So sorry it has been a while since I have updated. It has been quite a roller coaster ride the last few weeks. Very emotional for this mommy! We went from being in an open crib to back in a radiant warmer bed so they could watch him better. He started having more events more often. We have stopped and started feedings several times and as of right now they are not feeding him.
Earlier this week they started him on a second seizure medicine to help control his break through seizures. The reason they stopped his feds is because he has really bad reflux and with him still dropping his heart rate and oxygen level due to seizures they wanted to focus on fixing one thing at a time. It's also bad to feed him when his bowel isn't getting enough oxygen. (When he has events his body naturally sends the oxygen to his brain and heart and it pulls it away from his bowels and if that happens enough when he is being fed it can perforate his bowel.)
For several weeks now I have noticed that when he has some of his episodes he squirms around, makes a grunting noise and then holds his breath. Today we had a new nurse and I mentioned it to her as well. "I said he does this every time. I don't even have to look at the monitor to know he will have an event." She said "every time"? And I said yes. She asked if he had ever been seen by an ENT doctor and he has not. She thought he might have a problem with his throat. I asked if she would bring it up in rounds today and she said he would. When we went back at 11 our favorite Neo Dr. was examining him and agreed with our nurse that he might have Laryngomalacia which is when his larynx is floppy and it will sometimes close off his throat and cause him not to breath for a few seconds. They agreed that he needed to be seen by ENT. The ENT doctor was able to come by this afternoon and did a scope of Jaxson's throat and confirmed that he does have a mild form of the Laryngomalacia. Since it's a mild form he doesn't need to have surgery but it does explain why he is having so many small events. He still has seizures but not all of his events are seizure related. The treatment unfortunately is for him to grow out of it which can take several months but we think this is good news.
Jaxson also had a heart ultrasound today because they thought they heard a murmur but it turns out he just has an extra blood vessel growing off his heart. This is also very normal and not considered a big deal he will just have to be checked again in 3 months.
What we are focusing on now is regulating his seizure meds and getting the big events where he lowers his heart rate under control, until that happens they will not start feeding him. When we do start feeding him it could take several weeks for him to learn to eat from a bottle 8 times a day. We still have quite a long road ahead of us.
Today was a better day and we are hoping for several in a row (we need them) we have had too many rough days to count lately and we need a little rest from all the drama.
Oh, and my 2lb 9oz newborn now weighs 5lbs 14oz!!! He will be 2 months old on Monday.
Thanks for every ones continued support and prayers. We feel them!
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