Heath is the joy of my life I would not trade him for the world.
On Dec 5th he had his sleep study and it was not a fun night at all. It started off with no issues I fed him dry cereal as they got him all hooked up and ready. And since he did not nap during the day he went down fine. But that only lasted a short time and he was back up because of the apnea and after his power nap he wanted to fight me going back to sleep and cried for 40 min before I got him to lay back down with me and nurse to sleep. By 2:50 he was back awake and pissed by 3:15 and I was tired so they just came in and said they had the data they needed and let us go home.
Wed they called and said his sleep study showed he still has bad aopnea so our ENT apointment needed to be changed from Jan 20th up to Dec 14th.
We arrived on the 14th and had a new dr (someone they switched us to because of his now long term apnea) This dr had the best bed side manor. Right off the bat I liked him. I did start off by saying he only could see back in the chart to Aug and about the ear tubes and asked if he could check them. As he was looking in his ears (BTW both have fallen out). He noticed the O2 and asked had Heath only been on o2 since the past study on the 4th. I said no he has been on it since he was 2 weeks old. He said "oh you are the one with the baby with the OSA, I have heard of this little man" The ENT then wanted to know who the lung dr was. I said we have never seen one and right way that was a red flag for him. He said to the nurse get her and before I knew it the pulmonary dr was in the room asking us questions. They where shocked that I had a baby on o2 for so long and had never had a referral for one. He looked in his mouth and said he agreed Heath's toung is large but he has flat almost nonexistent toncles. And asked if he could scope him to look at his adenoids to his vocal cords.
He sprayed in his nose with some numbing agent and was impressed that other then 1 sneeze Heath did not care about that. When they came back in the room he asked if I wanted to step out, watch or hold the baby. I said I would hold him and he warned me Heath would have to be kept still and to hold his head still and arms down. He put the scope in and Heath did not move he did not care and watched the screen with us :). Let me tell you everyone was impressed. Heath's adenoids are so large that they are almost touching each other this could enplane a lot of his snoring and apnea.
We go and see the pulmonary dr at the CF clinic on Jan 11th and as long as they clear him for surgery we will schedule him to have his tubes put back in and adenoids removed. The surgery will be at min a 24 hour PICU stay and because of his history it could be another 4 days of hospital stay.
If this dose not work we could be looking at a tracheotomy. The ENT's do not want to do the tongue reduction because of the morbidity risks (5 day PICU stay and up to 3 weeks in the hospital) and it has no guarantee to work. Also because of his hearing loss and motor control Heath is already set up for talking difficulty and we think messing with the tounge would not be the answer to that. Part of the tongue reduction would be to give him a trache anyway so this way we can try things in steps. The tongue reduction will not be needed once he has a trache because it will bypass the obstruction and could take away the need for the o2.
But pray that the adenoid removal is the answer and we won't even have to do the trache. The big concern is he is not growing out of it and his gas exchange Co2 is getting worse. They are also concerned about his hart and brain because of the hypopneas. The CT scar came back normal. Today he is having and ECCO to check and see if the hart is working to hard or getting enlarged from all this.
Sleep study results; 244 min of sleep in that time. He had 27 arousals, 6 apneas, and 35 hypopneans, and only spent 1.2% of the time in REM state. His co2 levels ranged from 23-56 and the pluse ox was and over all love of 86%. We also need to do some blood gas work. And are back up to .5L of o2.