Shunt Revision....

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.....

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

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.