Day Six Post-Norwood - Wednesday, December 10, 2008

"Be joyful in hope,

patient in affliction,

faithful in prayer."

Romans 12:12

Tyson was unfortunately still not extubated today. There have been concerns about the fluid in and around his right lung. The fluid around his lungs is very minimal and of no real concern since it usually drains itself once he is off ventilation. But even the surgeon is baffled by what is causing the fluid in the lung, because if it was an infection of some sort, it would be in both lungs.

We had learned early this morning that Tyson would have to have a chest tube put back in (one of the tubes that was taken out on Monday morning - this would be kind of taking a step backward instead of forward...) but then later this morning they changed their mind and said that the chest tube wouldn't be needed.
When I visited Tyson this afternoon, the nurse said yes, they would be taking him to IGT (Image Guided Therapy) tomorrow to have the chest tube re-inserted so that the fluid could drain. So nobody really knows for sure what is happening. I am supposed to be meeting with one of the doctors later this evening to figure out for sure what is going on.
The problem is a bit of a vicious circle. If Tyson was off ventilation, he could excrete the fluid better himself by coughing it up, etc. But they don't want to exubate him until they know what the fluid is. So it seems kinda like nobody really knows how to move forward until Tyson figures out what he is going to do about it. The ventilator is still turned off, while being on CPAP support mode (Tyson initiates all breathing on his own while the machine just supports him.) When they tried to turn his PEEPS down this morning, (please don't ask me to explain that one) he wasn't ready for that yet, so they had to keep him on support mode. Basically it looks like it's going to be a waiting game until Tyson can either cough up that fluid or figure out how to breath completely unsupported. So we have to patient. I know that Tyson will figure it out when he is good and ready. Once he is off ventilation, I can hold him again. But I have to be patient.
The doctors lean towards the fluid being lymphatic fluid, caused by a small nick in one of Tyson's lymph nodes. It is possible that during the surgery one of his lymph nodes were nicked and they are now leaking into his lung. If this is the case, it wouldn't mean long-term effects for Tyson since it would most likely heal itself in 6-8 weeks. BUT.... it would mean some more emotional effects on ME, because Tyson would not be allowed to have any breastmilk until after that time, since the fat in breast milk can affect the healing of the lymph node. This is a bit upsetting for me right now, but I am going to have to learn to be patient! Pumping is still going ok but of course, it's more effective and certainly more rewarding to actually be nursing a baby, not a pump! It is hard for me since there is nothing I can do for my son at this time except possibly provide some nutrients and nourishment but I can't even do that right now! And it's hard having him still on ventilation and possibly another chest tube, because that means I still can't hold him! It's hard....I have to be patient....but I had opportunity to squeeze my older two boys extra hard today!
We had a great visit with our boys again. They were thrilled not to have to go to school today since they got to meet the Toronto Maple Leafs!!!!! There are some pics below of some of the players, Kaberle and Kubina for sure and I have no idea who the other one was.....Brian told me but I forget who it is.

The whole team was there today visiting each floor...and they happened to be there at Marnie's Lounge while my kids were playing air hockey with Grandma and Grandpa Kottelenberg! We got some nice pictures and the boys got a Maple Leaf bag full of Maple Leaf goodies: pencil, erasers, funky hats, flags, puzzles, autographed photos, etc...full of goodies! The boys didn't get to have pictures taken with the players though, because they were busy with the patients from the hospital and Brian was not about to barge in and disturb them just to get pics with our kids. LOL
Brian thought it was pretty cool too! Once while they were in the elevator, Brian's Dad nudged him and said, "You better behave now!" And Brian turned around to see Ron Wilson smiling away at him! Oh what a fun and busy day!

Speaking of busy, Brian and I were also busy moving our things from the hospital parent room to the Days Inn on Yonge and Carlton. I got a phone call from Ronald McDonald House today who said that our name has been moved to the top of their waiting list and in the meantime, we can enjoy a complimentary stay at the Days Inn Hotel for as long as Tyson is in Critical Care. So since we are most likely going to be bumped from the parent room soon enough (to give priority to other parents who might need it more), we decided to jump on the offer and move out. So Brian helped me move everything over this afternoon while our kids were oogling over the Maple Leafs (although I am sure Brian would rather have been there!) The room includes two double beds and a tv, so if we wanted to have our kids stay over night with us sometime, we have that option. It means I will be walking to the hospital in the morning and back again at nights, but I like the idea of having a bed to sleep in (as opposed to a pull-out couch) and my own bathroom and shower, my own fridge, and I will have a tv to watch for those nights that I might have trouble sleeping. There's also a pool and hot tub, etc there so if we had the kids over one weekend they could enjoy that as well. We are hoping not to be here too much longer and then be in a room on the 4th floor with Tyson, at which time we would have a bed, tv, bathroom, etc. But again, we have to be PATIENT!

So that is what is up for today. Brian went back to Orangeville today with the boys and will hopefully be back to see me again on Friday night. Saturday is my parents 35th wedding anniversary celebration and we hope to go back to Orangeville for that too. I have made arrangements to rent a pump and will also take it back to the Days Inn with me, since i think they charge a flat rate after a certain length of time using it. And seeing as I might not be nursing Tyson yet even after we go home (depending on if they can figure out what the fluid is or not...) then it will come in handy at home too.

I was talking with Keith today (remember the Christian couple we met whose son had the same surgery as Tyson 6 months ago) and he says there is a way they can still feed Tyson breastmilk called an EBM study. It basically involves skimming all the fat from the breastmilk and giving it to them that way, then they still get the nutrients and antibodies from their mother. This protagin stuff they give instead does not really put fat on their bodies like breastmilk can. So I will talk to the head dietitian Sara Farmer sometime tomorrow about that. Another waiting game.....

That's all for now,
Mel:)