Tuesday, September 23, 2008

Mike PICU Update 9.21.08

****This was copied from an e-mail update I sent on Sunday 9.21.08

Hi everyone,
First, thank you so much for your good thoughts and prayers. Second, please keep them coming, we can certainly use them! Third, I am sorry I haven't answered some e-mails and phone calls but I hope you can all understand why that is.
We have been in All Children's Hospital in St. Pete Florida since Wednesday night. I don't know who knows what brought us there but if you don't know I will fill you in if you need to be filled in.
Matt brought Katie up today so that I could take her out to lunch. My mother-in-law flew into Tampa, came in to see Mike and then took Katie back to Cape Coral for us. She is going to stay at our house w/ Katie until we get out of the hospital. Matt stayed with Mike & me for a little while then drove back to the house so he could put Katie to bed. He is going back to work tomorrow so he will be home every night to put Katie to bed. She really needs one of us home. She has no idea Mike had surgery, she just knows that he has a booboo in his brain. I didn't want to let her see him because I was afraid of how affected she would be to see him with a tube coming out of his head. She is upset, worried and nervous but she has been holding it together rather well. Her teacher sent her to the school guidance counselor on Thurs & Friday and I think she is going to do the same thing this week. All in all, she has been doing as well as I think she could be doing.
I just left Mike at the hotel with my mom so that I could get some sleep. I am mentally and physically exhausted and need to be back in a few hours so I am going to re-cap as best I can, shower and head to bed.

I know some of you know this, but Mike had surgery on Friday. Thankfully he came through it great. The neurosurgeons placed a temporary drain in his brain and removed a piece of the growth on the bottom part of his spine and a part of the L5 vertebrae. The frozen specimen of the growth and the fluid that they sent to pathology while he was in the OR were inconclusive so they are running tests on everything. So far the Drs really don't know anything and they won't guess on anything. The general consensus of the Drs is that this could be an infection or a tumor and the only thing they can rule out is a sarcoid issue. The frozen specimen showed that this growth is cellular in nature and not granular so that's how they ruled out a sarcoid. The tissue that they took out to test goes all the way up his spine so we can't even begin to think about a way to treat it until we find out what it is. That night and all day yesterday was horrible... he was in pain and had a reaction to the morphine they gave him, he was hooked up to 3 monitors, a holter monitor, 2 iv's (one in each hand), a pulse ox monitor on his toe and had the drain in his brain. He hates it! Not to mention that he has to have his BP taken every hour!

As of tonight, Mike is still in the PICU. The neurosurgeons have him on a monitor to test the pressure in his brain and determine whether or not he needs a permanent shunt. He has a great team of Drs... neurosurgeons, infectious disease, cardiology, ophthalmology, intensive care and pediatrics. He is going for a CT at 5 AM. The Drs don't feel that we will have any answers for a while on what this tissue is. They said we may have something anywhere from this Wed. to next Friday.

I have never really been any good at the waiting game. I suck at it normally and now I am even worse at it.
Mike has been a real trooper during all of this! His right wrist is wrapped up with an IV and there is an IV port in his left hand too, his drain in the brain is still in there obviously, the PICU monitor is still attached to him with 3 leads and the pulse-ox monitor is still on his foot. His BP still needs to be taken every hour and that is still really pissing him off. But, even with all of that and all of the poking and tests and surgeries he is playing, laughing, talking, watching his DVDs and eating up a storm.
We are hoping that he can get off the brain pressure monitor tomorrow and that we will be able to be transferred to a room on a regular floor until we get a diagnosis.

I am going to head to bed. I will update you when I can. I have my cell phone on at all times so feel free to call me, if I can't answer your call I will get back to you as soon as I can.
Again, thank you all for the prayers and good thoughts. Please keep them coming!


monica said...

Dear Chrissie,

I am praying for Mike. Chris, you are a wonderful Mom. You and Mike will get through this!

You will get the best treatment here! The sooner the better.

Just trust in God! I promise Monica