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Friday, July 25, 2008
Ben went in yesterday for his surgery and they removed all the rest of the scar tissue caused by his trach and then early this morning at the hospital Jonathan (under supervision) took his trach out and Ben has been doing great. The hole left by the trach has already begun to close up. They just cover it with gauze and tape and let it heal on its own. We are still in a little bit of shock that this actually happened this time! Life without a trach will be very different! Ben has to work harder to breath and I am sure he is sore but he is just doing so well. He doesn't know how to settle himself down to sleep- he keeps talking to himself (where before we would remove his Talking Valve at nap/bed time and he would just relax and roll over.) Obviously this is very exciting for us. The plan is to bring him home tomorrow morning if all goes well tonight. We will post some pictures soon.
Ty is continuing to do well and we have been slowly upping his feedings. So slow and steady but good. He looks great, a little stronger everyday. His cry is even getting louder and he is alert and very interested in looking around more often. We already love him so much. We cant wait to get him HOME!!!!!!!
Monday, July 21, 2008
Some Good News
Last night he had two apneic episodes (he stopped breathing and they had to use the bag to give him oxygen) due to the fact he was refluxing some of his feeding and got overwhelmed. That is not so great. We have scheduled an "upper GI study" where they will put the dye in and watch how it goes down his esophagus etc. This will help us understand what kind of feeding tube will be best for him. There are several options we are considering- NG (in his nose) G-tube (like Ben has) GJ tube(one that allows the feedings to go in his stomach or lower in his stomach/intestines.) A lot of unknowns still. But overall he is doing well and the Doctors feel he has really improved a great deal over the week.
Sunday, July 20, 2008
My Two Cents
Ty seems to have woken up a little bit - the past two days when I have been with him he has been more alert and has started to have an opinion. He doesn't cry like the other babies in the NICU - his cry is soft and he kind of sounds like a little puppy. He is so sweet. Hopefully we will find out more this week.
Friday, July 18, 2008
Our Insurance Company must hate us.
Unfortunately, as we speculated, Ty suffers from the same condition our third son Ben has, namely Hypotonia. Hypotonia is low muscle tone and it particularly affects their ability to swallow. Beth was diagnosed with extra amniotic fluid about 2 weeks before he was born and we knew this was a sign that Ty might also have the same problems as Ben. We quickly switched doctors and hospitals so that Beth would deliver at UC Davis just in case there were any issues. Ben was transported to UC Davis a few days after he was born and spent 6 weeks there. UC Davis has an excellent Neonatal Intensive Care Unit (NICU) and we were already familiar with it.
After an hour of Beth pushing, it was discovered that Ty was posterior (face up) and was not advancing down the birth canal. Beth opted to have him by C-section. Once they pulled Ty from Beth’s stomach, they took him just outside the operating room where the nurses began to clean him up. I waited to hear the loud cry which I would take as a signal that everything was okay. It never came. About an hour later, Ty was in the NICU and the doctor gave me the bad news - Ty couldn’t swallow.
Ty has been in the NICU for 5 days now and things are going pretty well. Given that two brothers have the exact same problem, they suspect that the cause is genetic. Ty is doing well, but requires frequent nasal suctioning to maintain his oxygen saturation. He has a bit of Jaundice too.
He seems quite a bit better off than Ben was and the doctors are taking it slow. They will start the genetic testing and hopefully a long overdue muscle biopsy next week from Ben will provide some new answers. For now, we just have to wait and see how he progresses.