Friday, November 14, 2008

Update

Keegan has had quite a few ups and downs the last few days. His fever has broken; he's gained a touch of weight, and he has had a good attitude most of the time. The cystic fibrosis bloodwork came back negative, and his blood counts aren't dropping as dramatically as we first thought. He's been hanging out right above the transfusion levels since Tuesday. We know he's not sufficiently making red blood cells right now, so we're watching his counts carefully. However, he's still having multiple, mucousy stools a day (15 yesterday, 17 the day before). Of course, that makes his bottom hurt, and he gets very crampy when they are the most frequent. GI has made a few changes to his orders. The transplant team had been wanting to increase his feeds by 5ml each day; his stomach reacted violently to that, so he's back down to 15ml/hour and won't start increasing again for a few days, then at only 1 or 2ml each day. That being said, Keegan is only made the small amount of weight gain he has due to the TPN going directly into his blood through his port. TPN is pure nutrition, and all your organs have to work harder to process it than if all your nutrition is from food. Usually, kids can go several weeks to months without too much trouble, but Keegan's liver is already showing some problems. We will have to start cycling his TPN off for several hours a day to give his system a break. Obviously, that doesn't help in the weight gain area, and it makes getting him to take more formula a day more urgent. We've also added some fiber to his formula in hopes of helping his system absorp more calories. They stopped the preventative antibiotics they started during his latest fever, and GI started him back on flagyl, which was what he took to kick the c-diff infection. They said it can help even out the bacteria in his GI system. I don't remember if we posted that, but the biopsies and stool studies showed Keegan has very little "good bacteria" left in his stomach to help digest his food.

Yesterday was dressing change day for his port, which means taking the dressing off, taking the needle out, and reaccessing his port. Fun, right? Remember that the week before, he ended up with the needle out of place and TPN pouring into his skin. So, yesterday it looked like everything went ok with the reaccessing, but Keegan was very agitated afterward, pulling at the skin and plastic protector over the port. He usually doesn't do that, but his skin was pulled pretty taught under the new dressing. His stomach was hurting him quite a bit, so we just thought he was overall not feeling well. This morning, however, the dressing and his pjs were wet with TPN (you can tell because it's yellowish and smells a bit like vinegar). That meant we had to take it all apart and put Humpty back together again. This time we called the access team in to help, and this one looks pretty good. Through all that, he was still having stomach cramps and several dirty diapers. Now, what would a stressful morning of crying, straining, and poking be without your ng tube flying right out of your nose? Add insult to injury, right? So, I was able to really get him cleaned up, a new tube in, and cover him in pink baby lotiony goodness and some new pjs before he crashed for a much needed nap. What a way to start the day...and Friday to boot.

So, you're probably wondering where we go from here. The last genetic test is still pending, could be as late as Tuesday before it comes in. Hem/onc (hematology/oncology) initially wanted to wait until that came back to schedule Keegan for a bone marrow biopsy, but GI and the transplant team asked this morning if we couldn't at least get him on the schedule for next week now, so as to not waste time next week fitting him in. I haven't seen Dr. Scott, Keegan's hem/onc doctor, since the beginning of the week, so I don't know what the decision is on that yet. GI is going to reevaluate his biopsied tissue and bloodwork for some other transplant-related problems, and they may request another scope to take tissue from different areas in case they happened to miss something. Unless his fever comes back over the weekend (it seems to be about once a week, but you never know), they will likely not draw labs again until Monday. If we get more information, we'll surely post to let y'all know.

We are so appreciative of your prayers and thoughts for Keegan. He is just the strongest kid I have ever known. It hurts me so much to see the struggles he faces daily with a smile. I know that most any adult would be beaten down by this point - but not Keegan. I pray that he never loses that faith and good attitude because I know that this is just the beginning of many more hospital stays, illnesses, and challenges for him. We also appreciate your prayers for me and Gray. We feel so lost some days, and I think the word frustrated doesn't even come close to describing how we feel. We have grown pretty tired of fighting a beast we can't see and can't name. Dr. Fixler said yesterday that we "don't want" this illness to be the bone marrow failure disorder that we've sent the last bit of genetic testing off for. Well, we didn't want Keegan to have a heart transplant or be immune-suppressed either, but we learned to accept it. Just knowing what Keegan's fighting (good, bad, or in between) will be a relief. We can learn to adapt; we can learn to cope. We can fight and manage and treat what we know. It's the unknown that is such a giant risk to Keegan's heart and system, and I know that none of us will give in until we figure this out. We ask for your prayers for Keegan, our family, and every doctor and specialist in this search - that we all maintain the strength, patience and fervor needed to search and fight until an answer is found. Thank you so much, and we'll keep updating as much as we can. Don't forget to keep checking his pictures and videos because we're not always sure when we'll get more posted on that site. Thanks!