Tuesday, September 30, 2008

Mike update 9.30.08

We made a big decision yesterday. In speaking to the Dr's here and at Sloan Kettering we feel that Sloan is the place we need to be. With this being an un-identifiable tumor after 10 days Matt and I, and our families think that this has gone on long enough, actually we think it has gone too long, with no answer and that the best place possible for him is Sloan.

The neuro-pathologists here and the neuro-pathologists that they sent slides to at Duke can't figure out what kind of tumor this is in his spine. So, Mike had another surgery last night. This one was done so that the surgeons could get more tissue that all of the pathologists feel that they need to make a diagnosis. He was in surgery for about 3 1/2 hours. They had made sure to wait long enough in there for the pathologists to see that they had enough to work with. When the pathologists looked they didn't feel that there was enough tissue from the Drs just getting pieces of this coating on his spine so they actually ended up having to go into the spinal cord to get the tissue they needed from what looks to be the main tumor. They got what they could and what the pathologists said was enough for everyone to work with and still have enough to save to send to Sloan.

My mom stayed the night here with me last night so she could help me and I could help Mike. I was really glad she did because when we got to the PICU last night around 10 Mike had a very rough first couple of post-op hours. He just kept laying there saying all done, no no, ouch, uh-oh, crying and calling for me. The worst was when he started I sit mommy in chair, i sit mommy in chair... I hated hearing him that way. I was really hesitant to pick him up since he just had spinal surgery but the nurses and the neurosurgeon PA all said it was ok for me to hold him. He laid on me and fell asleep for about 2 hours so that was a HUGE blessing. Around 2:15 the nurse came in to give him more pain meds and to take his vitals so we moved him to the crib for that. He is VERY guarded about moving himself too much. He is moving his arms and legs very well and he is speaking well but the incision that they made in his back is so big and add that to the fact that they had to go into the spinal cord while they were doing the surgery he is uncomfortable enough to be very cautious of how he moves. We are still in the PICU and I am grateful for that. The nurses here are wonderful and have all been so great with us. Don't get me wrong, the nurses on the regular floor are great too but there is just something more comforting about being on the PICU just after surgery and making sure that the nurses are just a little more on top of him here than on a regular floor.

He is doing really well now. We have been giving him Tylenol w/ codeine every 4 hours to control the pain and uncomfort that he is feeling. He is eating and is sitting in the high chair now playing with his DVD player. We are hoping to be transferred back to a regular floor today.

Needless to say, Mike and I both have a reputation around the hospital, he is the adorable stubborn little guy who hates anyone in scrubs and I swear they must think I'm a lunatic. This not knowing what the hell is growing inside his little body makes me sick to my stomach and I am absolutely beserk that between 4 neuro-pathologists here and 2 neuro-pathologists at Duke they can't figure out what kind of tumor this is. And I have no qualms telling that to anyone who will listen here. One of the neuro surgeons actually said that I was a new kind of parent to him because I talked to them like they were human and just told it like it was. I don't know whether that is good or bad but I took it as a compliment! LOL

Anyway, so far the plan for us is for Mike & I to fly into NY via air ambulance on Thursday. We are setting that up today and we will be admitted into Sloan Kettering as soon as the air ambulance and ground ambulance can get there. Katie's last day of school down here will be Friday and my mom will fly her up on Saturday. She will stay w/ my mom as long as Mike is an inpt. there. She is coming up to visit today so I am happy about that. We have all been very conscious to make sure she hasn't been at all left out of anything. We tell her what we think she can handle and make sure she is involved in everything since she is a part of the family. St. Francis already has a seat open for her and she will be in class w/ some of the girls she was friendly with in pre-k. My mother-in-law has offered to stay here for a few more days and pack up my car with stuff that we will need while we are at my mom's and will drive my car up for me.

So, that's the story for now. Thank you all so much for your thoughts, prayers, phone calls, etc. It means so much to me that you are all thinking about us and praying for us. We can certainly use all the prayers we can get! I will be in touch later and update when we know more. Thanks so much again! Love and miss you all


Lucinda said...

Hi Chrissie!
I'm so saddened to hear that you still do not know what exactly is going on with your little boy. I'm hopeful that you will find the answers and treatments in NY so that he can get better.
The members here in Mamapalooza have put together a package for your family and would love to give it to you. Would you be able to give me your address so that we can deliver it to you. We discussed possibly having it shipped to NY, but that ended up costing too much in shipping. My email address is Lucinda@MidnetFamily.com
You have our continued prayers and well wishes.

Kingibexx said...

I truly cannot believe this is happening to one of our babies. I'm keeping you all in my thougts almost constantly and hope you feel every positive vibe I send your way. Please take care of yourself. Mike is STRONG.

-Amy, Will, Olivia & Phineas Oliver

Anonymous said...

((((hugs))) You are one strong mama! I have something I want to send Mike, if you get a chance after you are settled, can you put the address up on a blog so I can mail it out to him.
As always, you are both in my prayers.
Gina in Palm Coast

renee said...

Chrissie, you are very close in my thoughts.
I'm in nj, and seriously, if there's anything I can do for you ever do not hesitate to ask. even if you just need someone to yell at a while. I know how hard it can be to share our pain with those closest to us. I will be thinking positive thoughts for your entire family, and really I'm here if you need anything.
with all our love- from renee and devin (another 12/05 baby)