So during the course of Kai's castings he started to break out behind his legs. We figured it was just from rubbing against the cast but it continued to get worse. Then his face started to break out. We were told it was an allergic reaction behind his legs and eczema on his face. We took a break from casting thinking his body just needed to have some time to heal. We waited a couple of weeks and after the first casting back, he immediately started reacting (feet turning purple, feet swelling, etc).
During this time, Kai's face started to turn red. It started out small. Just a couple little patches. Then it started growing...and growing...and growing. Then his face started breaking open with sores and weeping. Bumps started appearing in clusters on his back. We were getting more and more concerned as everything we were trying wasn't working. We were given steroids, anti-fungals, ointments...nothing worked. We saw 9 doctors in 5 weeks hoping someone could give us an answer. Finally, our pediatrician made arrangements for us to go to Seattle Children's ER to possibly be admitted as we had exhausted all our options here. So, on a Friday, February 28th, we drove from Sunnyside to Seattle, praying they would admit Kai and help us. They did.
Kai was diagnosed as having a super staph infection in his face. For four months our little guy had staph growing on his face and body and it was missed! We couldn't believe it, but luckily it was treatable! They gave him IV antibiotics and things started to improve. While we were there, and after talking to the attending, they decided to keep him longer to try and figure out what other "problems" there were with Kai as we hadn't received the genetics test results back yet. We were in the hospital 8 days total, but in those 8 days, we met with a dozen different specialists and had different tests run. 6 months worth of appointments done in a week! Very crazy! We are so appreciative to them that we were able to get some answers and tests completed!
One of the tests they ran was a swallow study. The doctors were concerned as Kai hadn't gained weight in several months (since the "rash" first appeared). The swallow study came back as showing he was at "severe risk" of aspiration so they put in an NG-tube through his nose. That was the LONGEST 48 hours of my life! He and I were both miserable! (He was still exclusively nursing at the time so when they did the tube, they made him go cold turkey.) I couldn't hold him without him getting frustrated cause he wanted to nurse! Michael and I sat one night and had a long discussion about what was going on. It didn't feel right to me to have the NG-tube. Kai had NEVER had any respiratory problems. Not even a cold! With all of the trips to the doctors' appointments he'd never caught a bug of any sort! Their whole concern was based on "what-ifs". We decided to really pray about it and after our prayer we decided we needed to have the tube taken out.
The doctors were not happy when we insisted to have the tube taken out, but we are SOOOOO glad we did! He returned to his happy self and everything became right again!
Two weeks after returning from Seattle, Kai started to have the rash appear again. He wasn't acting like himself and things just seemed to be heading backwards again, so on Easter Sunday we headed up to Memorial in Yakima this time to have it looked at. After explaining to the doctors about Kai's condition (which we had confirmation of by this time) they decided they needed to admit him and started him on IV antibiotics again. This time he was only in the hospital 3 days, but it seemed to do the trick. They had us follow up with Seattle Children's Dermatology, but they couldn't explain why the staph had come back again. What we think happened was when he was given the medicine in Seattle, they dropped the strength of the drug too quickly so it didn't fully kill the infection before we were done with the medicine. They used stronger drugs in Memorial for a longer time so it killed off the whole infection. Since his second hospital admission, he's been staph free!!!
Poor little guy has gone through a lot!
