Saturday, December 13, 2008

Update

Not much new to report today. We finally got access to the picture site this morning, although I’m pretty sure it’s a fluke. I was told at a hospital committee meeting that they are working on getting the networks ironed out, but it will be awhile. I’m sorry the posts have gotten to be fewer but longer. On a day to day basis, things don’t change that much. As GI said yesterday, it’s more of a trend than a daily observation. If it’s ok with everyone, it’s much easier for me to post this way.

Keegan continues to be in a good mood, and we love to see him make the nurses laugh outloud. It's a little too soon to say for sure, but I really think the bile salt binder is working! It may even be helping his liver as an added bonus. Thursday, Keegan only had two dirty diapers and on paper seemed to gain some weight (unfortunately, he was weighed on the "bad scale", the one that is always off). The transplant team got excited yesterday and wanted to increase his feeds again after just increasing them yesterday. When they called GI to confirm, GI got mad basically. GI came to see Keegan and was clearly not happy that the team was trying to change their plans. This has to be a slow and steady progression to allow Keegan's system time to adapt. We have been through this formula progression 4 times already where he does well, they push him faster, and he regresses. GI finally had to put their foot down, so to speak, about staying the slow course. Of course, his weight was down again today, and he's had five dirty diapers, seems to be working on another one as I type this. On the plus side, his stools do seem to be less watery. That's certainly an improvement! Also, Keegan's still neutropenic, but his ANC hasn’t gotten into the severe range yet. Yeah!

Tomorrow, we will increase his feeds by another 2ml. If he does ok with that, we'll increase the calories to 24kcal/oz on Monday. If he does ok with that, then we'll go up another 2ml an hour on Wednesday. If his system tolerates that and his weight is within the acceptable fluctuation, we'll cut his TPN to 13 hours. GI said today that assuming all other things are ok, if he's doing ok on 13 hours, he can go home. That means the staph infection is gone, his liver enzymes are at an acceptable level, etc. Monday we will run an enormous set of labs - blood counts, drug levels, liver and kidney function, fat soluable vitamins, zinc, iron, and probably some other ones I've forgotten. We also will do another set of blood cultures from his port when his antibiotics are done; Fixler said this morning we’ll do that Tuesday, then of course the obligatory 48 hour wait. The remaining send-out labs for genetic testing and autoimmune neutropenia should be back Monday or Tuesday.

We are certainly encouraged by Keegan's progress, but we are also cautious in our optimisim. We are not expecting a smooth ride through this plan, although we would be thrilled to be surprised! Even when we get home, then what? Another twist to Keegan's road. We are so grateful for your prayers. Just realizing how far Keegan has come in the last two months - the power of prayer and the mercy and grace of our God is amazing. Many of you have said you prefer to have specific prayer focus, and sometimes that is very hard to put into words. I spent a lot of time reflecting in prayer last night, wondering exactly with what it was that I needed or even should be asking God’s help. I think it is this - please pray for comfort for Keegan during this transition to less TPN and more formula. We don’t ask that it go perfectly, that there are no setbacks. We just ask that the Lord help Keegan find his balance on his own time and that he can go home at the right time, meaning when he’s ready to stay home. That is our ultimate wish – to go home and stay home. The sooner the better, obviously, but more importantly when Keegan is ready and stable.

Tonight, I would like to ask you to add two more kiddos to your prayer list. Nate and Avery. The moms of both of these amazing kids are on my hospital workgroup. Nate is 5 years old and currently in the ICU here at Children's. He is very sick, and he needs your prayers. Please pray that Nate's ph levels come down enough that he can come off chemical paralytics. Avery is 3 years old, and thankfully, she is home right now. Avery has had quite a few concerning labs lately, and she continues to struggle with many GI issues. Please pray that she is able to fight her battles at home and that her pain and discomfort is reduced. Thank you so much for including these little angels in your prayers.

Check out our new pictures and a little video from the Children’s tree lighting last week. Have a great one! More later.