Sunday, March 07, 2010

28th admit to OLOL

We brought Braden in on Wednesday, he quit peeing on a regular basis, and was only going once every 12 hours... not at all his usual 8 times a day. It was a bunch of other "little" things that was adding up to a picture of things just not being right. We had to put him on oxygen because he wasn't keeping his oxygen saturation up, his bm's had gotten really loose and infrequent, his temperature was low, etc.

They started running tests and decided to admit him to the PICU and treat for possible sepsis... they thought this because he was hypothermic and not giving output or possibly fighting an acute virus. Once we'd been on the unit 24 hours, the tests showed he probably was NOT septic, but definitely had other things going on. They had started antibiotics (generic) right away... so 2 days later when he was diagnosed with a tracheitis (again), we were already 2 days ahead on that. Later studies would find he was fighting strep pnuemonia bacteria... if you are alerted now, we were too - as this is one of the big ones we had that almost took him at 8 months old. However, this time he's fighting the BACTERIA, not an infiltrated pneumonia in the lungs... so a new 7 day antibiotic will cover us... respiratory all in check now.

Because Braden has a mitochondrial disorder that affects the muscle function, we met with several specialists. We did an echo on the biggest muscle, his heart, and got the all clear there - still don't have to follow a cardiologist in clinic. YAY! Great news that we don't have to worry about that on top of everything else.

We met with the dietician to review his caloric intake and overall volume... her latest chart showed Braden coming closer to the curve for his BMI (body mass index). Great news, as forever his height and weight have been disproportionate and have kept him off the curve for a long time. He still is, but he's coming closer to getting ON the curve:-)

His hypothermia is now a result of the same neurologic disfunction we've seen since birth, we are just used to dealing with the high temperature side, not the low temperature side. He seems to have evened out for 3 days now, not requiring use of the Bair Hugger... which looks like a blow-up air mattress for the pool, that blows warm air down to the patient.

We consulted with the GI doc, and have agreed on a new plan of care for Braden in that area as well. We are seeing a slow down in his ability to break down his food, and in intestinal function, but he is satisfied with our recent adaptations to his feeding regimen. We will adjust some supplementation to address some issues here.

Our final frontier is renal and urology... the ultrasound a few days ago showed Braden's kidneys are more cauliflower shaped instead of rigid bean shaped, which affects how they function. It showed that parts of his kidneys are calcifying, so we are adding supplementation to deal with the build up of calcium, and adding vitamin D and other things to help with the loss of calcium from his bones due to his lack of mobility. His bones are becoming thin and fragile, the vitamins should help address that for now. Tomorrow an ultrasound on the bladder will tell us if it's emptying all the way. The good news is that when the catheter was removed, he's been back to peeing on his own... we just don't know yet HOW well the bladder is doing on it's own.

It's unknown why his urine is carrying so much mucous, but we do know that it's NOT normal, and we will have to continually monitor Braden for future blockages.

We hope to find medication or supplementation intervention to resolve our issues for now, but surgical options may lie in our future. For now, just pray that God will lead our specialists to the answers that are right for Braden.

Thanks for checking on us, our hope is that we get to go home tomorrow, but only time will tell.

Braden, Brad & Kodi