Day 37, 38 & 39

JETT

Today Jett has been good, his ventilation rate has been weaned from 45 to 40 and his oxygen has been weaned down to 30%. It has been anywhere from 30 - 40% the last few days. He has had a few issues with cannula's tissuing so has had to have a couple of resites.. Not very nice. He now has a cannula in his ankle :( He hates it..

He had a weigh the other night and weighs 1560gms. He still has a bit of fluid though, so they are going off his previous weight.. He had an albumin transfusion yesterday, his level was at 19 and Dr D wants him tranfused if he goes under 20..

As far as his gut is concerned, not much change, Dr D is still concerned about some bowel inflammation so still doesn't want to do the contrast, he is being assessed on a daily basis, but Dr D will be back on tomorrow so we will see what happens.. Soon they may have to just do it, I'm not sure how long they can leave it. He can't even get off the ventilation til after the surgery, so in a way, I just wish it would happen so we can start moving forward again. Having said that I don't want to rush him. I trust that Dr D is definitely doing what's best for Jett :) The surgeons come on a daily basis aswell. Day 37, they put a cotton bud up his bum to try and stimulate him to poo. It was awful, Jett was crying so much and his little face went purple. It distressed me too. I hate seeing my babe that upset. It didn't work anyway, still no poo.

I haven't had a cuddle for 3 days, yesterday i felt he was too unstable and today I wasn't allowed because they changed his ventilation rate and wasn't sure how he'd cope with it, so it was best to let him rest. It's really hard though. I just wish I could be a normal Mum.. I'm hoping I get a cuddle tomorrow, since he has been pretty good today :)

MUMMY

I can't believe I have been living this life for 5wks. I have been living at Ronald Mac house, spending my days in the hospital and expressing 8 times a day for 5 weeks!!! I am hoping only another 10wks to go then we can come home..

As Jett gets bigger and stronger, it's actually becoming harder for me. I watch how much he fights and know how angry and uncomfortable he must be. It's great he's getting stronger, it's great he fights but my god it's hard to watch him fight his tube and knock hands away when the nurses or dr are doing something.. He had his tube and NG tube changed today, he hates it and they have to hold his arms and legs down because of how much he fights. It's awful to watch, but I always make sure I'm there, even if it's just talking to him. Today though a nurse let me touch him and hold his hand while they were doing it. Most nurses don't. It's funny how just holding my son's hand can calm us both. He actually handles it quite well. He was only put up to 40% oxygen. Although they did increase his rate back up to 45 just for that, because it is so traumatic. His little face gets red from them pulling the tape off. Makes me so sad to see him like this. I just want to protect him and I can't :( I can't wait til I have him home. I am so proud of my lil Jett Plane he is so brave :)