Sorry I have not been on here lately. I do check in and read posts or search. But with reduced nursing hours, work getting more hectic, my daughter crawling everywhere, my husband in school, and my daughters swim lessons I seem to have less and less time. I just wanted to update you guys on my LOs surgery yesterday.
So he went in for ear tubes (fluid in his ear that has never allowed them to do a hearing test), testes brought down, circumcision, airway scope, nose scope, possible balloon, and hearing test.
So to give you a little history if you don't remember. He got a trach when they couldn't establish an airway for a nissan and g-tube surgery. They didn't know why, but said he would need the trach for a month. Well a month turned into two, then three, etc. he eventually got a scope 4 months after he got the trach and it showed that he had stenosis and it was probably from when he was intubated as a baby. they said he would not grow out of it and would need major airway surgery to get the trach out. They wanted him older to do this. Well he eventually went on a vent for CO2 retention and started to quickly improve in all areas (no more O2 needed, we started to fix the reflux, etc). He also started making noise with the vent, which none of the doctors understood how.
So fast forward to yesterday. Our ENT thought with the noises his airway improved and that they might try balloon dialation to see if that allows them to skip surgery. I read on here it didn't work for most, so I didn't have high hopes. Well the doctor came out of the OR and said his airway is completely open and therefore they never did the dilation. He said that getting rid of the secretions, reflux, and throwing up must have somehow helped it and well there is no stenosis anymore. ALL of us were and still are in shock. So now the plan is wean off the vent, then do capping trials to eventually get rid of the trach. He does have a narrow part, but we were told it is soft tissue and should not cause any issues for him to be decanned.
So now for the other news. The eartubes were placed and they said there was some structural issues they saw. They later came out after the hearing test and told us he can only hear high pitched tones and will need hearing aids. The doctor doesn't even want to discuss surgery until he is older because as he said, who knows with Johnny, he may just outgrow this too. So while bad, honestly I was expecting it. I knew he could only ever hear certain noises and so it makes sense. But with the ear tubes he can hear better today than he did yesterday and with hearing aids he will be able to hear better with them than he can today. he can hear language, which is good. So overall I think it was a successful day. Now onto recovery because he is not happy about the pain from the testes