Since Jonah's cardiology appointment last Friday, the only real change made was to give one less dose of diuretic and, as of this weekend...sort of unofficially...we are going to give it a go without oxygen overnight.
On Sunday morning we woke up to hear Jonah saying "owie owie" on the monitor. He wasn't crying, just sounded annoyed. I figured he was trying to pull the nasal cannula off his face which we taped to the side of his cheeks to keep in place. When I walked in I found this to be true but also discovered the tubing of the nasal cannula (which is all one piece) had wrapped multiple times around his neck and pulling tight from the machine delivering the oxygen next to his bed. Yikes-beyond scary!!!! That was all we needed to pull he plug. We had been afraid of this possibility the minute the equipment came in to our house...especially with the way Jonah sleeps...any way you rig it, the possibility is just always there.
So last night we decided to leave his oximeter probe and machine on all night to get an idea of Jonah's real oxygen levels while he's asleep. We haven't done this...ever, actually. But in order to feel comfortable without the oxygen we needed to know. While reading books in Rob's lap he was about 94-95%. When we peaked in his room before we went to bed we saw 97%!!! This was such a relief and was enough proof for us that Jonah does not need the supplemental oxygen at this time. Tonight, we set the monitor up again and are hoping for the same numbers!
Eating has definitely become more of a challenge as the days go on and we think the meds are playing the biggest part in this-for so so many reasons. Jonah appears to be much more gaggy with foods of a certain mushy, sticky texture. Right now, it's pretty likely we can relate that to the attempts we made to mix medications in things like his yogurt, applesauce, oatmeal, bananas...all his favorites pre-surgery :-( He definitely does not have a vigorous appetite either. Meds, change in blood flow to his gut, and maybe even bad timing on new molars equal Jonah barely picking at noodles, Cheerios, and chicken. We are 3 weeks from the Fontan and it has been 3 excruciatingly long weeks of watching this. It is truly wearing on us. Besides being dehydrated, he las lost at least 2lbs.
Tomorrow we will be checking out our local lab for Jonah's INR level. In two weeks we see cardiology again to fine tune things yet again and definitely do an Echo/EKG. In the meantime, we hope to have more days like this...