Thursday, December 29, 2011
Things have been busy, yet uneventful. This week has been one of milestones, though. Monday we lowered his dextrose prescription down to 1.5%, because his blood pressure was too low. Go figure, a child who was once on two separate medicines to control high blood pressure, now has pressure readings that are too low. It's amazing, isn't it? Tuesday we lowered his dialysis therapy time down to 9 hours and 40 minutes instead of 12 hours! It is great that he gets to spend less time locked to that machine and his crib. It allows us all to lead a little bit of a more normal life. Finally, Thursday morning, Parker weighed in at 5.01 kg. Remember, he has to be 10 kg for transplant. Therefore, we are officially half way there! I never in a million years expected us to get here so quickly. It hasn't been easy by any means, either. There have been plenty of days that we've fought for him to eat. Today has to be one of the worst of those. He is officially teething! Yes, you heard that right. My little baby is becoming a big boy and getting his first tooth. He is more interested in chewing his bottle tip than actually eating from it. It is only one more challenge to add to the long list we already have, but we will get through it. Here are a few pictures to catch everyone up.
Yes, those are Christmas presents giving him a boost!
Thursday, December 1, 2011
I know it has been a while since my last post, but as the old saying goes "No news is good news". Since surgery things have been relatively uneventful, until this week. On Monday night I noticed that Parker's temperature was a little elevated. It was higher than normal, but nothing to be concerned about. Then on Tuesday morning, it spiked to 101 degrees. We spent all of Tuesday afternoon at the pediatrician and most of the evening-until 8 ish- at the hospital getting blood work, specimens, cultures, etc. You name it, the test was done. Things are so much different with him than a normal baby. We had to rule out everything from a viral infection to severe peritonitis. His lab results seemed fine, and his white blood cell count was normal. In fact it was only 7 and we aren't told to report to the ER until it reaches 100.They gave him a strong antibiotic shot just to be cautious and we came home. Well, when we got home, I connected him to his machine immediately, but things weren't as good as we thought they were. His dialysis fluid became cloudy around 10 o'clock that night, which is a sure sign of peritonitis. I was so upset, I cried myself to sleep. As a parent, who administers his dialysis, you almost feel like you are at fault. Like you caused this to happen. Like you weren't careful enough or sterile enough. You feel like you did this to your child. It's pretty much the worst feeling ever. Anyways, the next morning they re-did every test possible. I was a nervous wreck all day because his lab results, which were taken at noon, didn't come back until 10 PM! Low and behold, his white blood cell count came back at 89. We left bright and early this morning to go to Children's and we spent the entire day there. Once again, a full spectrum of testing was done. Parker was diagnosed with a mild case of peritonitis. We caught it early enough that we can give him antibiotics at home in his dialysis for the next 2 weeks. If it had been severe, we would have been admitted to the either the floor or the PICU for IV antibiotics. We are extremely lucky this time. I say that, all the while hoping and praying that there is never a "next time". Parker is already feeling better and is acting like his normal self again.