I realize now that each day I live,

Is a gift from God above,

It is hard not to lean on Him,

Or to look to His great love.

I now can fully understand,

On my own, there is nothing I can do,

It is only be faith and prayer,

That I can make it through.

It may seem an exaggeration,

No one can always feel so bad,

But only those who have walked in these shoes,

Can appreciate the battles that I have had.

I see so many people less fortunate than me,

Don’t have to look very far,

There are so many suffering all around,

It doesn’t matter who you are.

Circumstances and illnesses can hit unexpectedly,

And you can never really be prepared,

It may be difficult to understand,

Leaving you vulnerable and feeling scared.

I must constantly guard my thoughts and mind,

As Satan always tries to bring me down,

He wants me to feel hopeless and unworthy,

And turn my smile into a frown.

It is hard not to get depressed,

When I see the burden my family must bare,

The fact I cannot always meet their needs,

No one could be more aware.

There are times I feel like giving up,

When I look too far ahead,

But I know if my loved ones were given the choice,

They would just choose to have me here instead.

There are so many ups and downs,

New challenges each day,

I must strive to keep my eyes on God,

So that I be not led astray.

It would be so difficult to cope,

Without God, my hope would all be gone,

Because through submitting to Him in prayer,

Is when my weaknesses are made strong.

So when you see the way I look,

When my insecurities are in view,

Base who I am on what’s inside,

Not by the things that I can do.

The greatest lesson that I have ever learned,

Is the reason that I am here on earth,

Is not to live for self and gain,

For in these things are not my worth.

God has a purpose for my life,

Although the details I may not see,

He still has it under control,

And is continually watching over me.

Maybe one day I will be well,

And my health He will restore,

But if that is not in God’s will,

I will still praise Him ever more.

If this suffering can bring honor to Him,

I will gladly accept the call,

Because of His great love for me,

He suffered and gave His all.

I have to believe that what I am going through now,

Will somehow work together for good,

And one day it will be revealed,

And all things will be understood.

While I still worry about what you think,

More the example that I may show,

I am learning so much more each day,

And this has really helped me to grow.

Leaving...

2011-04-26T08:38:00.003-05:00

Today I will finish packing, load up my girls stuff and drop them off at Auntie Becca's house. My Mom and Becca will be keeping the girls. It will be a busy week for the girls and my mom and becca. But they always work it out. The best part is that when I get home they always say, "I just don't know how you do it!" That is a pretty awesome thing to hear. :)

Emotionally Gabe has not been doing well. He is not happy that he needs this surgery. It has broken his spirit a wee bit. He is frustrated and just wants this to be over. The hardest part is the fact that he knows that he is going to have to do it again. We do not know how many more surgeries he will need until his brain has enough room to adequately grow. According to his CT from 1.5 weeks ago, the brain had expanded and had nearly filled the cranial vault capacity. While this is good news....the fact that we were only 6 weeks post the end of the distraction process was a bit disheartening. I know that God is in control of this, I just wish we had a more clear answer of how many more surgeries he will need. Pain wise, Gabe's pain is out of control. It is horrible. But he continues to push through. He is an amazing young man.

I am hanging in there. Last night was a rough night. The guilt of leaving the girls was ringing hard in my head. It makes me so sad to leave them. But I have to keep the stiff upper lip and just get through this and make is as easy for the girls as I can. Today will bring tears from Hannah and Fayeth. This is always the hardest part. Even though I am leaving them with Auntie Becca, Hannah is going to clingy to me and sob. I will pry her from me, kiss her and walk away with her crying. My heart breaks every time. Fayeth will cry because Hannah is crying. Lindsay will be strong and be the champion. She will console the girls with Aunt Becca.

I am getting exhausted from this journey. I always have the strength to move forward because of God, but the emotional aspect of this is just so exhausting. I am quite frustrated. 6 surgeries for craniosynostosis. Seriously, he is a single suture with no syndrome. This should not be where we are at. But I thank God that he has given us good doctors, a great hospital, great support staff at the hospital and a marvelous family that will help us through it.

I will try to post updates as often as I can.

95

2011-04-10T00:29:00.001-05:00

A little sad and depression to write....but we were in the hospital 95 days last year. I understand for some that is not a large amount. But for MY family it is. For my small little people that is 3 months. Wow! That is enough to make one very sad. :(

Cranio Surgery #5

2011-04-09T23:41:00.007-05:00

You can read Gabe's journey for his 5th cranio surgery here.

The journey continues

2011-03-31T16:40:00.001-05:00

Cut, Copy and Pasted from Caringbridge..

WEDNESDAY, MARCH 31, 2010 6:24 AM, CDT

Lindsay had another rough night. (this means mommy did too) She has had a lot of vomiting throughout the night. We do not know if this is due to the meningitis or due to the increased pressure or due to both.

Around 4:30am I went to suction Lindsay's mouth and she felt warm to touch. From 4am-4:30am she went from 37.0-39.5 (98.6-103.1). Our nurse called neurosurgery and they think that Lindsay may have pneumonia. (Which now I remember them telling Darren that she vomited as they were putting her under for surgery) So, now we wait to see what happens. Hopefully the antibiotics are working....

I will update later-
Love to all-
Michelle

Wednesday March 30, 2010...

2011-03-31T00:35:00.001-05:00

TUESDAY, MARCH 30, 2010 5:40 PM, CDT

It was a long night and the morning started off long. We were unable to break her cycle of pain. It seems by adding another anti nausea med we broke the cycle of vomiting however she is still extremely nauseated.

She went down for a CT of her head today. They wanted a baseline of what her ventricles look like now to monitor for hydrocephalus. The Neurosurgeon said that since we pulled her shunt this could develop. So we will continue to watch her for increased neuro symptoms.

Her pain is not well controlled. We are trying. After her CT they changed some meds. They changed her to a stronger pain med, started a strong anti-inflammatory and more GI meds. The first dose helped. Whether it helped or if the fact it knocked her out and let her sleep for a bit... but since then she has not received relief from the increased pain meds.

We moved to the 5th floor to a neurosurg bed this afternoon. Since then she has declined. She is having more symptoms of meningitis. Her neck is really stiff and she is not turning her neck and her head pain is horrid. We are in a dark room. She even went so far to tell her nurse that she wanted to die her pain was so bad. So we are waiting to see what neurosurg wants to do.

Yesterday we found out that Linds was growing Gram positive cocci in chain, clusters and pairs. Which infectious disease informed us could mean that she has more than 1 type of bacteria growing. This morning we were informed by the PICU that she was growing Staph Aureus. ID said that we would need to wait the full 72 hours before we could say that was the only thing that she was growing in her CSF. And yes that was what she was growing when we were here last.

I have had some questions about her appendix. Upon doing the ultrasound they found out that it was normal. The abdominal pain was inflammation to her peritoneal caviety. (peritonitis) The abdominal pain is better. The pain is only severe when her abdomen is palpated. So in that respect, that is doing better.

Infectious Disease was just here. We will have a game plan tomorrow after the cultures show sensitivities. We are looking at at least 14 days of antibiotics to treat the meningitis. Anything that we use to treat the meningitis will cover if she has anything in her abdomen (aka abcess). So now we take 1 day at a time.

Again, thank you all for the wonderful emails, messages on facebook and comments here. I have read them to Lindsay and she said: "Thank you so much for loving me!"

Love to all,
Michelle

One year ago...

2011-03-29T12:53:00.003-05:00

Cut and Pasted from caringbridge:

MONDAY, MARCH 29, 2010 12:59 AM, CDT

We made it to Comer and are currently on the 6th floor. We saw Gen Peds, Peds Surgery and Neurosurgery. Everyone has assessed Lyns and she is NPO. Shunt X-rays are done, Shunt tap is done and bloodwork is done. NS has spoken with the attending on call, but he is not overly familiar with Lyns and the thought it would be best to touch base with Dr. Frim. I am very comfortable as one of my favorite residents is on call toni

ght and is

making sure that things happen. There have been some discussions on how it would be best to proceed with Lyns but we have to wait for lab work to return. When they tapped her shunt Lyns has no measureable pressure per Nassir...."Very low pressure". Nassir had to disconnect the manometer and use a syringe to pull some fluid out of her reservoir. He was able to pull fluid...but it never would flow willingly. I have been informed by neurosurgery that we will be moving to Comer 5 tomorrow. Neurosurgery is going to manage her case. I will say that I have received exceptional care on Comer 6. :) We have a kick butt awesome nurse. I know that I am forgetting something...But I am too tired to think straight. Love to all, Michelle

MONDAY, MARCH 29, 2010 4:03 AM, CDT

Good Morning All! At 3:20am Nassir woke me from my much ne

eded rest and my wonderful sweet dreams to inform me that Lindsay was being moved to the PICU. His exact words were more like, "Mrs. Hartman. Good morning. She has bacteria in her CSF." Nassir m

ust have known in the pit of his stomach that something was going on because when he did her shunt tap late last night he chose to shave a section of hair over her reservoir "So there is no question that this is not a contaminated specimen". So as I said, we are being moved to the PICU. When we arrive there they are going to sedate her and pull the abdominal drainage tubing and I assume that they will drain her CSF that way. Nassir said that the rest of the shunt will need to come out and he is not able to pull it in the PICU at bedside, but that we can deal with later in the AM. Right now we need to get her moved and get meds

(ANTIBIOTICS) started. They ideally want to give her Vanco and Rocephin. But if you remember back to February that made her "itch like a dog with fleas" and break out into a rash. So we are trying Ancef (we were on that at home and still itched) and Clindamycin (which she has reacted to the oral meds but we are going to give it a try for now). The PICU fellow has been informed what is going on and I find myself hoping that it is Dr. Dawson. I had issues with her in the past however t

hat was addressed and she is VERY smart. I know that Lindsay will be in good hands if Dr. Dawson is the fellow. (I know Janet.... You probably just fell off your chair.... Now Super D can laugh at you...LOL) Frim is on Holiday until the 12th. They did

speak to him by phone last night. Infectious disease has already been consulted re: meds and I believe that they have already been changed from the ones I wrote above. We are getting ready to move to the PICU. I will update later. Please pray for my little girl!!! Love, Michelle

MONDAY, MARCH 29, 2010 7:45 PM, CDT

It has been a very long day. Lyns was moved to the PICU by 5am. By 6am Nassir was here and ready to remove the shunt tubing from her abdomen and chest and c

onnect it to an external drain. This drained fluid out of her head and into a bad hanging on an IV pole. I even stayed and watched most of what they did. She was completely sedated and she tolerated the procedure well. Peds surgery came and reassessed her and wanted another ultrasound of her abdomen to make sure that she was not having appendicitis also. Lyns abdominal pain came from the infected CSF draining into her abdomen. Her entire peritoneal caviety is inflammed due to it. (aka peritonitis) This is why they h

ad to remove the abdominal drainage tubing asap this morning before any other inflammation could be done. On Lyns CT at our local hospital they thought she had a bad UTI because her bladder was inflamed (they could see this on the CT) Now we know it was due to her infected CSF. By 11am to

day Lyns was taken to the OR to have the rest of her shunt hardware/tubing removed. Unfortunately as I have stated in a previous entry Dr. Frim is on holiday. This did not bode well for Lyns as she had to have one of the other peds neurosurgeon operate on her. She was NOT happy. The Neurosurgeon did not want a drain placed to drain off her CSF since she had so much grown in her CSF and he wanted to make sure that they were able to get this infection straight away. While they were in the OR they placed a PICC line. Yes...we will be goi

ng home on IV antibiotics and NO we are not even talking a date yet. Lyns was out of surgery around 2 and back to the room. She is really uncomfortable and she is getting a boat load of morphine. The head pain and vomiting are crazy and she said her head is going to explode. So now we just hang tight and focus on getting Lyns healthy. Thanks for all the thoughts and prayers. We do appreciate them. Love to all, Michelle

It is so very amazing what a difference a year can make-March 29, 2010...

March 13, 2011

Frustration...

2011-03-24T10:40:00.004-05:00

Before Craniosynostosis Surgery #5

February 6, 2011

6 weeks post op-March 23, 2011

Not overly impressed with the outcome so far. I am very concerned that we will, yet again, see another reconstruction in the more near future than first expected. Just in case I have not said it recently, I am NOT a fan of craniosynostosis

Sleeping Beauty

2011-03-23T00:44:00.002-05:00

I just cannot help but share. In the actual newspaper her picture was 1/2 page. We we very excited for her. :) We are four days out from show day, well 3 if you consider that we are now on Wednesday. The kids are very excited.

Resolutions

2011-01-02T17:43:00.003-06:00

1. Blog 3 times a week. I miss it and it makes me feel better.

2. Get back into exercising and make a life style change. I LOVE exercising and I need to take the time for myself. It teaches my children volumes about taking care of oneself.

3. Be more patience with the children. Self explanatory

4. Stop allowing stupid people to bother me so much. I cannot help it if a person wants to throw 1 pity party after another for themselves. They need mental health help and there is nothing that anyone can do for them until they do that for themselves.

5. Get into a better routine at home!

6. Post a photo on my photo blog 3 times a week. :)

Merry Christmas...Silly Kids....

2010-11-26T23:41:00.002-06:00

This Screams Holiday Cheer! ;)

"Unfriended"

2010-11-22T11:43:00.003-06:00

I (use) to have a friend who was high in the maintenance department. She has a great heart, would pretty much do anything for any one, but was very self centered, poor me and high on drama. Every little thing that would occur over the day was high in the drama field. But like I said, she has a really good heart and that alone was a reason why the drama momma aspects were easy to over look. In the past 3 years my tolerance for drama and BS have seriously become smaller and smaller. I have realized priorities and honestly tried to stop "stressing" over the small stuff. This friend has had many true traumas in her life that really caused me to wonder exactly HOW she could be so drama momma over small things. I started worrying about her mentally. I noticed that she was showing some very significant signs of being very depressed. Her moods were HIGH then they would go LOW and he smallest thing pushed her over the edge repeatedly. In October, after one of her high drama posts, I vented to a friend, then I received an email from another friend that she had just received the "There is nothing more I can do for your chronically ill child" speech. That was the straw that broke the camel's back. I made my facebook status below:

"Michelle W-H really wishes that people would take a few moments to stop, take a deep breath, look around, and then be grateful for the blessings in their life. Because honestly having ones health, a roof over ones head and their loves ones near by are the most important things in the world. Ask the people who do not have it, I am sure they would agree"

Was it at just my "friend", not completely. Did I hope that it rang true in her and helped her to see what a negative nellie she had become, I could always hope. However it was also to me and everyone. It was a reminder to take a moment and appreciate what you HAVE instead of worrying about what you don't have or keeping up the appearances of having a perfect life. Just live your life and be grateful.

However, my "friend" unfriended me. So, I did the mature thing and also deleted her off of my yahoo, ect. :) I let her know that I knew. An email was started between us and I put it out there that I was worried about her mental status. That I felt that she was battling depression. She chose to close the door on that conversation. This "friend" who did not like what I had to say, still stalks my blog and still stalks our caringbridge page, so I have chosen not to update there much.

However, to be honest, since I no longer have to receive her updates, it has been nice not to shake my head and wonder WTF is she thinking. It has been nice to cut her drama from around me. It has made me feel lighter not carrying around her emotional baggage. It has been so very nice.

Lindsay's Holiday Card

2010-11-19T00:44:00.003-06:00

Lindsay was asked to draw a poster for the U of C Comer. Her drawing was selected to be placed on the front of the Comer Holiday Card. She is quite proud!

A blonde sort of day...

2010-10-24T00:48:00.002-05:00

Lindsay is having a unique sort of day. A few funnies from this evening.

Gabe: Lindsay, do you know what Greek Goddess this is?

Lindsay: I think she is Aphrodisiac!

Mommy: Laughs hysterically

While carving pumpkins...

Lindsay to Hannah: I am going to pretend that I am a Neurosurgeon and I am removing my patients guts!

Gramma: Wrong type of surgeon Lindsay. That would be a BIG law suit!

I really do heart her!

Homeschooling....

2010-08-19T20:40:00.009-05:00

...I LOVE IT!

heavy heart

2010-07-15T23:19:00.002-05:00

Tonight my heart is heavy. I am not feeling sorry for myself or Lindsay. I am just tired. Today she was an amazing little person and had her shunt tapped. She was so good and never flinched when she had blood drawn. It was decided that she is in fact reacting to her tubing. The new tubing, the old tubing and the codman valve. UGH! So now we go onto polyurethane tubing which opens its own can of worms. But we are hoping that the polyurethane tubing, because it does not contain silastic will allow her not to reach to it. I am getting a bit fearful that we are never going to find anything that will allow her to be comfortably shunted.

Felt so good...

2010-07-13T01:52:00.002-05:00

After a long break from blogging...It felt so good to blog and to just let it all out. I feel as though a load has been lifted off my chest. :)

I am preparing for a garage sale. The baby clothes that I have not given away are being sorted and ready to be sold. It is amazing to think that I am ready to get rid of everything that I once held so dear. The Moses basket, the pack and plays, high chairs, potty chairs, toys, clothes, strollers, car seats and so forth. I have to admit though, I have a compulsion about buying strollers and car seats. I have more of both than I have children. (Don't worry I still am using boosters-No lectures needed) I am so ready to get rid of all this stuff. Of course, that means that I will now get pregnant. Seriously I do not believe that God would do this to me at this point in time. It just might push my ass right over the edge!

In a week I will be packing up my truck and heading out to discover camp! YEAH! It will be another awesome year!

In Lindsay news... She is doing crappy and gave my mom a scare. We go Thursday to have a shunt tap. So...we will see.

What is a 5 letter bad word that begins with S?

2010-07-12T01:46:00.002-05:00

S-H-U-N-T!

I am very frustrated and tired. I dislike shunts! I dislike that fact that 2 of my children will forever need a shunt to function in their life. I dislike the fact that, yet again, my daughter is reacting to a shunt tubing. We are getting down to the nitty gritty and I am becoming terrified of what will come if we cannot get a shunt for her that she is not allergic to. She HAS to be shunted. She cannot function without her shunt. She will loose vision also, if not shunted.

I have, as gracefully as possible, watched my child go through a revision, wound infection, shunt track infection, PICC line insertion, home IV antibiotics, PICC removal, too numerous allergic reaction and drug sensitivities to list, severe abdominal pain, allergic reaction to her shunt, meningitis, peritonitis, surgery to externalize her shunt, surgery to remove her shunt,picc line, procedures out the wazoo, surgery to replace her shunt, more doctors, more pain, more narcotics, another surgery to change out tubing, skin testing and now again, severe abdominal pain, shunt track pain, neck pain, light sensitivity, severe head pain....and now either allergic to her tubing or brewing an infection.

Which one is worse at this point in time? Meningitis would make her very sick, for all intents and purposes it could be fatal. However we would only be removing her shunt and then eventually replacing it. If she is allergic to it, mark off ANOTHER shunt tubing type and then we are down to 1 tubing.

Where do we go after that? No one knows. At what point is watching your 8 year old child suffer in pain and take narcotics that she should not even know the name of but call tell you her dosages and times...at what point does SHE stop taking the punches? I know that God has a reason for all of this, but seriously God....I am asking you to please show us the end of this path soon. One that has a marvelous outcome for her. Lindsay is honestly one of the most remarkable little girls that I have ever met. She continues to function even though her pain is over the top. Today she did beg to go to the hospital. And I would not give in. They cannot do anything for her there. I pacified her by emailing Frim. Telling him what is going on and our plan is to do a shunt tap and rule out/in if she has an infection.

I am a bit of a bitch. I am so fed up with people's crap whining about a little fleck of a problem. A problem that they make into a huge ass drama mountain. I just want to take my flip flop off and smack them upside their heads and scream...WAKE THE HELL UP!!!! YOUR CHILD IS HEALTHY!!!! SHUT THE HELL UP! But I do not. I listen to their crap, roll my eyes at things they whine about and go on. I am a firm believer that everyone's issues are big to them. Honestly, I am though I realize that this rant says otherwise....But people just need to STOP for 1 minute, reflect and take time to smell the roses. Appreciate what they HAVE instead of whining about what they DON'T have or what they WANT to have. Appreciate that little person in front of you....One day something can happen and who they are at this moment can be snatched away from you.

My vent is done.

Frustration

2010-06-19T09:42:00.002-05:00

I have not blogged much here recently because so much has been going on and I have no clue where to start. I am so frustrated with everything.

February-

Shunt revision, allergic reaction to dermabond, wound infection, shunt track infection, hospital stay, PICC line, more allergic reactions to vanco, ceftriaxone, oxacillin, ancef, clindamycin, at home IV antibiotics, strep throat, dressing changes, another hospital stay.

March-

PICC line removed, worsening of head and belly pain, abd pain, local ER for "strep throat?", admitted for UTI to local hospital, transferred the next day to U of C Comer, shunt tap, blood work, xrays, transfer to PICU, sedated, shunt externalized at bedside, ultrasound, surgery to remove shunt, meningitis, peritonitis, CT Scan, lots of pain, transferred to neuro floor

April-

Lots of pain, nausea, vomiting, CSF leak, hallucinations, 6th cranial nerve palsy, my mom has a heart attack, surgery to replace shunt, allergic reaction to Shunt, allergist, steroids..... and so it goes

May-

A lot of the same

June-

Still more of the same

The same thing is that this is just Lindsay. Life is frustrating and I just need a brief break. :)

Expanding the family...

2010-05-12T01:56:00.002-05:00

Last August Darren and I seriously began discussing expanding our family. We decided the pros and cons and then determined that we needed to make sure that we found just the perfect addition to our family. Last week I found out that if everything goes as planned, we will be adding to our family in mid to late September. :)

A dear friend of ours has an amazing and beautiful English Mastiff (Sirabi) and she was the reason Darren and I began our plans to expand our family. Last week she went into heat and thus the learning curve has begun. I never realized how much work went into breeding a Dog. Our dog growing up, Princess, was the town slut and she was knocked up every time she went into heat. (well maybe NOT every time but it sure as heck did seem like it) She had puppies with "King" and "Corky". Both of which thought that they were the town's Free Stud Service. :) So, now I get to watch the process unravel, and NO! I am not WATCHING THAT PROCESS occur!!! I am so excited. The kids and Darren are so very excited! :) Yeah Us!!!

Oh...and by the way....those of you who thought that I was saying that I was pregnant....Oh...I KNOW who you are (smart asses) HAHA. THAT is not going to happen. I finally realized HOW that occurs and we threw the turkey baster away! :)

A Mother's Lie

2010-05-09T09:11:00.001-05:00

I stole this from a caringbridge page.

Mothers Lie

By Lori Borgman

Expectant Mothers waiting for a newborns arrival say they don't care what sex the baby is.
They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Happy 5th Birthday

2010-05-03T13:21:00.003-05:00

My Sweet baby,

I cannot believe that you are 5. I am not sure where the time has gone. You are such a cute little thing and you have such a mind of your own. You are battling the being a baby and being a big girl. You still want to be THE baby, except when it suits you to be a big girl. You are such a happy little person and you like everyone to be happy around you.

...You love dresses... You ask for them ALL the time. You wear them in the winter and love your summer dresses.

...You despise writing... You still cannot/will not write your name. I believe that you can, but getting you to do it is something else.

...You act as if you cannot identify your numbers, but when I forget "frozen pizza" on the grocery list you sure did quickly point it out. :)

...You tell stories... Like telling Aunt Jane and Karley that Daddy throws Gabe down the stairs and broke his head/arm/leg...whatever body part suits you that day. You also like to tell stories about your travels with Aunt Jane to England and India and how you shopped for ballgowns and danced with Princes and rode on elephants. I think I particularly like the one when you told me that you had your nipple pierced.

...You have your siblings so wrapped around your little finger you do not have to do anything! They baby you and you know how to play it up.

The other day, Lindsay and I were sitting on the bed with the laptop looking at pics of flowers. I was trying to decide if I was going to try my hand at begonia's this year. You have been having a bit of an issue with wearing clothing/panties lately and you were running around the house as "streaking Bare". I told Lindsay, "See this is a Begonia." You stopped running and came back to my doorway. You placed your hands on your little hips and said to me, "Oh Silly Mommy, it is a BA-GINA not a BA-GONIA!!" Of course I could not let this go and I informed you that it was a VA-gina not a BA-gina and that we were actually looking at FLOWERS. You said, "Oh silly mommy, I can call it whatever I want. It is MY bagina!!!" Then you ran off. A few seconds later you were back at my door and you said (as serious as could be) "And technically mommy it is called a LA-BIA it protects my BA-GINA!" How can you argue with that.

I now have to carry a pair of your panties in my car. One day when we were trying to leave for Chicago I went to fasten you in your carseat and I lifted your skirt to fasten the bottom belts and WHOA!!! Holy Moly!!! I was greeted by you pantiless bottom. Had the kids fasten you in, then we would have been in Chicago and you would have had no panties on. *yikes* You informed me that "Panties are optional". Ummm...not when you are wearing a skirt little miss. We have not instituted PANTY CHECK on our way out the door.

You are truly the perfect ending to our family. You complete us and make us laugh the entire time.

The First time I held you

Your are 5!

2010-04-21T02:05:00.008-05:00

The past 3 weeks have been quite the ride. When we left on that Saturday night I never in my right mind thought that we would have the journey that we had.

Tuesday March 23rd

I went to the U of C to speak to a resident panel re: family centered care. It was very powerful and an awesome experience to speak to residents and hopefully impact how they interact and deal with families. I visited some friends and went to pick the kids up at Mom and Pops house. I noted at that time that Lindsay had some red streaking on her chest but I thought I would give it time and see if she had bumped her chest.

We came home and I made dinner. The red streaking did not go away and I noted it in 2 other places.

Back of head and neck

Back of head (redness is located over her hardware)

Her Chest

I sent the pics to Frim. We emailed and decided that she needed to be seen Thursday 3/25.

Thursday March 25th

We headed to Clinic. It was decided by Dr. Frim that she was reacting to her shunt track. In our previous (non-blogged) hospital stay, she had numerous reactions to other meds so we did not question this. Dr. Frim was getting ready to go away for Passover and he said he would make arrangements for Lindsay to see Immunology to get tested for what she is reacting to. Lindsay's chief complaints: Headache, neck pain, light sensitivity, burning along her shunt and feeling like her hardware (valves) were going to push out of the back of her head.

Friday March 26th

We had rehearsals for Cinderella (4/3 & 4/8). Lindsay danced but complained of feeling icky.

Saturday March 27th

Lindsay woke up with severe abdominal pain. Curled up on floor. I made her get ready for dance and go and rehearse. We went to rehearsal and she was complaining of belly pain and headache. During her rehearsal she started crying and had to leave rehearsal and lie down. THIS is not like Lindsay and immediately perked me up. By the time we got home she was running a low grade fever.

As the night progressed she worsened. Nausea started and she was not complaining of severe pain at her belly button and right lower quadrant. That was starting to sound like appendicitis and with a shunt you have to be careful especially if the shunt drains to the abdomen. If the appendix ruptures it will introduce bacteria into her CSF and she would get meningitis. However, the nausea, headache, abdominal pain and low grade fever sounded like the last time she had strep. Since I could not say that it was NOT appendicitis I took her to our local ER.

The became worried that it was her appendix. However the CT was not conclusive and on the CT it showed that her bladder was largely inflamed. The ER dr told me that that only happened with severe bladder infections. We were admitted after the Ped on call and I argued with the ER attending. We felt she could go home.

Sunday March 28th

5am and we FINALLY get a room at the hospital. The ped had told the nurse that she would be in early afternoon and she would discharge us to home. :) This made me happy as we were having my mom's rescheduled Birthday Party. Due to the nausea and not being able to rule out the hot appendix Lindsay was put on clear liquids. The nausea really got bad and Lindsay was acting ok, as long as she did not move. If she moved the abd pain was horrible.

The Ped came in and was not comfortable discharging us. She wanted a surgeon to come in and tell her that it was NOT a hot appendix. So she called in a favor. He walked in, took her history, did his assessment and informed us he did not think that it was appendicitis. He said he felt that there was SOMETHING going on since her lab work had a "Left shift" (meaning that there was an increase in immature WBC cells which can indicate a bacterial infection). Then he told us that he would not operate on her that we would have to be sent out. I agreed with him and explained that since she has a history of anaphylaxis and they did not have a PICU that I would prefer to go to U of C if she needed surgery. The surgeon said that that was a good thing because he was recommending our transfer to Comer. He proceeded to tell us that her shunt tubing ended near the tip of the appendix and that was dangerous because if the appendix burst they were going to have to get that shunt tubing out of her ASAP. OYE!

He called the ped on call and then she called us and told us that she was being transfered. I asked about taking her myself and they said that it was too risky that she was at risk for a ruptured appendix. She got General Pediatrics (Gen Peds) to admit us so we did not have to go through the ER. So, we waited for an ambulance to come and transport us to Comer.

6:30pm the Ambulance arrived and by 7pm we were on the road to Comer and we arrive at Comer at 8:30. By 9pm we were settled in our room on the 6th floor. Gen Peds was there when we arrived and they were reviewing her paper work and told me that there was NO WAY that based on her paperwork did she have appendicitis. However, when they did her assessment, they did not like the way that her abdomen was presenting. They paged Peds Surgery and Peds Neurosurgery.

Since we had a friend in the hospital I already knew who was the resident. It was our favorite resident, Nassir. Looking back now...It was totally God's doing that Nassir was on call. Because had ANY of the other 2nd yr residents been on call I would have NOT allowed them to do any of the following because I do not trust them!

Gen Surgery came up and was just getting ready to start their history when Nassir walked in. Lindsay was visiting with out friend and immediately perked up for Nassir. Seriously, Nassir walks on water in Lindsay's eyes. However I told Nassir that I was tired of this in and out of the hospital crap and they needed to figure out what the heck was going on.

Nassir did the history and Christian (Gen Surg) took notes. Nassir informed me that if Gen Surgery had to open her abd at all that the shunt tubing in her abdomen had to be externalized. I told him about the increase in the headaches, light sensitivity and neck pain. He said he wanted to speak to the Attending. However while he was speaking with the attending he wanted a shunt series (xrays). We went for the xrays at 11pm, returned to our room at 11:30pm. Nassir spoke with the attending and came back to talk to me. Nassir spoke with the attending on call and he wanted Nassir to call Frim while he was still available. He wanted to know how I felt about externalizing Lindsay's shunt. I was confused. I had no clue why all of a sudden they were saying the tubing in her abdomen needed to come out. I asked Nassir if we could instead tap her shunt and go from there. Gen surgery ordered labs and Nassir came back and got prepared to do a shunt tap. Nassir must have had some clue that something big was going on because she shaved a spot of Lindsay's hair over her reservoir so that they could not say that the specimen (CSF) was contaminated. Lindsay was not happy. However Nassir did the tap and when the CSF came out it was green tinged and had red and brown flecks in it. In my mind it never registered that there was something wrong. I mean I KNOW there was...but my brain snuck off for the State of Denial. Nassir had told me that I would be moving to 5th floor in the AM, so I only unpacked the neccesities. By 12:30am we had blood work drawn, xrays done and shunt tap done. Nassir took the CSF and blood to the lab himself.

Monday March 29th

By 1am I had changed into my jammies and made the "bed". The last time I looked at the clock it was 1:15am.

3:15am....

"Mrs. Hart...., Mrs. Hart......"

I open my eyes...

"Good morning! We have to move Lindsay to the PICU. You have a very sick little girl..."

Rub my eyes and think...What the heck did he just say? Why am I dreaming of Nassir and being at Comer...The reality hits me....I AM at Comer.

"What did you say?"

"You have a very sick little girl. She needs to go to the PICU to have her shunt externalized"

Rubs my eyes, sits up, puts my glasses on. "What did you say?"

"Lindsay is a very sick little girl. She has gram positive cocci growing in her CSF. We need to take her to the PICU and externalize her shunt. In the AM I will speak with Dr. Y and ask him if/when we will need to remove the rest of her shunt."

"So, Can this be causing her abd pain?"

"Yes Mrs. Hart.... it is the CAUSE of her abd pain."

"When will be go to the PICU?"

"As soon as ID (infectious disease), Gen Peds, Gen Surgery and Neurosurg can get on the same page and get meds ordered for Lindsay"

By this time my brain was reeling. I knew that there would be no more sleep for me. I got up, put the bed back together, went and got dressed and brushed my teeth. It was 3:30am by then and I was feeling pretty alone. When we left Saturday I never thought that we would be dealing with this. I could not even wrap my head around the fact that she had meningitis. At this point in time I was still calling it, "Bacteria in her CSF". Then I knew I had to make phone calls. I called my mom and told her what was going on. I remember saying to her, "Mom, they keep telling me that she is a really sick little girl". I then called Darren. I called my mom first, incase I could not get a hold of Darren. This way my mom could tell him what was going on since they were coming to Chicago in the AM to bring me a car.

I went back to sit with Lindsay. She was wide awake by this time because everyone kept coming in and I was discussing antibiotic options with ID due to her gazillion allergies. At one point in time I remember just standing in her room and it felt like *I* was on pause and the world was on fast forward around me. At times it was hard to catch my breath. I knew that I could call Tommi (who was on Comer 5 with her daughter) but I did not want to impose on them....and I think that as long as I was alone I did not have to accept that what was going on was real.

By 5am it was time to to head to the PICU. They were ready for her and everything became very real very fast. When we got to PICU the room was full of people. We went through her history and it was then time to sedate her and remove her shunt tubing from her abdomen. I sat in the chair in her room, back in a corner. I could see everything that Nassir was doing. I was asked if I was going to be okay to stay and in a calm way that I have never felt before I told them yes. I watched Nassir open an incision at her clavical (collar bone) and find her shunt tubing and remove it from her body.. A few times she moaned while sedated but nothing horrible. It was rather savage to be doing at bedside. Had it not been my daughter I would have been even up closer checking all this out, but I sat and text messaged Tommi/Karen, messaged Darren a list of things to bring to the hospital. I remember thinking that if they made me leave the room I would have lost it. Soon they were done and her shunt tubing was lying across her chest and connected to an EVD (external drain). She was draining a LOT of CSF.

Gen Surg had asked for an abdominal ultrasound just to make sure that her appendix was not also inflamed. Her appendix looked good. It was smaller than on the CT-probably from removing the shunt tubing and the infected CSF no longer draining into her abd. I ran upstairs to ask Tommi is she wanted to go to ABP for coffee when I got a phone call that they were taking her to the OR. Now, I had not told her she was having surgery yet. I busted ass to get down to her before they told her. She had not yet realized that Frim was gone and that was ok. I was not going to tell her.

11am I informed Lindsay that because of the germs in her CSF that they have to take out all her shunt. That her shunt is making her sick. (She was still pretty loopy from the precedex) She took 1 look at me and completely woke up and said, "I am not having surgery today!!! Dr. Frim is not here!!!" So we had to have a quick discussion that it was not an option to wait 2 weeks for Dr. Frim to come back. Both of us were afraid. Dr. Y has never had to operate on my kids. It was nerve wracking. We went to preop holding and I met Dr. Y. The best way for me to describe him is as an odd little man. He tells me, "In children with PTC, when you remove their shunt they can have a shift in CSF and they can develop hydrocephalus. This causes the ventricals in the brain to get large. This compresses the brain against the skull. She will developed even high ICP and could go into a coma and die." At this point in time, everything was so surreal that all I could do was manage a nervous giggle and walk away. He then came up to me and started questioning me on what brought me to the U of C. He was quite interested in Gabe's craniosynostosis. The NPs decided that while Lindsay was in the OR they would place a PICC line. It came time for Lindsay to go to the OR. I walked her to the red line. There were tears (from her) and then I stood at the line as they took her away.

Tommi came to sit with me. I went to the lobby. I needed to get out of that horrible waiting room. We found the admissions clerk and she got our papers signed. Then we went back to the OR waiting room. Finally we were told that she was going back to the PICU. The PICC line took longer and more attempts than anticipated. Around that same time, my mom, the kids and Darren arrived. It was nice to see them and get settled.

After getting her settled in the PICU we were able to see her. Lindsay was in isolation so we had to get into gloves and gowns. Gabe and Hannah got really hot really quickly, but they still enjoyed seeing Lindsay. As well as Lindsay was so happy to see her "Honey and Bubby".

Honey & Bubby

As the evening progressed Lindsay started to decline. Other Veteran Moms had warned me that it would get worse before it got better. And they were right. By 10pm, all lights were off but the TV was on low. She was asking for narcotics every 90 minutes and could only have them every 3 hours. Our wonderful nurse help keep Lindsay as comfortable as we could.

Tuesday March 30th

The morning started with a trip to CT for a baseline CT Scan. You now just incase she developed Hydrocephalus and went into a coma and died. (Rolls eyes). It is quite a production to take a PICU patient anywhere. They have to take a "bag" with code meds, all the monitors, a nurse and a partridge in a pear tree ;) Well...that is what it seemed like. As we were heading out to get her CT we realized just then how much the light was bothering Lindsay. The blanket went over her head. She was very uncomfortable because she could not have narcotics yet, then moving her around, the pressure building in her head, she was very weepy. She kept asking, "Why are you torturing me?"

When we arrived at CT, it is very bright down there and she about came off the table. The CT Tech was not the most patient thing and Lindsay was less than happy about having to move. The 2 drs that I have had issues with in the past were in sedation and immediately jumped in to help get Lindsay as comfortable as possible. The CT was very quick and we got to move her back to her bed again. She was quite happy when we got back to the room because it was quiet but she was so miserable and hurt so badly. I was not as happy. I very firmly told my wonderful nurse that I wanted to speak to someone about pain control ASAP and if I did not see someone within the next 5 minutes that I was going to have the director of the PICU and a patient advocate in my room. Lindsay had been itching all night long. (Come to find out she is allergic to morphine)

The Neurosurg NP changed orders in the computer and came to see me 30 minutes later. I was okay as they changed the orders. We discussed properly managing Lindsay's pain. We were being moved to the neuroscience floor as soon as they got a bed.

By 2pm we were going to Comer 5. We got settled and that is when all hell broke loose for Lindsay. Until that time she had vomited but it had been minimal. Now it was not. She was vomiting a LOT and the pain was crazy bad. ALL lights and noises were to be turned off. The Shades and blinds were pulled, the room curtain was pulled, the door to the room was closed, the IV pumps were turned away from her (and they were still too bright). She was receiving some sort of med every hour. Nothing was controlling the vomiting and nothing was controlling the pain. She was sobbing. It was rough.

Wednesday March 31st

As bad as Tuesday was, Wednesday was worse. ALL night long Lindsay vomited or dry heaved. Our poor nurse worked so hard. It was discussed moving her back to the PICU since she needed so much care. I honestly think at that point in time I would have been okay with that. All night long she begged and begged for more pain meds. No one was comfortable increasing her meds much more or changing anything since she has such a large list of allergies and sensitivities. Then we also have this little issue with anaphylaxis.

By 4:30am Lindsay was running a 103.1 temp. Nursing paged neurosurgery and labs and xrays were ordered. Lindsay had vomited twice while they were intubating her/was intubated. So they wanted to make sure that she had not aspirated and developed pneumonia.

6:45am Neurosurg made rounds and felt the need to call in Peds Surgery to assess the severity of the abd pain. The thought process was that she developed an abscess in her abdomen from the infected CSF.

12pm Ped Surgery came to assess her. They want more abd xrays ordered. Lindsay has done nothing but sleep. She will wake long enough to cry for pain meds then she sleeps. It is not a restful sleep. But she sleeps. We are still IN the DARK. VERY DARK. As DARK AS I CAN MAKE IT.

4pm We head to Xray. Lindsay is hysterical as we are making her ride in a wheelchair. It took forever to get the xrays and she had to stand for 1. She can barley stand she is so weak. It was horrible. She was so upset and in so much pain by the time we got back to the room.

5:30pm Infectious Disease came in. A resident from the Resident panel that I spoke with was there. We found out that she did NOT have MRSA, that she had MSSA. :) They opted to change her antibiotics to oxacillin. Lindsay is allergic to/sensitive to Oxacillin. So we discussed the options and ID and myself came up with a plan. It was a well written thought out plan and stated if XYZ happened to do this, ect. She would be pre medicated with IV benadryl before each dosage of Oxacillin.

Darren was able to come up for a few hours after work today. It was nice to have him there so I could rest. I also went back to the RMH for dinner.

Thursday April 1st

We are still in THE CAVE as I call it. She rarely even interacts with me. All she does is cry for pain meds. By now everyone is stumped. We do not know how to make her feel better. No one knows if she is miserable from the meningitis, the peritonitis or it is increased intracranial pressure. The meningitis and increased ICP had a lot of the same symptoms. Lindsay vomited, cried for meds and slept all day.

Our very wonderful Nurse Nichole evaluated the amount of narcotics that Lindsay was taking and she intervened with neurosurgery and asked for a PCA for her to control her pain. They gave her a PCA and as soon as they were able to get it up and running Lindsay was happier with the outcome. The meds did not take the pain away but it took a smidge of pain away. Lindsay described it as going from a 10 to a 9.99. But if it gave her ANY amount of comfort...I was for it.

around 7pm we noted that Lindsay had an internal CSF leak. It was large and growing.

Friday April 2nd

Today we got good news. The antibiotics are working and the infection is under control. However my favorite resident said the H word (Home) and I became a bit focused on that. So those of you who know me, that means that I crashed and burned at 1 point during the day. Lindsay vomited and it was enough to push both of us over the edge. I asked the nurse to page Neurosurgery. The CLS came in and was spending time with Lindsay when the NP came. We had a long talk and while the bacteria from the infection was under control the meninges, her abdomen and everything else needs to heal and that can take days more. She assured me that we were where we should be in re: to her recovery. I told the NP that Lindsay looked worse than she did before surgery and the NP said she knew that. So we changed her PCA to allow her more doses of the narcotic and changed some of her antinausea meds. The NP spoke with one of the hem/oc NPs and they tried Lindsay on the same combo of antinausea meds that they have kids who are on chemo on. There thought was perhaps it would help Lindsay.

Saturday April 3rd

We should have been in Michigan City preparing for our Outreach Program of Cinderella. Instead, Gabe and Hannah were at my moms and Fayeth was at my Aunt Jane's and I was in Comer with Lindsay. I week ago I took Lindsay to the ER for what I thought was most likely strep throat, but maybe appendicitis. Wow! Has this been a ride.

We are STILL in a dark and quiet room. The text messages on my phone push Lindsay over the edge pain wise. She is not talking much, she is in a ton of pain. It is hard to watch her like this. Today she has not vomited. This is a small victory.

Sunday April 4th

The Easter Bunny came today. He actually came TWICE!

Lindsay and the Easter Bunny

Lindsay was in good spirits this morning. When the nurse came in Lindsay was looking through her name badge and all the stuff she has attached to it. (Our nurses have their name badges attached to laynards) She kept asking Emily where the other picture was and Lindsay kept flipping through the badges.

At breakfast, she asked me... "Mommy were there 2 people here delivering my tray?" I replied, "No sis, there was only 1." She informed me, "No mommy, I saw 2." Emily came in right after that to give Lindsay meds. I informed Emily what was said and then a light bulb went off. She informed me of what Lindsay said. Emily assessed the eye issue and Lindsay was having double vision.

When the on call Neurosurgeon came in he again evaluated Lindsay and it was decided that she was exhibiting vertical double vision. After a lengthy eval we decided to watch and wait and perhaps an MRI or CT would be ordered as well as a visit from Neuro-OPthamology.

She allowed us to turn the TV on softly (no lights though). She only wanted to eat 1 piece of candy. I would have allowed her to eat the entire basket if she felt up to it. I went back to the RMH for dinner. Darren stayed with Lindsay. By the time I got back she needed the lights out and her head was killing her. However no vomiting today. This was almost 48 hours since she vomited. Her CSF leak gets larger.

Monday April 5th

Still complains of double vision, NP does not think that she has double vision. Vomiting is back and bad. Still has bad pain, the good news...her large CSF leak is gone. Not sure where...but it is NOT on the back of her head. Yeah??? She is sleeping about 24 hours a day waking long enough to push her button. The NPs are not happy with the way she looks.

Tuesday April 6th

1:00am Lindsay's left eye is not working. When she looks to the left it does not move. Nurse is paging neurosurg to let them know.

6am I wake up to, "Wow mommy! My room looks like Mario world." (She is hallucinating) Hannah was shaped like a grumpet, Fayeth a mushroom, we had palm trees and 6' talking bear in our room.

8am Spoke with Nassir. Lindsay will be seeing neuro-ophthalmology and having a CT scan.

9:15am I was informed that my mom was on her way to the hospital by ambulance. They think she had a heart attack.

1pm Neuro Ophthalmology came. She hasa 6th cranial nerve palsy. They will check her after her CT to see if she has papilledema.

1:45 CT of her head done

2pm back to room. Neuro Ophthalmology checked the optic nerve. No papilledema noted.

5pm Nassir informs me that Lindsay will be going to the OR tomorrow to have a lumbar drain placed to reduce the pressure in her head. This will hopefully help the 6th nerve palsy.

My mom had angioplasty and an angiogram. They cleared the 1 blockage and placed a stint. She is stable but guarded in the ICU.

Wednesday April 7th

It was decided that Lindsay also needs an MRI before they place the drain. She went to sedation around noon. They sedated her and she went to sleep. 5 minutes into her MRI Nassir calls me. Dr. Y decided that it is just too risky to put a drain in her. They will do an LP to check her pressure and check her CSF. I was mad. An LP only buys a short period of time.

LP was done and her pressure was 31 on the max dosage of IV diamox. (Dr. Y said it was 38, but I am going with what the NP said). MRI looked okay.

By the time we got back to the room I was about to strangle someone. The NP promised me that Frim was coming into the hospital on Thursday and that she would ensure that I would see him before he left.

Thursday April 8th

I am assured that Frim will see us before noon. Lindsay is back on the OR schedule for Friday to have a drain placed.

11:55am I see Frim. LONG TALK. Going to the OR Friday to have her shunt replaced.

Shunt Revision....

2010-02-13T00:56:00.002-06:00

We survived the dreaded shunt revision... Just a second to cheer...YEAH ME!!! I held it together and did not strangle the residents. That took some serious control! :)

We arrived at Comer waiting at 11am and Lindsay started to loose it. Stress. A very nice girl saw Chrissa (Lindsay's AG Doll) and asked her about it. She quickly de-stressed Lindsay. When we got back to the room, Lindsay lost it. Had to sit on my lap, cried many tears, "I don't want to do this but I want to feel better". We finally got her into a gown and they brought a gurney into the room instead of the recliner and let her lay down. Her freak out caused her pressure to go up and her headache was through the roof, then we waited....

11:30am...still waiting...

12 Noon....still waiting...(did I mention that her surgery was "suppose" to begin at 12:30pm)

12:30pm....Still waiting....

1pm...Neurosurgery Resident Arrives...We will call him Dr. Bozo....

Enters Room...

Dr. Bozo: I am Dr Bozo! I am going to shave your hair right here (pointing to the TOP right hand side of Lindsay's head) to revise your VP SHUNT.

Lindsay and I: <> Umm...Foramen Magnum Shunt...

Dr. Bozo: "LP SHUNT?"

Me: Foramen Magnum to peritoneal shunt

Dr. Bozo: VP?

Me: F-O-R-A-M-E-N M-A-G-N-U-M Shunt...

Dr. Bozo: "Are you sure?"

Me: "Yep... her hardware is here. FORAMEN MAGNUM SHUNT....."

1:20pm Anesthesia Resident arrives... We being to discuss THE ALLERGY.

Anesthesia Resident: "Well if we need to give her a little to place her ET (endotracheal tube) for surgery..." I very bluntly interrupted her...

Me: "No PARALYTICS"

Anesthesia Resident: "Well if we need to give her just a little bit...." (again interrupted by me)

Me: "NO PARALYTICS!"

Anesthesia Resident: "Well to place her ET tube..." (again FIRMLY INTERRUPTED BY ME)

Me: "NO PARALYTICS. SHE IS NOT TO RECEIVE ANY PARALYTICS AT ALL WHATSOEVER!!! She went into ANAPHYLACTIC SHOCK on the OR Table and we COULD have lost her!!!!"

Anesthesia Resident: "It would only be a little bit...."

Me: "NO PARALYTICS!!!! Do you UNDERSTAND that if I find out that she was giving a paralytic there will be BIG TROUBLE!!! I received the WORST phone call of my life a year ago and we ARE NOT going to have a repeat of that!!!"

Anesthesia Resident: "It would only be a SMALL AMOUNT!!!"

Me: "WHO IS YOUR ATTENDING...GET HER NOW!!!!!"

I showed great restraint in NOT pulling her head off her shoulders and shoving it up her back end!!!

The attending arrived and after I firmly informed her that NO paralytics would be used and Dr. Frim also agreed the anesthesiologist very eagerly agreed that "Of course the would not use a paralytic" and everyone was happy.

I will say I nearly canceled surgery feeling this was a sign that God was telling me NOT to do surgery and I nearly asked to go back to the OR until she was put under. But I could not bring myself to tell them I was going back. I was so afraid that if I went back something would happen and I would see it happen to her. It is bad enough to have to imagine her reaction....but to witness it... It makes me want to vomit a bit.

We arrived at the red lines and hugs and kisses and I Love You's were exchanged. I bravely watched as she walked away with Tracy (CLS) and Gary (the nurse).

Surgery went well, she was out in 2 hours, we spent 2 hours in recovery and after the PACU nurse thinking she was leaking CSF we were transfered to the 5th floor.

We arrived at 6pm, she went to the potty at 7:30pm after morphine and Zofran. She ate and then proceeded to ask for morphine ever 2 hours. (she could only have it every 3 as needed for pain)

She slept for 3 hours, and another neurosurgery resident woke her up at 11pm and Linds proceeded to be up until 5:30am Thursday morning.

2 of the NPs and 1 Resident came in at 645am and told us we could go home.

After a trip to the playroom we were discharged to the RMH....

Deja Vu.....

2010-02-10T01:22:00.002-06:00

February 8, 2009 found me driving to Chicago to the RMH to prepare for Lindsay surgery.

February 9, 2009 was a scary day for us.

Lindsay was scheduled for surgery February 10, 2010. At first I was going to go to the RMH on February 9th, but at a later date opted to just come up on the 10th. However this silly snow storm changed that and on February 8, 2010 I found myself taking the same route I took a year ago. We are in the same room we were a year ago.

Today it was hard not to want to wrap her up in bubble wrap to make her safe.

Tomorrow I will be sending her back to the OR. This time I will be by myself when she goes. I sort of think it will be easier this way.

Lindsay-becca.... I love you baby. Remember God is with you always...

Gabe-post Cranial Expansion #4

2010-02-04T00:45:00.003-06:00

Friday will be 4 months status post Gabe's 4th Craniosynostosis surgery. Of course this is the child that should have only needed 1 surgery. Yep... That is him. :)

Gabe-May 2009 1 month before Craniosurgery #2

Gabe-October 2009 14.5 weeks status post 3rd cranio surgery. Going in for Cranio surgery #4 this day. You can see the "lump" just in his hairline and how is sinks down. This was 1 place where his skull collapsed.

Gabe-January 29, 2010. Almost 4 months status post 4th Cranio surgery.

Don't let the above picture fool you. We still have Good Days, Bad Days and Horrible days. Our bad days are now so manageable that we still consider them Good Days. We have horrible days weekly, but our Good Days out number our horrible days. THAT is success. I have noticed that Gabe is more sensitive to barometric pressure changes. And he seems to be accomodating to a low pressure much more quickly than before. But we have a ways to go before we are bottomed out on our shunt. We do know that he will need at least 1 more surgery. We will go as long as we can before doing it again. We had an MRI a couple weeks ago. Things look good in his skull. However his brain GREW another 130 cubic millimeters. At this age the brain should not be growing. Things are cramped a bit in his skull, but this is not the time to worry about it.

We are taking the time to appreciate our Luck. Dr. Frim told us going into Gabe's Surgery in June that there was no documentation to show how Gabe would respond to his head being made bigger. He was pretty sure that we were going to make him worse. He was honest with us and told us that. He said if we chose to make his head bigger that it would be a Leap Of Faith. I am so grateful that Dr. Frim was up to the challenge to take that Leap of Faith.

I have my little boy back. He runs and plays and *I* nearly have a heart attack when he almost bumps his head on anything (since we still have huge holes in his skull). It is so nice to be able to talk to him and have him remember what we spoke about. It is nice to not to have to feel like living with Gabe is like 50 first dates or ground hogs day. We still have those days when his pressure is high, but it is not every day. He still has neuropathy and we use a wheelchair when we have to do any significant walking or standing. But he is outside living again.

I have come to accept that fact that MY normal is not other people's normal. I have come to accept the fact that Gabe will always have some degree of pain, but when we can manage that pain with Tylenol or Motrin and not methadone, loratab and antidepressants (used for nerve pain) that we have improved. Gabe will never be allowed to play football or soccer. We will always have a shunt and chiari symptoms. We will need another 1 (or more) cranio surgeries and that is all a fact of life. I have to embrace that. This is the journey that we are on. I am not sure why we are on this journey, but it is not mine to question. God has given me the strength to get through the dark times when I "just know" I could not get through them. He has put people in my life to help me walk this journey.

My amazing children walk through this journey, not knowing any better and accepting what they have been given. They are strong and brave. They push through and survive and succeed at whatever they set their minds to. They might have more pain when it is over or it might take them longer because they have to stop to rest... But I look at them and realize that somehow along the way, they have learned to be strong, graceful and brave. I do not believe that I can take credit for that. God must have come to them and touched them while they slept to teach them this lesson. It is a lesson that I and so many others struggle with.

I am so blessed. We are all so blessed. We have our children to hold onto and hug.

Gramma and the boy....

2010-01-25T23:58:00.002-06:00

My mom took Gabe to ST and OT today. The OT came to talk to my mom about how conscientious Gabe is and my mom shared the story with the OT that Gabe comes by it honestly since his mom would stay in at recess to make sure that her work was done completely and correctly.

Gabe: My mom went to school here?

Gramma: Yes Gabe. So did Auntie Becca and Uncle Bill.

Gabe: Wow! That is an old school!

Gramma: Even (Great) Aunt Paula went to school there.

Gabe: WOW!!!! That is a R-E-A-L-L-Y OLD SCHOOL!!!!

Photo 365

2010-01-25T23:55:00.002-06:00

I started a new blog for the photo a day for 365 days... Visit me here... www.justcallmeafollower.blogspot.com

2009 in Review

2009-12-30T14:00:00.000-06:00

2009 has been a fun and exciting year. A year full of trials and tribulations. We have come through the year pretty much unscathed. Our family has become stronger and better for our journey.

January-
We rang in the new year with my mom. It was our annual fun party that we have finger foods and munchies.

Lindsay donates 50,000+ soda tops bringing her total to 87,872 soda tops.

January 17th the kids auditioned for Coppelia. Gabe was a Soldier Doll, Hannah was a Green Baby Doll and Lindsay was a Floppy Clown Doll.

Lindsay was scheduled for surgery on January 19th to have a foramen magnum-peritoneal shunt placed. That morning we got a call that Dr. Frim had food posioning and we had to cancel surgery. Later that day it was rescheduled for January 21st. The 20th it was canceled for the 21st. It was rescheduled 4 more times before it was set on February 9th.

January 28th, Lindsay and Gabe both turned 7 years old. We did breakfast brunch with Gramma & Grampa, Auntie Becca and Uncle Tom, Auntie Jane, Uncle Bill and Karley. It was a marvelous day.

February
We started the month with the annual Superbowl Party at our house. We had lots of fun with Aunt Becca & Uncle Tom, Uncle Bill & Aunt Missy, Gramma & Grampa, Billy, Eli and Leila. We had great soups and appetizers.

In February Lindsay also got her Beads of Courage up to date. Beads of Courage is a program that was developed to give chronically ill children a visible way to see what they have gone through. Each bead represents something that the child has gone through. Whether it be an IV stick or MRI or Shunt Tap. One of the AMAZING child life specialist at the U of C worked to help develop a program for the neuroscience kids. Lindsay and Gabe LOVE their beads. It is a way to tell their "story" without having to get out a notebook.

February 9th we arrived at the University of Chicago Comer Children's Hospital to have Lindsay's foramen magnum-peritoneal shunt placed and goes into ANAPHYLACTIC SHOCK on the operating table. She goes to the PICU for observation while receiving her epi drip to sustain her breathing and blood pressure. You can read about that HERE or HERE.

February 10th she got MORE beads.

February 23rd Gabe saw the Plastic Surgeon and it was decided that SOMETHING needed to be done to make Gabe more comfortable. Dr. McKinnon would discuss that with Dr. Frim and they would get back to me.

February 25th Darren and I took Lindsay to see the immunologist to decide how we would go about doing her surgery. He was a nice man, but he eluded to Lindsay that her "reaction" as we had called it was actually much worse that she was told by us. On the way home she said, "Mommy, Daddy....Did I almost died?" Eeeks... We told her would would discuss it at lunch and while we were having lunch we had a long conversation. I spoke with Shannon and surgery was set for March 2nd. She was THE only case that day.

Later that night, we celebrated my mom's 56th birthday.
Grampa was a slob. LOL

Lindsay continued to suffer and continued to have ill effects from the anaphylactic shock episode.

February 29th, Lindsay and Gabe and the rest of the Grease Performers performed at Leap Into the Arts.

March
Lindsay went back to the OR again. She was having her foramen magnum-peritoneal shunt placed. This time there would be no paralytic given since that is what she is allergic to. God Blessed us and my mom was with us the day of the surgery.
At the RMH

A little nervous and anxious waiting to go to the OR

Daddy did what he does best during surgery...Sleeps

In the PICU after surgery

On March 4th Lindsay got to meet Ronald McDonald. Normally he does not go to patient rooms but thanks to Mardelle and Lexi from Child Life, Ronald came to Lindsay's room to meet her.

Thursday March 5th we got discharged from the Hospital.

March 10th
Hannah and Fayeth continue to dance...

March 26th Lindsay and Gabe got more beads

March 26th, Lindsay got to meet Jaelyn for the first time. She is a little girl...JUST LIKE HER! Which is very rare to have 2-7 year old females with PTC.

March 28th and 29th Gabe and Hannah performed in the Crown Point production of Coppelia.

March 31st, after a phone call with Dr. Frim, it was decided that Gabe needed surgery to make his head bigger. You can read about that here.

April

4/2 Lindsay develops an allergic reaction on her head to the dermabond that was used to close her incision. We watch her head to monitor for her incision in case it opens up.

4/3 Dr. Frim still working on the details for Gabe's 3rd cranial expansion.

4/7 Told that Dr. McKinnon was having issues getting day privileges for surgery. I emailed the Chief of Surgery pleading our case on why we needed Dr. McKinnon.

4/11 Spoke with Chief of Surgery and approval was given for Dr. McKinnon to have day privileges.

We also dyed Easter Eggs

4/12 We had Easter at Gramma's.

4/16 Spring Ballet Production of Coppelia.

May

5/1 We finally got surgery date for Gabe's surgery. June 24th

5/3 Fayeth turns 4!!!!

5/5 Gabe has fallen a lot, Has increased symptoms. Developed left sides weakness and eye issues

5/6 Saw opthamologist. Gabe diagnosed with Central Scotoma.

Came home and began working on playset with Gramma & Grampa.

5/7 Completed Playset.

5/12 Hannah tries her hand at cutting hair!

5/12-14 At RMH visited with Friends. Fayeth had MRI then Clinic visit with Dr. Frim. Her chiari had herniated further she has a dilated central canal. She needs a sleep study to rule out nocturnal seizures. We also discussed Gabe's surgery.

5/20 Gabe continues to decline, others doing okay.

5/24 Fayeth breaks her right leg trying to coax Gabe into letting her give him a piggy back ride.

5/25 Lindsay, Gabe & Fayeth's birthday party. It is COLD! Gabe, Fayeth and I leave for RMH

5/26 Gabe has MRI, 3D CT and Shunt Tap. We found out Gabe developed a syrinx

5/27 Fayeth has orthosurgeon appt. We do NOT need surgery. She gets a baby blue long legged cast.

5/30&31 Gabe and Lindsay and the Grease Performers perform at Standing Room Only. It is a show with the IBT company and IUN dancers. The Grease performers are the youngest ones! :)

June

6/9 Was RECITAL!!! (The best day of the year!!!)

6/20 Darren turned 37! We celebrated with Gramma and Grampa and Becca and Tom. Becca made another one of her amazing creations.

6/24 Gabe had his 3rd surgery for Metopic Craniosynostosis.

July

7/1 Gabe was molded for his helmet.

July 2nd Gabe was discharged from the hospital. We stayed at the RMH.

July 3rd Gabe and I tried to head home. He started exhibiting signed of Chemical Meningitis.

July 4th Gabe and I made it home.

7/7 We made the trip to Ballert, Dr. McKinnon, Comer for X-rays

7/10 Another trip to Ballert & Dr. McKinnon

7/14 Yet ANOTHER trip to Ballert & Dr. McKinnon. We began the technique called Craniofacial Osteogenesis Distraction.

7/15-7/19 Went to Madison, WI with Kristen S. for the ASAP Conference. (Chiari Syringomyelia Conference)

7/19 Family Advisory Board Sponsored Dinner at the Ronald McDonald House.

7/20 Another trip to Ballert & Dr. McKinnon

7/25 Blisters at wire sites

7/28 Wire sites infected, wires pulled. Funny Store, read HERE.

August

8/5 Hannah turns 6 and Mommy is 35!!!

8/6 Lindsay has xrays, Shunt tap

8/8 Hometown Days Parade as soon as the parade was over we left for DISCOVER CAMP.

8/8-8/16 Discover Camp, Columbia KY.

8/11 HANNAH LOST HER 1st TOOTH!!!!

8/17 First time I noted Gabe's Expanding/Depressing head....

8/24 Bad visit with Dr. McKinnon. You can read about it HERE.

8/29 Hell Hath Froze Over... Mom and Pops finally got MARRIED!!!!

September

Gabe was invited to participate in the Jorge Posada Gala to raise money for craniosynostosis. Unfortunately due to a turn in Gabe's health he missed the event. It was a very sad time for Gabe.

9/4 We had dinner at the RMH for DANIEL's 21st birthday.

9/8 Lindsay had appointment with Orthosurgeon. She is fine, Gabe's pain is out of control. I take Gabe to Comer ER.

9/10 Gabe has Clinic with Dr. Frim.

9/11 We set surgery date for 10/5.

9/12 Nutcracker Auditions & my and Darren's 11th anniversary.

9/13 Parent's Meeting for Nutcracker and Darren and I celebrate our anniversary.

9/23 Fayeth has sleep study done at the U of C.

9/30 We found out Fayeth's sleep study is normal. :)

October

10/1 Gabe has MRI

10/5 Gabe has his 4th surgery for Craniosynostosis. PICU 10/5-late on 10/9, Comer 5 10/9-10/21. Gabe's skull was noted to have collapsed thus causing the 4th surgery.

10/29 Gabe post op clinic visit, Lindsay's shunt is leaking.

10/30 We carve pumpkins, Gramma does it in her own special way.

10/31 Halloween

November

11/4 Post op visit with Dr. Reid

11/11 Fayeth has appointment with Neurologist. Neurologist thinks that Fayeth has PTC.

11/12 Lindsay sedated for shunt tap then clinic, Gabe has a shunt tap in clinic.

11/17 FAB dinner downtown Chicago. :)

11/22 Land of the Sweets Brunch

11/26 Thanksgiving at my moms. We had some special guests.

December

12/1-12/5 Nutcracker

12/7 Mom, the kids and I hosted Dinner at the RMH. Lindsay donated another 185,370 soda tops. This brings her total to 273,242

12/17 The kids made a Gingerbread house for Gramma & Grampa.

12/19 Christmas with the Hartmans.

12/24 Christmas Eve at home with the family.

12/25 Christmas Day at home, that evening Mom/Pops & Becca and Tom come over.

12/28 Christmas with the Raysons.

12/31 A nice quiet day and party with the kids. WELCOME 2010!!!

Melissa & Doug Doll House Giveaway...

2009-12-14T19:08:00.001-06:00

This three-level wooden house is easy to assemble and in move-in condition. Five spacious rooms feature two movable staircases and five working exterior doors. Nineteen pieces of hand painted furniture with working doors and drawers provide the finishing touch. Perfect for home or school.

Dimensions: 28″ x 15.5″ x 28″ Assembled Recommended Ages: 3+ years
Contains small parts. Adult assembly required.

Buy It:
Purchase Dollhouse for $149.99 at MelissaAndDoug.com
Purchase Family Wooden Doll Set for $19.99 at MelissaAndDoug.com

WIN IT!
We are offering one lucky reader the Multi-Level Wooden Dollhouse with the Family Wooden Doll Set!

ENTER Thru midnight EST DECEMBER 16, 2009.

How to Enter: Just head on over to MelissaAndDoug.com and come back HERE and tell us (with a comment) one other product your little one would love to have.

That’s all you have to do to enter. We’ll make it even easier…copy and paste the beginning of your comment from right here: ONE OTHER TOY I’D LOVE TO HAVE IS

MUST BE A RESIDENT OF THE
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Extra Entries:

Tweet this contest. You can do this 1 time a day for 1 daily entry through 12.16.09.
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The winner is picked using random.org and will be posted here within 48 hours of the drawing deadline. The random number generated will be matched to that same comment number to determine the winner. Winner’s first name and last initial will be posted here on our blog. Additionally, the winner will be contacted directly through email.

*Each entry needs it’s own comment. Unfortunately, we can not accept combined entries as more than one entry. For example, sending in one entry that says you blogged and tweeted about this post and that you’d love to have the cupcakes set will only count as 1 entry.

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So many things to be grateful for....

2009-11-26T00:09:00.003-06:00

We love you Lindsay!!!!!

Craniosynostosis, Take 4....

2009-11-02T13:22:00.008-06:00

Monday October 5, 2009 Gabe had his 4th surgery for craniosynostosis. Gabe's surgery in June failed and his skull was depressed from where it was post op. Gabe's CT showed that he had no room left in his skull for his brain. After a long conversation with Dr. Frim we opted to do surgery again. To read the story go HERE and read back in October 2009.

October 5, 2009

Gabe-Birds Eye View pre-op

Not such a happy guy

Forcing a smile for Mommy

4:26pm (2 hours post op)
Look how big his head is

Our Green Flag and the Black and White Checkers Flag. Racing to the finish line.

5:18pm (2.5 hours post op)
His new head height-from moving the bone that has collapsed

8:21pm Swelling is starting

Gabe and his gorgeous blanket

10:50pm Gabe's drain was draining off a lot of blood. Right side of his forehead was starting to swell.

10/6/09 12:56pm "Hey Look, I am Charlie Brown!!!"

10/6/09 2:02pm The left side starts the massive swelling process

10/6/09 7:54pm Swelling is significant to the left side of his head/face.

10/6/09 at 11pm

Misc Pics

2009-10-31T11:21:00.004-05:00

What can I say.... Gabe and his "story". His beads of courage. He loves his beads. They tell what he has been through.

7 days and counting.....

2009-09-28T09:52:00.002-05:00

Next week at this time, Gabe will be having his 4th cranial expansion surgery. I cannot grasp why our single suture metopic craniosynostosis child is going through this, again. I thought May 2003 our journey with cranio ended. Then I thought that same thing in February 2005. In June 2009 I was very hopeful that this was the end of his cranial space issue, and 14.5 weeks later, here we are again.

This time around there will be no wires, no helmet. They are going to remove sections of skull and use titanium plates/mesh to make areas of his cranial vault. This should *hopefully* prevent his head from caving in, and allow the brain ample room to grow. We are worse now than we were before his surgery 14.5 weeks ago. THAT is hard to say.

Last night I was in that desperate feeling mode. Today, I am better. I prayed and turned it over to God. I am not in control of what is going to happen or the journey that is planned for my child. I have to accept that. I know that God will keep Gabe safe and that his hand in on Gabe in this journey. I am not sure how people who do not have a relationship with God do this. How they traverse this journey. I need him there to give me strength.

Discover Camp 2009

2009-08-19T08:18:00.012-05:00

I cannot write and do justice to the how amazing Discover Camp was this year. Janet and the amazing people of Columbia, Kentucky and the Columbia Baptist Church were wonderful to us. We had a week of living in a bubble.

We love you all!

From the past....

2009-08-02T10:31:00.004-05:00

I have been thinking about how much I have changed in the last 7.5 years. I was scrolling through the blog and I found this post. I posted that in January 2007. To think about that, the words Chiari Malformation, Pseudotumor Cerebri/Intracranial Hypertension, Dysautonomia and Shunts had not even entered our vocabulary except for a rare passing conversation.

I want to be the coffee bean......

If its not one shunt, its the other... ;)

2009-08-02T01:41:00.003-05:00

For the past few weeks we have been having some issues with Lindsay's shunt. It all started just before Gabe's surgery and has continued. Lindsay is exhibiting symptoms of high pressure. We have done everything that we know to do and nothing has helped. Dr. Frim has been notified and he is going to try to get her into clinic on Thursday. I hope so since we are leaving for Camp on Saturday and it would be nice to rule out that there is anything wrong before we leave. :)

I get one sleeping through the night and then the other one stops. Tis so much fun. :)

A slight glimmer of hope....

2009-07-30T22:34:00.002-05:00

Today Gabe woke up with very minimal pain. Yeah us! I did give him Loratab around 11pm, but nothing after that. He was very good the majority of the day with the exception of when he was lying down to watch a movie. Gabe's shunt does not drain while he is down. So his pressure got high enough that he was uncomfortable. His pain was still higher than when he woke up when he went to bed. So this is a step in the right direction. Lets hope he keeps it up!

What kind of Mommy am I?

2009-07-28T20:54:00.004-05:00

Today, due to an infection in the wires that were being used to distract Gabe's head, he had to have his wires removed. The procedure is done, in the office with no sedating meds on board. He already has pain because of the infection and how we are going to use hemostats and wire cutters and cut back the wire on both sides of his head. Then you attach a hemo to each remaining wire protruding from his head and you PULL one then the other. Now, Gabe is probably one of the toughest kids I know, but dang it...He cried. It was rather savage to watch and probably more savage to live through. But he did. The areas did not bleed and the areas were left open to allow any drainage from the puncture wounds. We put some ointment on them and we were on our way to the Orthotist to have some final phase work done on this helmet.

By the time we walked out of the building, across the street and to our car in the parking garage he was bleeding from one of the puncture wounds. I rummage through my bag to find something to give him to hold pressure on this wound and I have NO tissues or napkins. All I find in my purse is a tampon and an always ultrathin overnight. I unwrap the pad and make it where it will not stick to his hand and give it to him to hold on his wound.

Me: Here Gabe. Hold this up to your head

Darren: Did you give him a MAXI PAD to put on his head?

Me: Umm, yes. I did not want him to bleed all over his shirt and ruin it...

Darren: Well, I hope this is the one and only time he can say he used a maxi pad...

When we arrived at the Orthotist office we all get out of the car. We are almost to the front door and I notice that Gabe still has the pad held to his head.

Me: Buddy, we need to put that back into the car.

Gabe: Why? My head is bleeding...

Me: If you really thought that people stared at you when you had your helmet and wires...they are going to stare and point more now when you have a pad held to the side of your head.

Gabe: Oh, Can I get a tissue here?

Me: Umm, Yes you can Buddy!

What kind of Mommy does not have a napkin or tissue shoved somewhere in her car? Poor Kid...

Gabe 1 week 6 days post op

Gabe 5 weeks 6 days post op

Gabe 6/24/09-Birds Eye View

Gabe 5w6d post op-You can see that he is more full in the temple region. Yeah! Not as much as we would have liked, but this will have to do...for now...

The Conference....

2009-07-25T17:01:00.002-05:00

There are so many things that I would love to share with you about the conference, but I won't completely bore you all. Dr. Frim was speaking about neuropsych issues. He spoke about a study of children/adults that were 1 year post op and were asked to take a neuropsych study. Gabe was in those numbers. It was very hard to hear that your child is a statistic. I mean, we KNOW our children are statistics, but it is very easy to not see the revelance of their "stat" until you hear it spoken about at a conference. Frim also spoke about Failed Chiari Decompressions. (That would also be Gabe) and about how 4-5% of his chiari decompressions develop PTC. That is my son... My son is one of the 4-5%. While I KNEW that, or some odd reason, hearing it spoken about at the conference was just hard. However, the hardest point that Dr. Frim brought up was that the long term prognosis was not known for these kids. However it was noted that Spinal Cord and Brain Fatigue has been seen to happen in these kids as they get older and that spinal cord function deteriorates sooner (than in none CM/SM) kids.

You hear that and you look around the room and you see 20-somethings in wheelchairs and other adults in wheelchairs and you HOPE that is not your kid. Then you feel HORRIBLE for thinking that way. Friday afternoon when we walked out of that conference session Kristen, Cindy, Jenni, Kirk and myself just sort of looked at each other. I believe the phrase may had been, "Wow!", "My brain hurts", and heavy sighs. Jenni and Kirk mentally and emotionally could take no more, and they had to leave. I understand. I wanted to also.

I can tell you without a doubt that there was a lot of fear in us at that moment, but I think that there was more heartbreak. I believe at that moment while we always knew that our kids were not typical it really sunk completely in for the first time....This is not a ride that we get off. We will always been on this ride.

I cried Friday. In the hotel lobby waiting for Cindy to get back to the hotel so we could go to dinner. Kristen had never seen me cry. "You are always a rock". I was not that night. Jenni and Kirk had a rough time on the way home. Kristen was quite. Cindy, also.

For the rest of the conference there was a dark undertone. But Kristen and I plugged away and attended the rest of the seminars. I still have a sense of sadness when I look at my little ones.

Kristen, Cindy, Jenni and Kirk-THANK YOU for the great time!!! Cindy-you and your kids remain in our thoughts as Carson's decompression date moves closer. Jenni and Kirk-My heart breaks that you did not have better results from the MRI. We will keep you guy and Jacob in our thoughts and prayers. Kristen-you and Nic are in my heart. I will try to come and see you while you are in Chicago for Nic's revision.

Random Acts of Kindness...

2009-07-22T15:18:00.002-05:00

In less than 48 hours I have been the recipient of 2 random acts of kindness. Monday, after my bad dealings with a crabby radiology tech I went to exit the parking garage and realized that I was out of parking stickers. ACK! So I dug a $20 out of my purse and gave it to the parking attendant. Then entire time thinking, "Great, I get to pay $10 for being here 15 minutes!" I never said anything to the attendant and when I went to reach for my change, he handed me back my $20. I said, "But I..." and he stopped me and said, "Don't worry. You just looked like you needed something nice to happen today. You have a great day!" Which his kindness meant so much to me.

Today I headed to the grocery store. Fayeth was in the cart, Lindsay and Hannah were holding hands with Gabe and were on either side of him to prevent him from bumping into anyone. His helmet bars stick out and sometimes he bumps into things. And those bars hurt not only the person he bumps into, but also himself. We had a few people look and stare, but nothing horrible. The shift manager came up to Gabe and said, "Hey man! That is a really awesome helmet you have there! Great Colors!" and gave Gabe a Hi-5. Then he told the girls, "I think it is really great how you are looking after your brother. You are a great family that takes care of each other!" I thanked him and kept moving. (On a side note-Gabe is not feeling well today. Headpain is high, he is getting a cold, and a storm front is moving in so I knew I had limited time. I also had forgotten pain meds) We continue about our business when a family of 5 (2 parents, 3 kids probably 16-13-10 in age) start staring at Gabe. I ignored it. Then I notice that they are pointing, I again ignore it. I think look up and they are pointing. I decided that the best course of action was to change aisles. Thinking that Gabe was not paying attention to them, I figured that it was best not to make any comment to the people.

In the next aisle, there they are again. Talking, pointing staring and trying to decide between them what was the best answer for why Gabe would be like he is. I was getting ready to change aisles again and while we were walking into the new aisle Gabe says, "They were talking, pointing and staring at me! That makes me feel bad." I simply said to him, "I know it does buddy, but sometimes people are just rude and ignorant and cannot help themselves. They are still in the other aisle and we are almost done. We will hurry!" That said and these people followed us into the next aisle. They were very loud and basically saying, "I cannot believe she would bring her child out to the store looking like that. He could scare other children!" Gabe heard this and when I turned around he was in tears. I got down to his level and looked him in the eyes and told him, "Gabe, I love you. You are the strongest and most brave little boy that I have every known. God chose this path for us for a reason. He has also scattered it with stupid people. Normally Buddy we should educate people, but this time it is not possible. I cannot help the fact that these people are stupid and moron and compassionless. You cannot teach compassion. However you can teach tact. I am sorry that you are going through this right now but the only excuse I can give you are that they are asses. They are too stupid to take a few minutes to be brave enough to ask us why you are wearing you helmet, and we would take our time to answer their questions. But they allowed ignorance to lead their behavior. It is RUDE to point and stare." I had a few things left on my list but by then decided that it was time to go.

In check out the kids were helping me load the conveyor and I took a few moments to praise their exceptional behavior at the store. The lady in front of me praised me for taking the time to praise my children. She said that parents never take the time to tell their kids how good they are being, but how bad they are being. I thanked her. As I was finishing up loading my cart, the shift manager that had given Gabe a hi-5 earlier, came up to me and handed me a bag of "snacks" and told me that he wanted to thank the kids for being so wonderful to their brother and helping him out and taking such good care of him. He told us that they were so well behaved and that it just touched him deeply to see their love of each other. I thanked him again, and told him that it was nice to hear the good things.

So, I am asking everyone who reads here to pay it forward. Do something or say something kind to someone today. The kind words DO make a difference!

Chiari/Syringomyelia Conference 2009

2009-07-15T08:30:00.003-05:00

Well people, for the first time since May 2001 I will be travelling WITHOUT CHILDREN!!!! I am going to the ASAP Conference in Madison, Wisconsin. In the last 12 hours my anxiety about leaving the kids, especially Gabe, have come to full force. Gabe is 3 weeks post op today and we are manually distracting his head and I am expecting my (poor) mom to do this. I know she can, but it is still scary to release this control. (Yeah, I have control issues. I can embrace that and own it)

The best part of this trip, minus having to share my bed with FAYETH, is that I get to spend time with some of my favorite Chiari Moms. (Just wait until camp, THAT is a lot of fun, 23 of my favorite Chiari Families!!!!) Kristen has flown in from OK and I will pick her up in Mt. Prospect this afternoon. Our friend Tommi had to cancel due to her daughters surgical wound infection. Cindy will be coming along with her friend Jenni (whom I have yet to meet) Kristen and I are sharing a room. No Kids. No listening to "Mommy, Mommy Mommy!"

I will be back sometime on Sunday. We have a FAB dinner at the RMH on Sunday so I will be stopping there to help with Dinner before we come home. Have a great weekend ladies!!!

Craniofacial Distraction Osteogenesis

2009-07-15T00:09:00.009-05:00

The procedure in which we are going about making Gabe's head bigger is called Craniofacial Distraction Osteogenesis. In generic terms they go in, crack his head like an egg, use sutures to loosely hold the fracture bones in place, attach wires to the fractured bones and pull them out of the skin. Those wires are then attached to a helmet. (in our case) You then manually make the head larger over the course of time. By manually, I mean, *I* (mommy) turn the key device twice a day. We just started doing that today. So, I am not completely sure what the pain scale will be in this. We are also allowing the brain to distract a section of bone over the top of Gabe's parasagittal sinus itself.

Wires coming out of the skin on the skull, attached to a spring that will provide a constant tension of "250" at all times (this is an orthodontic spring) that is now attached to a spring ring clasp. (It was attached to a fishing swivel)

We are already seeing some improvements:

Front of head:

Day of Surgery 6/24/09

2 weeks 2 days post op

2 weeks 6 days.

The forhead is much more round as are the temples!

More to come later!

Craniosynostosis, Take 3!

2009-07-14T23:25:00.010-05:00

Some pics from Gabe's 3rd Cranial Expansion:

Our view from 3rd floor surgery holding....

See the story here.

If you want to read the story behind the pictures go here.

Gabe's helmet lost the fight with Hannah's head...

Packing and Pandora's Box....

2009-06-21T23:51:00.005-05:00

This is always one of the worst parts of surgery. Not the fact that I have to do 8 bazillion loads of laundry to get everything ready to go, but the packing to disperse my children to other family member while I leave to go to the hospital with another child. Tonight I am finishing up laundry and my heart is breaking. I am packing bags and realizing that it is going to be a week before I see Fayeth again and 6 days before I see Lindsay and Hannah. As much as they drive me insane at times, I love them so much the fact that I won't be able to see them for so long is breaking my heart. Now top that off with stress, pms and worry...and DAMMIT I AM A JOY!!! :)

Also the concern that we are opening Pandora's box is scary. After Gabe's decompression we opened that nasty little proverbial box.... Just in case you were undecided...Pandora is a BITCH! A BIG OLD NASTY BITCH!! We had decompression, chemical meningitis, papilledema, dx PTC, sight flair up of chemical meningitis, drain trial, reaction to flu vaccine, Shunt placement, OR for an LP on Christmas Eve and back to the OR for an LP on his birthday, Shunt revision. That was from June 27, 2007-February 20, 2007. ACK!

Darren and I both got a gift for Father's Day.... We showed my mom and my sister and the looks on their face said it all.

Please just pray that this was a fluke thing and we are not traveling down this road....again....

Poor Darren....

2009-06-21T15:49:00.002-05:00

Hannah: "Daddy how old are you?"

Daddy: "I am 37"

Hannah: "Oh NO! You are not a daddy anymore!!! You are a GRAMPA!!!!"

Daddy: "I love you too hun!"

Fayeth and My Mom...

2009-06-20T10:20:00.002-05:00

Fayeth is so rotten to my mom. My mom use to think that Hannah was the thorn in her side....Then came Fayeth. Hannah argues with my mom, "Because it is fun!". Fayeth is just a shit and speaks her mind. A few funnies over the past week....

Gramma goes to kiss Fayeth "Bye".

Fayeth: "You have a butt on your nose"

Gramma: WHAT?

Fayeth: Gramma you have a butt on your nose.

Gramma: * Leans over and brushes her nose over Fayeth's face * Now I wiped my BUTT on your face.

Fayeth: But your butt is still on YOUR nose!

Gramma: I cannot make your family happy. When your mommy was pregnant with the twins your daddy said he did not care who they looked like as long as they did not have MY nose. My nose that was shaped like a ski slope. Then I get the end of my nose cut off to make him happy and now YOU tell me I have a butt on my nose!!!

*side note* My mom DID NOT have the end of her nose removed for cosmetic purposes, she had basal cell skin cancer.

On June 10th, Mom, Fayeth, Hannah and myself went to the U of C to donate blood. I could not donate blood because my blood pressure was too high however my mom was able to. The blood bank gave my mom a red silicone bracelet that says, "Give Blood". Since Gabe gave my mom one of his 3 purple silicone Chiari bracelets she said she would give him her red bracelet. (Gabe LOVES silicone bracelets) So the day after the twins came home from camping, my mom told Gabe at lunch that she had something for him. She gave him her red bracelet and he was thrilled.

Gabe: Gramma, thank you SO MUCH for donating blood for me and giving me this awesome bracelet.

Gramma: You are welcome Gabe. If they use my blood and you fall and skin your knee I am going to give your grief for wasting my blood ;)

Gabe: Oh Gramma you are so silly!

Fayeth: Gabe you are going to have OLD LADY BLOOD in you!!!

Gramma: Fayeth, you are such a brat

Fayeth: I know Gramma!!! I love you too!

And the total was.....

2009-06-19T09:34:00.003-05:00

Excuse my messy table, however to put thing into perspective.... the pile on the table is 2212 soda tops. The grand total from the container (that was donated by a friend of ours who is a Southwest Airlines Flight attendant) was 9744 soda tops.

Tiffini-since you were the closest in the time frame send me your mailing address =). Pretty soon I will have another game. :)

2009-06-16T01:22:00.002-05:00

In 8.5 hours I will be speaking to a group of new orientees to the medical center. This is the first time since being on the FAB that I have had to speak to the Nurses. Last year I was taped and it was played for Schwartz Rounds.

They ask that you bring pictures to make your stories more personal and to touch these new employees. So the last few days I have been looking thru pics, which is making this so much harder. I should not have done this. I am too emotional. I am very concerned about tomorrow. I am very concerned about surgery in a week. This journey...again....

Gabe 11 months old-Christmas Day. This was the pic that we saw his ridge. This photo was the start of his metopic craniosynostosis diagnosis.

Post op 19 hrs.

27 hours post op

6 days post op

3 weeks post op...

2009-06-14T00:55:00.002-05:00

So.Very.Irritated....

A Game...

2009-05-21T19:03:00.003-05:00

I was given this container of soda tops on Monday. I do not know who donated them, they dropped them off at my mom's work and she was not there. (She was at my house being a slave driving, mulch throwing, weed pulling crazy woman-Really Mommy...I love you and appreciate your help!!!) So, to make this a little fun...Let's Guess how many soda tops are in there. The container is 7.25 inches X 7.25 inches X 11 inches high. I did not include the rim. Whomever guesses correctly or closest to the correct amount I will send them a silicone Chiari Bracelet. These are Gabe's absolute favorite and wears 1 on each wrist at all times. Of course, we know this family and love them much. The deadline to guess is Monday May 25th at 11:59pm. :)

The difference

2009-05-21T18:42:00.002-05:00

in a few hours, less than 2 to be exact....

Gabe 4:55pm

Gabe 6:30pm

Surgery in 4 weeks 6 days...

Hannah the Hairdresser...

2009-05-12T10:03:00.003-05:00

First off, please let me tell you that these tears are NOT from cutting her hair. They are because she got in trouble for playing with scissors and lying to mommy. She thinks that her hair looks beautiful. I could have cared less if it were not 4 weeks to recital and recital pics have not been taken yet.

My mom stopped by yesterday to see the disaster that Hannah caused to her hair and Lindsay said to my mom...

Lindsay: Remember how Daddy yelled at me when I pulled my loose tooth out? That was loud! Can you imagine how much more loud he is going to be when he sees Hannah's hair?

Oh yes child, you hit the nail right on the head....

Science....I hope?

2009-05-10T16:44:00.000-05:00

As shared with a friend....

Me: My daughter (Lindsay) wants to keep a baby earth worm in a bucket and see how long it takes them to die....
Her: oh my
Me: Yep. Why do you want to know that Lindsay? "So that I know how long I can keep a baby earth worm until it dies. So if it take 4 days for the worm to die, the next worm I will let go back to the wild in 3 days. Doesn't that make sense? Why kill a bunch of worms on accident when you can sacrifice 1 and the others will live?!"
Her: maybe she wants to be a scientist when she grows up
Me: She wants to be a nurse that works with Gabe who is going to be a dancing neurosurgeon...
Her: LOL well that should be interesting

And out of the blue...

2009-04-17T11:12:00.003-05:00

After Lindsay's anaphyllactic shock episode in the OR I had moments of sheer panic that centered around Lindsay. I spoke with a close friend of mine and asked her if it could be a little PTSD-ish. A lot of my issues would be when I would look at pics and it would only be of Gabe, Hannah and Fayeth or when talking about an upcoming event and thinking that it could have been without Lindsay. It got better as time went on and after her successful attempt at surgery I did not give it a second thought.

Easter Sunday I was driving to my mom and stepdad's house. I drive past my sisters house to do this, I was almost to where I had to turn to go down my mom's road when I saw an accident at the intersection. The ambulance and police officers were there. I parked a ways back because I could see the talk end of a cadiallac sticking out of the ditch. (My sister and her husband had a cadillac and were going to my moms also) I instantaneously could feel my heart start beating faster, my chest got tighers and all I could think about was please don't let this be my sister. I quickly walked down to the scene and just before the police officers got to me I looked into the ditch and was grateful to see it was not my sister's car. (there were 2 cars-1 in the ditch the other was smashed horrible and on the embankment of the ditch-both in horrible shape) The police officers came up to me and all I could get out was, "I am on the way to my mom's. My sister drives a cadiallac. I am so grateful that is not her car." And then the tears came. I could not hold them back. I was shaking and crying. The police officers had no clue what to take of my response. I just forced them a quick smile and a Happy Easter and walked back to my car. I was able to compose myself enough to get into the car. By then the kids figured out that the car was a cadiallac and they were starting to get a little panicked also.

I told them it was not Aunt Becca's car and I turned the car around to take the long way to my mom's house. I made it 0.2miles before I again lost it. The thoughts of I could have had to tell my mom that my sister was in an accident or I could have had to tell my sister that her husband was in an accident were overwhelming. All of a sudden my mind snapped to that moment where we spoke with Frim. Then the thoughts came back into my head. This could have been our first major Holiday without Lindsay. We could have been a family of 5, no longer 6.

I pulled over at my Aunt's house to compose myself as I could not drive in that state. The children had again started to get upset that it actually was Aunt Becca and I was not telling them the truth. I called Darren-who had not left our house yet-and told him what happened. I calmed down and drove to my mom's house. When I got there the kids jumped out of the car and went running into the house and telling my mom that there was an accident and I was crying. So I had to quickly tell her what happened. Leaving out my own issues as it was a Holiday and there is no reason to make her worry.

Fayeth-3y 11m, Hannah-5y 8m, Lindsay and Gabe 7 y 2.5m

For me the day was a little down cast. I made sure to get pictures of all the kids. I did miss getting a group shot of the kids when everyone arrived, but I will work on that next time.

Last night was Lindsay's 1st performance since her surgery. She did marvelous. However while standing at the back of the auditorium watching the kids-out of the blue, the thought came into my head-Lindsay's might not have ever performed again. This could have been just Gabe and Hannah performing. Last night it was just a brief thought-a quick stab to the heart-and it was gone. Like a quick but forceful reminder, all it takes is a brief moment and your entire world can be turned upside down.

Coppelia 2009
Lindsay-Floppy Clown (her choice), Gabe- Soldier, Hannah-Green Baby Doll

On a happier note. This is Lindsay and Gabe's 6th company production and Hannah's 4th.
My sweet, sweet kids-
I love you so very much. You never cease to make me proud. You will always be stars in my eyes. I love you so much!
Mommy

Reading per Hannah...

2009-03-16T13:09:00.002-05:00

Thank goodness that I love this child to bits and pieces!!! Hannah has been able to read since she was 3, in the past 2 years GETTING her to read to us has been a challenge. She will read to Lindsay or she will "struggle" through a pre-reader and start crying about how hard it is or she will just sit there and stare blankly at the pages and tell us she DOES NOT KNOW HOW TO READ! She is a challenge. Everything else I can get her to back down from. This I cannot. So we walked away from reading for a while. Last week she read me a book. I gave her much positive praise the hole shebang. I repeatedly told her how proud I was of her. Then I asked her...

Me: Hannah, why won't you read to me when I ask you to?
Hannah: You do not give me everything that I want.
Me: Yes Hannah I am aware of that because it will teach you in the long run to earn things and that you can't have everything you want in that moment.
Hannah: With all do respect Mommy, then why should I give you everything that you want?

Wow! I will say I had to walk away for a moment because she has a valid arguement. However we have since discussed the fact that she needs to respect me and do as I say....

As of today she is no longer able to read. *Rolls Eyes*

***UPDATE*** AS I was typing this she was downstairs. She read 3 pathetically easy books to Darren. AH! That child of mine. She MIGHT be the death of me.

Surgery Take 3...

2009-03-09T00:36:00.007-05:00

(Started Sunday March 8)

It is hard to believe that it was just a week ago that I was lying in bed trying to go to sleep for Lindsay's surgery. I remember being panicked that her new onset cold symptoms would progress and she would developed a fever and wheezing and that the surgery would be canceled. As scared as I was of surgery and the potential for another anaphylactic reaction I was more scared that they would cancel it. The weeks following her first anaphylactic reaction brought worsening of her symptoms. Her pain would get so bad that all she would do some days would be sleep while others she would not sleep for days. She was confused and having a hard time remembering how to turn off the faucet and actually argued with me over how old she actually was. She could not remember turning 7. She would forget words, like strawberry or blueberries and well, she was just a mess! She looked bad and in all honesty to say that she looked like death warmed over would not have been a lie.

That night when we got to the RMH Lindsay started with cold symptoms. Nothing major, just a runny nose. Then the sneezing started and the nose would not stop running. Panic began to set in and fear of the next day arose. Darren went to bed early and Lindsay, my mom and I watched The Nutcracker DVD. It was beautiful! We went to bed around midnight. Sometime either just before 2 or just after 2 I fell asleep. However worried that I would oversleep the alarm I was up and down about every 45 minutes. 4am rolled around and I got up and going. Everyone needed to shower and Lindsay needed her hair dried and braided.

Unfortunately there is no shuttle to the hospital from 5:00am-7:30am so we loaded up the car with the suitcases and we headed to the hospital. We parked at 5:48am and we were to the surgery holding room by 5:58am. (We had to be there at 6am) We filled out the paperwork and joked with Ronie (the NORMAL Desk nurse) and got settled until they called us.

6:30am they called us back to the pre-op room. Lindsay got undressed and redressed in her amazing hospital garb.

Everyone came in and started their paper work. Our pre-op nurse put Lindsay's pink band on her which means that Neurosurgery needs to fill out their H&P. Lindsay was so tickled she had every intention of telling Dr. Frim when he walked in that she had a homework assignment for him. Everyone knew who we were before we came and and knew what Lindsay had happen to her the previous attempt at surgery. Everyone was very compassionate and understanding and were just wonderful. The NS resident Dr. T came in and started going over the consent form with me. Lindsay was sitting on the chair with her Build A Bear "Leah" and was talking with my mom and Darren. Dr. T must have caught her attention and while he was telling me in great detail about the potential risks in the surgery he says to me that "While advancing the shunt tubing into the foramen magnum the shunt catheter is suppose to run parallel to the brain stem. However the brain stem or the cerebellum can be hit and cause problems that can affect the entire body." Lindsay said, "Ummm Hello!!! I SOOOO did not need to hear that!" Dr. T and I both we sort of floored that she was paying attention and then *I* started to laugh at the look of horror on his face as he realized that this little person put him in his place. He then told her that she did not have to listen any more and Lindsay went back to listening to Gramma and Daddy. As Dr. T went over the blood transfusion consent he was telling me again the potential causes for her to need blood and he said, "Bleeding is not uncommon during surgery and if it became an issue we would need consent to give her a transfusion to keep her alive." Lindsay again said, "I soooo did not need to hear THAT either!". We just laughed! What could we do. Dr. T tried to make us feel better by saying that it was a 1 in 1000 or 1 in 10000 chance that she would need a blood transfusion. I just laughed at Dr. T and said, "Stats never tend to go in our favor! You know her allergy issue!" He laughed and said, "So very true!"

Our amazing Tracy from Child Life came and got Lindsay and her mask set up, Dr. Caitlin (anesthesiologist) came in and again went over the game plan with us and specifically told us what meds were being given at what times and that all the meds that were needed to treat her anaphylaxis were already drawn up and ready to be given if necessary. Everything was in place to do this surgery.

7:35 am and it was time to start the walk. The dreaded walk to the red line. Lindsay was quite literally running to the OR because she was ready to feel better. She stopped the at the red line and gave us all hugs and kisses and headed on her merry way. She looked back and waved as she was dragging the NP and the residents and Tracy down the hallway. I then started crying as the door closed. I had an instant of panic. Where I wanted to run through the red doors and snatch her back up, but I knew that this was in God's Hands and all would be good.

We went back to the waiting room where my buddy Ronie gave me a lecture that I needed to go and eat before she got out of surgery and how I needed to take care of myself. She told me that I was not to leave the surgery waiting room without a pager. They needed to know that they could get a hold of me ASAP. I had just finally gotten all calmed down when Tracy brought out "Leah". I again started to cry. (As I am doing now) She gave me the pep talk and told me that she would check in on her whenever I needed her to. To have Ronie call her and she would immediately get an update on Lindsay. I told mom and Darren that if we could make it to 9am without a call she did not have a reaction and they were good to go.

We spoke with another family whose baby was having a hernia repaired. The baby was a twin. We talked about life with twins. I then just felt the need to be quiet and pray. Darren was sleeping.
Do you believe that is how the miserable bastard deals with stress? HE SLEEPS???

8:55am the phone rings and is for us. I go back to the phone and it was Dr. Frim. All was good. Lindsay was sedated in a very deep state of sleep with LOTS of anesthesia meds on board and she was face down positioned for surgery. I specifically remember asking. "So, NO reactions then?" to which Dr. Frim replies, "Not yet, at least". To which I replied, "My you are quite witty today!" He tells me to go and have breakfast that it would be a long surgery and that I needed to take care of me. He told me that at any point that I wanted an update that all I had to do was have Ronie call back to the OR. He said she knew we were given the OK and she would assist us anyway possible.

9:30am we decided to head to DCAM and get coffee/soda. Ronie gave us a pager and he told her exactly where we would be. We sat in DCAM cafeteria for over an hour. Around 10:40 we headed back to Comer. Mom and Darren needed some fresh air so we went to the ER enterance. It was cold and *I* do not need "Fresh Air" so I waiting in the warm ER waiting room. Our friends, Amanda and Tommi, arrived for Amanda's MRI appointment. We chatted and walked to the MRI waiting room. We met up with another mom whose son is a Frim patient also and we met when we were in playroom in December. (We were all here at the same time) By 11:05am we were back in the OR waiting room.

11:10am Phone Rings-It is for us. I get the phone and it is Dr. Frim. He tells us that part one of her surgery is completed and they have flipped her to start parts 2 and 3. Still no reaction and she is wonderfully stable. He told me that the needle used to pierce the dura and advance the shunt tubing was 10-12cm long and when he pierced her dura CSF filled the needle and shot out the other end. He said that he drained a large amount of fluid. He said he would be in the OR until around 1pm.

11:30am We decide that we should eat. We headed back to DCAM and Ronie gave us the pager back. We had lunch and tinkered around. Finally at 12:30 I said we had to get back to the surgery waiting room. When we got back there within minutes we had another call from Dr. Frim. They were done and were closing and it would be another 30 minutes or so.

12:40pm Tommi comes to visit while Amanda is in MRI. Amanda has made a bear for Lindsay. (A very cute bear, btw)

1:05pm Frim came out to talk to us. Lindsay's surgery was boring :). He decided to check her pressure before he connected the tubing and her pressure started at 29 and jumped to 39. That was not including the large amount of CSF he drained before. I about had a coronary when he said to us, "I have a confession to make". Earlier in February the U of C had to do some major layoffs due to the current economic status. On of Dr. Frim's colleagues was very down during this time and so Dr. Frim was telling her it could be worse. He had a little girl emailing him and begging for surgery. So he shared Lindsay's emails with his colleague. His colleague just happens to be the COO of the Medical Center. She was so taken with Lindsay's emails that she wanted to meet her while she was in the hospital. He asked us if we would mind and we told him that she was more than welcome to come and meet Lindsay. After about a 20 minute chat we decided it was time to head to the PICU to find Lindsay. When I arrived at the PICU I informed the ward clerk that we were Lindsay's parents and wanted to see her ASAP. I got the "We are stablizing her" speech and I told the clerk, "Yeah, I am a nurse and I want to see her ASAP!"

1:30pm We are in PICU waiting. Anne from Child Life comes to get us and we go to see Lindsay. This is what we are greated by:And this:

The computer system was down so the only meds she could have was morphine. Dr. Frim and the "power team" (The NPs) stopped by to check on her. Lindsay was holding his hand telling him how badly she felt and they were pushing the morphine. After they left Lindsay rested for a bit then woke up again looking a little like this:
She informed us that she felt horrible and she know that Dr. Frim did something wrong during surgery. We all could not help but laugh. Fresh little girl she is. ;) Dr. K (Anesthesiologist) came in Lindsay informed her that she felt horrible and that Dr. Frim had to have done something wrong during surgery. Dr K could not HELP but find this funny and wasted no time in tell Dr. Frim.

Gramma makes it all right in the world...

Around 6:30pm:

Around 9pm. Lindsay has started to run a fever and her O2 Sats are low. The reason for the purple lips...Purple Popsicle...

4:49 AM. Lindsay on oxygen to keep her levels up

(to be continued)

Lindsay's Surgery

2009-03-07T10:05:00.001-06:00

I will blog about her surgery later. She was so funny and gave Neurosurgery so much grief that I do have to share.

The kids...

2009-02-18T00:11:00.002-06:00

Just a few funnies from the past few days...

Lindsay talking to Hannah in the livingroom before we left for dance.

Lindsay: "Hannah, you need to work on your 'postulance' when doing your plie."

Hannah: "What?"

Lindsay: "You know, your 'postulance'!"

Hannah: * Insert Scowling Look that only Hannah can give. Ask Carie ;) *

Lindsay: "You know...STAND UP STRAIGHT-'POSTULANCE'!!!"

Me: "Sweetheart, you mean POSTURE."

Lindsay: "Well then what is 'postulance'?"

Me: "I think you mean 'POSTULANT'."

Lindsay: "Well the Sound of Music....."

Valentine's Day-

We are sitting at the dining room table having a candle light dinner with the kids. We were teaching them proper terminology for some words. Urinate, ect...

Darren: * Holding a piece of steak on his fork * "I am going to masturbate my steak."

Me: :-O

Darren: * BLUSH * "I said I am going to MASTICATE my steak"

Me: * Smacking head just waiting *

Gabe: "What is masturbate?"

Me: "Gabe, Daddy meant MASTICATE. Meaning CHEW"

Gabe: "Well then what is masturbate?"

Me: * Looks at Darren thinking how he will pay later knowing that Gabe will not drop this * "Well Gabe...gives medical explanation"

Gabe: "Cool"

Today on the way to dance I have an extra child in my car we will call her Clara. Lindsay was gabby and talking with Clara (who is 6) about how crazy their daddy's are...

Lindsay: "My daddy said he was going to MASTURBATE his steak!"

Me: "Lindsay...ZIP IT! Clara do not forget to remind your mommy that we have a flower meeting on Friday."

Clara: "What is masturbate?"

Me: "Oh sweetheart, she said MASTICATE. That means to CHEW. He was going to CHEW his steak. Aren't you excited to see your recital costume today. Remind me to show you!"

Now I will have to explain to her mom on Friday if this is brought up again. LINDSAY had a sit down to discuss what she SHOULD and SHOULD NOT repeat!!! :)

Surgery Take 2...

2009-02-13T23:32:00.002-06:00

As many of you know Lindsay's first surgery was canceled due to our neurosurgeon, The Bow-Tied One, getting food poisoning. We were rescheduled numerous times before date 2/9/09 was agreed on.

Sunday 2/8/09
I dropped Gabe, Hannah and Fayeth off at Grampa's house (Pop's). Grampa really took time to sit and talk with Lindsay. Lindsay had a little more anxiety that she had in the past and I just chalked it up to her fear that surgery would be canceled again. A few nights earlier she had a nightmare that surgery was canceled. Grampa and Lindsay must have talked for 30 minutes. Grampa had more anxiety than he had in the past and got teary eyed while he was talking to Lindsay. My uneasiness grew a bit. I prayed it off. Grampa gave her a kiss and off Lindsay and I went to say see ya to Gramma at work. I told mom about how Grampa was teary eyed. Then we got teary eyed. I again had a bit of uneasiness about the surgery but I prayed it off. Then we went to the RMH. Darren was meeting us there after he got off of work.

While at the house we had a great dinner that a Greek Orthodox Church had made for the house. And we visited with a few people we know. We went to bed early in anticipation for the big day. I set the alarm for 7am.

Monday 2/9/09
6:54am I am awake. I decided to get up and check my email and whatnot. Lindsay wakes up at 7:45 and we putz around in bed just talking and giggling. I decide that since we have not gotten a phone call that we are a go for surgery. 8:10 I decide that I better show and finish packing. (we have to be in front of the RMH by 9am to catch the shuttle)

8:45am I am doing my hair and make-up adhd style and running around like a lunatic. :)

9:00am I am running out the front door of the RMH as shuttle pulls up.

9:15am we arrive at Comer. Make a pit stop in Child Life for Crayons and paper to make a friend a birthday sign

9:30am Arrive on 3rd floor surgery holding.

9:55-11:45am back in holding room. Finished paperwork. Joked with the Bow Tied one. They get us ready to take her back to the OR.

11:50am We walk to the double red lines, She gives us a hug and kiss and she leaves with The Bow Tied One and the Golden One.

12n I decide that it is okay to go for lunch to the cafeteria in the basement of Mitchell

12:10pm we arrive at the cafeteria, get our food and sit down.

12:23pm I call my mom to check out cell service in the basement.

12:34pm The Bow-Tied One leaves a VM message on my cell phone asking me to call the OR directly.

12:50pm We find medical records to get a copy of the kids medical records. We take a seat and wait.

12:56pm I get an alert that my cell phone has a voice mail message. It is the one left at 12:34pm from the Bow-Tied one. I tried to call the OR. It was busy. We leave medical records quickly to get back to Comer. Along the way I check almost every phone that I see. The line was always busy. I keep telling Darren that there is something wrong. He keeps telling me that she is fine.

12:59pm On Mitchell Bridge. Finally get an answer from that phone to the OR. On Hold.

1:01pm Finally speak to OR nurse. She asks if The Bow Tied one can call me back after he wakes her up. * ALARM SIGNALS IN MY HEAD* I said, But her surgery is 5+ hours. Nurse again says can he call me after he wakes her up. I explain that I am on Mitchell Bridge and that I would be in the OR waiting room in 3 minutes. I then ask if she is OK. Nurse replies, "She is stable.....Now". I hang up phone and quickly walk to elevators to go to 3rd floor.

1:03pm I arrive in OR waiting room. Desk nurse asks the minute we walk into the waiting room if I have spoke to anyone in the OR. Everyone looks at me. With THOSE eyes. The eyes of "Oh my God there is something wrong". I explain that I have and that the Bow Ties One will be calling me in a few minutes.

1:05pm The Phone never rings. All of a sudden The Bow-Tied One sticks his head out of the door and tells us that we need to come and chat in the conference room. My heart sinks. I want to vomit. My heart is beating so fast. I am freaking out on the inside.

1:06pm we are in the conference room. The speech begins and all I can think of is...Is she still alive.... She went into anaphylactic shock on the OR table. Her BP plummeted to 40/0, her heart rate went down, she started wheezing but was thankfully already intubated, she turned red from head to toe (literally) and developed hives. They gave her Benadryl and Steroids. That did not do the trick so they gave her epinepherine (many times) to sustain her vitals. Every time they turned it off she bottomed out again. They started her on a continuous epi drip and aborted surgery. They were in hopes to extubate her before bringing her to the PICU. It was due to a common used drug in the OR. Must wear medical alert bracelet because if she gets this med again she will die. Most hospitals use this med. She had a 1 in 1.1 million reaction. Spoke to Dr. Kr and other Drs while in the OR. Googled/researched reaction. No one has ever seen this reaction. I am thinking, * Breathe Michelle, Breathe.... She is alive. She is okay. Don't vomit on his shoes. I hate the conference room. Only bad news in conference room. OH MY GOD! We will still have to do surgery in the future * We are told to go to PICU waiting room.

1:12pm ish We walk through the waiting room. Everyone's eyes on us. We are THAT family. We are the family that NO ONE wants to be. The one that everyone pities and then breathes a sigh of relief that it is not THEIR child. I know what they are thinking. I am those types of people. Tears are running down my face. My baby almost died. She could have died. She did almost die. OH MY GOD! She almost died.

1:15pm PICU waiting room. Darren nor I speaking at all. Stunned. Silent. Fearful. Thankful. So Very Scared. Darren tells the front desk who we are.

1:19pm Called my mom. Left message that surgery was canceled. Call me.

1:21pm Called my mom's cell phone. She is in grocery store. I tell her as calmly as possible what happened. I start crying. End phone call. Cry more. Calm self.

1:27pm Spoke with MIL. Gave update. Got off phone. Cried more. Calmed Self.

1:35ishpm The Golden One comes in. Talks us through what happened. I start crying. She is in the PICU now. I ask to see her. He says yes that he has already made the nurses mad so who cares if they are more mad at him. I am mom and I am a nurse.

1:40ish We are in her room. Nurses not thrilled about allow this. I want to run away fast. She looks horrible but awesome all at the same time. I cannot touch her. I am scared. She looks so fragile. Her alarms and IVs are beeping. My heart breaks over and over again. My fear speaks up and I keep thinking what could have been and how lucky we are. But the fear creeps in. I sit in chair in the corner.

Sometime after this time Frim came in. We talked. Game Plans. Must talk with PICU & Anesthesiology & Immunology. Blah Blah Blah. I feel like bystander. As if I am not part of what is going on around me. Shock. Fear. Dark Place. Nurses come and nurses go. Drs come and go. We have a 1:1 nurse to monitor Lindsay. Lindsay only awakes with stimuli-deep pain. She is so far out of it. Lots of Fear and what could have beens. Very hazy about what happened...

My baby girl could have died. My baby girl had come very close to dying. Fear. Dark Place. Fear.