Wednesday, December 10, 2008

Update

I apologize for the lack of posts. Once again, we are victims of the hospital wireless networks. I can now access this website. I still can't get on his photo site, and boy oh boy, do we have some pictures for you! We'll figure out a way to get them up, so keep checking. More on that in a minute. Now, are you ready for a marathon update?

First things first, how is Keegan doing? His attitude and energy are still the same. He loves to flirt, and he is still cruising the crib. The last few mornings he has been pretty ornery, but he improves after his morning nap. He still sleeps much more than other kids his age - won't see me complaining about that though. The infection and bone pain caused by the GCSF caused him to regress a little on his walking/standing unassisted in the last week. Today though, the physical therapist thought he did so much better. We had negative cultures late Saturday, so that was considered day 1 of 10 on the IV antibiotics (ten days will be next Monday). However, ID (infectious disease) said not to celebrate too soon because sometimes they will still get a positive culture towards the end of the 10-day cycle, a sort of sampling error if you will. So, we'll have to check that again. If the next set of cutures is negative at the end of the antibiotics, we'll consider the infection cleared. He's been fever free since last Friday now. We stopped the GCSF over the weekend because his white count and neutrophil counts were up, but they have come back down now. His ANC is 870 today, so he's again moderately neutropenic. We will probably check again tomorrow. I anticipate if he drops below 500, they will start the GCSF again since he is being treated for an active infection. His red counts are coming back down, and if they continue at the current rates, he'll need blood again at the beginning of next week. Friday will be three weeks since his last transfusion. The last remaining send-out labs for bone marrow failure disorders should be back next week also.

On to GI issues now...Keegan's liver enzymes skyrocketed despite cutting his lipid and TPN rate the last few days. That alone caused him to lose a bit of weight each of the last three days, and now, we've had to cut his TPN down to 14 hours a day. That helped bring his enzyme levels down a bit, but he'll probably take another cut in his weight. We are trying to counteract that by increasing his calories in the formula a bit. We also are doing a trial run of a bile salt binding medication to see if it helps. Supposedly if he has a bile salt absorption issue, this medication will work for an immediate result. If it doesn't, then he is absorbing bile salts fine, and we'll stop the med. No harm, no foul. We're trying this because we haven't seen as much of an improvement with the pancreatic enzymes as we had hoped. He's only had two doses of the bile silt binder, so we'll see how he does after 24 hours on it. He's down to about 6 dirty diapers a day, and yesterday he was back to 18 pounds from 18.3.

We met today to form a plan for going home. Keegan will need to be cut down to 10 to 12 hours of TPN a day (preferrably 10) and at a volume/caloric combination of formula that he at least maintains if not gains weight over a 2-3 day period (meaning his weight can fluctuate a bit, but he needs to at least not lose weight continuously). Additionally, his liver enzymes need to come down closer to normal. The plan for now is to maintain 14 hours of TPN, increase his volume by 2ccs/hour on Friday (and again on 2 day intervals), and check his liver enzymes again Friday or Saturday. We won't cut his TPN again until he's at a better caloric intake of formula to support his weight. If his liver doesn't seem to be responding to TPN adjustments as expected, we will have to (in the words of the GI attending) "broaden our evaluation" for different causes of liver failure. To that end, the only other thing they're checking as to his liver is whether he has been exposed to rhinovirus (the cold virus), which he obviously hasn't since he has no runny nose or cough or anything. Evidently, that can cause the liver enzymes to go up, but until those cultures come back negative (as we're expecting), Keegan has been put on contact precautions. That means everyone supposed to wear the isolation gowns, gloves, and masks. It also means he can't leave his room. Oh what fun. The TPN and formula combination is an extremely delicate balancing act, and it is completely up to Keegan and his system as to how quickly or slowly we can find this perfect mix of TPN, formula, and making his liver happy. We need to be able to support Keegan with this mix at home so that he can focus on outpatient feeding therapy, which will take some time.

Now for the fun stuff! Monday was exciting. The morning started off with a visit from the Dallas Cowboys and the cheerleaders. Keegan got to meet Jason Witten, Demarcus Ware, Marion Barber, Kevin Barnett, and a few others. We have pictures of that to post obviously. He was a hit, high-fiving all of them down the line. It was hysterical because if they asked for a second hi-five, he would shake his head "no." They were all very nice considering Sunday's loss, and Keegan got an autographed team pic and a Cowboys teddy bear to keep. Monday night was the Children's tree-lighting ceremony. We went outside to watch. Thankfully, it was warm but windy. We saw the Borden's cow, Elsie, on her Little Red Engine train. Very interesting. Then, Santa and one of his reindeer, Vixen, came to help light the tree. Santa said in his many years of coming to Children's, Keegan was the first baby to reach for him. I guess most are scared of Santa but not our Bug! Keegan also launched himself into the arms of Miss Texas, prompting Gray's lovely response of "that's my boy!" There are plenty more fun holiday happenings in the coming weeks here, so we're hoping Keegan will be able to participate in many of them while he's here. Please continue to check his picture site as we try to get access to be able to post pictures of Keegan's adventures.

GI and transplant team said today that while it is still possible, they are making absolutely no guarantees at this point that Keegan can or will be home for Christmas. We're ok with that for now. We want him home when he is ready and stop this bouncing back and forth. At least now we have concrete goals for getting there. Thank you so much for your prayers and love as always. Hopefully by posting his "going home goals", we can reach them easier and faster with your prayers. Thank you so very much.