LONG Day~ Double Ear infection, Tubes in the future but still smiling
Yesterday scared the crap out of us. Porter was laying on his right side and I was behind him calling his name and he didn't respond. I clapped some blocks by his ear~ nothing. Turned on some music toys~ nothing. Had Oliver call him (he always responds to Oliver) ~ NOTHING. He couldn't hear out of is left ear from what I could tell. We have been waiting and waiting for audiology to be able to see Porter but when he didn't respond yesterday I called and demanded someone see us when we were there for our other appointments today. They got us in for an add on appointment and confirmed fluid in both ears. Porter had a blood draw, saw Pulmonology, ENT, Urology and Audiology today. Pulmonology is concerned that Porter is still breathing fast and wonders if the Phrenic nerve that controls the diaphragm was damaged during transplant. If so it is able to be corrected via surgery. They are also concerned with an area in the back of his throat that that they saw during his broncoscopy that they would like to biopsy and they want to put tubes in P's ears. Oh~ and there's still the issues of his testicles. They haven't come down yet so that surgery is in his near future. Within the next couple of weeks Porter will spend some time in the PICU~ he will have a sleep study followed by tubes in his ears, biopsy in his throat, ultrasound of the diaphragm and potential surgery on his diaphragm. He's on a strong antibiotic and ear drops to hopefully clear up this ear infection. The previous antibiotic he was on was not working at all. Even through all of this - he still finds it in him to give us his beautiful smile.
We have asked the pulmonology team at UNC to consult with the folks at Cincinnati Childrens Pulm department as they are recommended from the Noonan's Foundation as top in the field. We'll see what they have to say about Porter and his lung function and ways to wean the vent and trach. We'll see what they say.