The endless cold and the fearless wrestler

I have been meaning to post for the last 10 days but have been stuck with an endless cold rendering me essentially useless by the end of the day which is the best time for me to try to update things... after the kids are down and it is quiet. Interestingly, Peter had the bug for only a day and a half, though he has a persistently low white cell count in his labs and has for the last two years at least. It is a whopper of a cold though, striking every one of us plus one of the nurses that works in our house here. It seems to be rebounding on the kids including Peter today.

Peter's albumin yesterday was down from 2.9 to 2.2 and he acts like he is holding onto fluid in the abdomen in his breathing and gait. We hope it is just the cold! When he has been hit with a good illness in the past we would see his albumin get down below two and he would swell up, needing IV albumin and lasix to remove the fluid. I don't see the swelling taking over like in the past, so hopefully he is pulling out of this on his own already.

Prior to the cold we actually have seen some great progress with Peter physically. He still can't jump, but he is doing a whole lot more self moving when playing which imitates many of the positions PT wants him to work on. Also, what is really a big leap forward is that he has started to enjoy crashing into his brothers and rolling around on the floor with them in mock-wrestling moves. His speech is coming along beautifully and he is using full sentences with occasional pronouns and making conclusions about what someone may be feeling based on what they are doing - ie, if I am holding a cup, "Mommy is thirsty."

We are still perplexed with the urinalyses that we are getting over the last few weeks. There is still large amounts of microscopic blood and there is protein in the urine. We are to find a kidney consult locally to see what is happening. We also still are trying to understand why he holds onto fluid as he does. Children's Boston lowered the sodium in his TPN even lower, but so far we don't see much change. But again, perhaps that is because of the nasty cold virus and the proneness to holding fluid when ill. Maybe the kidney consult will give us some clues.

We are still at 30ml per feed with the elecare but have added a tiny bit of stage 1 fruit again. Peter can detect the probiotics in his elecare and we have been seeing an aversion to the elecare, seemingly out of fear that it will not be the pure elecare but will have the probiotic in it. Putting the probiotic in the baby food is so far working out well. We are now trying Florastor probiotic and have great hope that will work as well for him as it has in other "intestinal failure" patients. (I don't particularly like the term intestinal failure and almost panicked when I first saw it on Peter's chart, but it does not mean that his intestine is failing and has no chance, in case you were wondering.)