That is how long Ethan was at Nationwide Children's Hospital this last month. He was finally discharged on Saturday, December 29th. It wasn't easy by any means. Thankfully my nursing experience has been in my favor lately. Once he was stable for a few consecutive days we felt comfortable enough to bring him on home while we wait for the anticipated surgeries.
In the meantime, Ethan was sent home on oxygen, portable suctioning (he is unable to cough up his phlegm so he chokes, but once we suction him he clears up just fine!), continuous pulse ox (so we can watch his oxygen levels. He will drop very low if his oxygen comes off while he is sleeping. The pulse ox is a real pain, there is no way to adjust the "emergency alarm" and holy CRAP it's loud. I'm pretty sure I've almost ended up in the ER a couple times at night when that thing goes off), nebulizer (breathing treatment machine) and his tube feeding supplies. Thankfully his oxygen levels are not dropping at all like they were. We were unable to change his diaper without his oxygen levels dropping into the 50's. Ethan's baseline oxygen levels are in the mid 80's to low 90's. his breathing was so fast, at times bresthing 80+ times a minute. he was having retractions everywhere on his chest, he was using every muscle in his body to breathe. He would turn blue and purple. I hope to NEVER see him look like that again!!! He had completely stopped eating while he was sick. He could barely breathe. So to suck, swallow, and breathe was nearly impossible for him. When he started to feel better he had major coordination issues to suck and swallow. I had to retrain him to learn to eat again. FINALLY, he ate 45ml (an ounce and a half) for me. He has been eating 10ml-45ml since then. I'm just so thankful he did not develop a food aversion. I fed him every single day in the hospital. I never gave up on him. Most times he would take maybe 5ml and I was ecstatic!!
His cold seems like it is gone, but we are still having rough mornings. Since he has been sick, the 8-10am time required lots of TLC! These episodes are nothing like they were. Today has been the first day we have tried going without a breathing treatment and succeeded!
So, after much consideration and pondering, we decided it would be in Ethan's best interest to have a gtube place (feeding tube directly to his stomach). He has had the NG tube in his nose for over 2 months and there is no indication he is going to be able to eat 90ml every 3 hours around the clock. He is allergic to adhesive and his poor little face is a mess! I absolutely hate to change or replace the NG when he pulls it out. We have to cover his hand with mittens or socks at night. I feel like this is hindering his developmental progress. So yes, I'm at a point where I WANT the gtube.
While we were at the hospital they began working him up for the gtube. They did an upper GI xray with barium. The radiologist doing the xray, says "HHHMMMMMM" I was then like, look I'm a nurse and I was to know what you see. He stopped and said your son has "Intestinal Malrotation, it's not causing any problems right now but he needs to see a general surgeon today." WWWHHHAAATTTT!!!!!???? So, I know nothing about peds trying to figure this out in my head as we walk back to the room. The surgeon actually met us as we were going into his room. Basically this is a congenital issue he was born with, developed when his intestines were formed. It's common with babies that have congenital heart defects. He explained the intestines are not where they should be, they're just laying in his abdomen, therefore they have a huge risk for twisting and cutting off blood supply, thus he would loose that part of the intestine and could be fatal if not treated promptly. BUT everything looked fine and he is in no immediate danger. Pretty scary if you ask me!
He needs to have the AVSD repaired first (more than likely) We are now looking at having the gtube and intestinal surgery done at the same time after he recovers from the heart surgery.
We will find out more information on a plan at our cardiology visit on Monday. As of right now there is not a tentative dates for surgery.... I'm thinking we should have a date for the end of the month. AS LONG AS HE DOES NOT CATCH ANOTHER VIRUS!
Just sharing a few pictures since we have been home!! So good to be home :)