I have written this post 3 times. I keep deleting. I am trying to find the simplest way to update all of you----
Basically, on Friday after a long day of misery for Cohen because of an impatient and frustrated nurse, I was over the edge. (It took all day to get his NJ tube back in place. He had 5 x-rays in 2 hours!)We made the decision to be transported back to Baptist as soon as the swallow study was repeated this week. We have been here for 2 weeks, and there is no more concrete information than when we got here. I do really like the doctors here and I know they have done every test they have available and tried hard to help Cohen.
But let's face it, they are with him 30 minutes a day. He is with his nurse the other 23 hours and 30 minutes. We have had a couple of great nurses, but no where close to the consistency and knowledge of the Baptist nurses. I called Baptist early Saturday morning to let them know we were ready to be back .
Cue to Saturday......I made sure I was here at 7:30 to attend early rounds. I wanted to tell the Vandy doctor team myself that we would be requesting the transfer. I had no idea they would give me the "final recommendation" from the team. Justin would have come with me if we had know this was going to happen.
I probably should have expected this, being that his due date is looming over us in 3 days.
So, the consensus from them is he should have a nissen/fundiplication "G" tube surgery. They think this will help let his throat heal and develop without the strain of the NJ tube in place. The "guess" is he would have this a year. He would come back monthly for swallow studies to help determine when we could try to bottle feed him again. Until then, he would be fed 100% through the tube, directly into his stomach.
At first they were going to cancel the repeat swallow study, but as of this morning, they are going to go ahead and do it.....My opinion is we should do everything that we can reasonably do before a surgery. I will not let them cut on my almost 7 lb baby until I know it's the only option.
Let me say all that to say this: If the surgeon could guarantee me this surgery would "fix" him, I would schedule it tomorrow. However, that is not what you get------this is just going to be a temporary solution to a swallowing problem he will outgrow. The question is when will he outgrow it?
I know this is alot of information and pretty complicated! If the swallow study this week shows no progress, we will probably go ahead with the surgery and bring him home within a month. If the study shows any progress, we will likely go back to Baptist and wait 2-4 more weeks and repeat it again.
This is where we are today. I hope and pray he can overcome this without a surgery, but Justin and I are trying to be realistic. He may need a surgery. Please pray for Cohen and Justin and I as we try to muddle through the information and make an informed, correct decision.
Ohhhh.....I almost forgot to mention they took him off the vapotherm yesterday to try the regular nasal cannual again. So far, he is doing GREAT on 1 liter at 40% oxygen. Hopefully this time he will stay off the vapotherm for good!
Thanks for reading! I will update you tomorrow!