Some of you might think that we've dropped off the face the of the earth. Well, we haven't, it's just been a tremendously busy spring.
In March Braden was admitted to the PICU, admit #37, with what we thought at the time was a possible blood infection. He had some labs drawn on a Thursday, and the next morning we received a call early from his pediatrician. She advised us that we need to get to the PICU right away. His labs came back with a possible staph infection in his blood.
We were directly admitted to the PICU at OLOL and within minutes they had started a broad base antibiotic. They took a second set of labs to compare. Needless to say, we were quite worried because this has never been an issue for us. Four hours went by, nothing was growing in his labs. Eight, twelve, sixteen hours later still nothing coming back. After the first 24 hours it was concluded that the original set must have gotten contaminated. Our medical team felt awful, but as I assured them, I would rather go through this 100 times and it be wrong, then the one time we don't and it's actually a problem.
In April, Braden was admitted again, #38, because his belly had become distended. As you can imagine he was in a lot of pain and we needed to get the trapped air out. Once he was in his room, they hooked him up to a pump to syphon out the air. The docs determined that it may have been caused by a mixture of some of his meds. Because Braden doesn't move that often, he has a tendency to have air not pass through his system regularly. After going through his chart and resuming his feeds, he was able to tolerate it and we were discharged after a few days.
Also in April, we invested in getting Braden an iPad 2. Naturally he does not receive any direct benefit, but we got it to transcribe his chart onto. His charts are so large, we thought it would be wise to download the material and save it to the iPad. Which ever one of us goes to his appointments with him takes it and records his visits. It has come in handy in recent visits because his meds are loaded into the program as well (My Medical for iPad).
During the later part of May we made a visit to our docs in Houston. This past spring we have reconnected with many of our docs at Texas Children's and UT-Med. We now are on a 3 month rotation with them and so we"ll be make more frequent visits. We are seeing a Mito-doc, Immunologist, geneticist, and his epileptologist. We've had some good conversations and hope to continue to pursue answers. Certainly Braden's diagnosis won't change, but we hope to find answers to what it means if we have additional children.
That is just a quick snap shot of what our spring has been like.
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