Day 75 & 76

Jett

Monday, Day 75

Jett had a full blood count and cap gas. CO2 is at 85, which is not great, platelets are at 104 which is good. Probably the best they've ever been.

Jett is still having brady's with suctions, lung secretions are still quite thick. He's spending a lot of time coughing and gagging on the ventilation tube. I was supposed to have a cuddle in the afternoon, but he had a major brady and had to be bagged for the 3rd day in a row.. I was in the expressing room when I heard the emergency bell go, not realising til after it was for my son :(..

The drain in his small intestine has started to drain something :) Finally it's doing what it's supposed to be doing. I am hoping this is a good sign as it could possibly mean there is some form of communication somewhere along the line. Unfortunately we wont find out til next month..

Tuesday, Day 76

Dr D is back today YAY!!! (She is never allowed to go away again!)

This morning I was woken at 5am. It was Jett's nurse ringing. My darling had another big brady requiring bagging. He certainly knows how to get attention that boy!! So yeah, not a great start to the day..

All these episodes and watching him gag on the tube etc was making me think maybe he'd had enough.. Maybe he was saying he didn't want the tube anymore. I wasn't sure what our options would be. I spoke to Dr D about my concerns and she feels that although he is needing to be bagged it shouldn't be too detrimental to his health. (I was worried about lack of oxygen causing brain damage). She agrees that Jett has had enough of the tube. Often bigger babies do this thing called splinting. It's basically where they tense their chest and fight the ventilator. It stops the gas exchange from happening which causes de sats and bradys.There's not much they can do about it, Dr D said if it got really bad they could give him more sedation but they don't want him so relaxed he doesn't breath at all by himself. Unfortunately his CO2 is still high so he can't be extubated yet. She doesn't think he's ready. Dr D doesn't want to give him steroids to get off the vent because when he has surgery he will have to be ventilated again, so there's not much point. Jett had an xray this morning which showed the tube may not be down far enough because he's getting so big so the nurses re taped his tube and put it down further. Dr D wants to re tube him with a bigger tube in the next week or so. She definitely doesn't think he is at a point where he is struggling so much he wont make it to surgery.

He is growing e coli in his tube, but Dr D is not giving him AB's yet because he has been on them for so long and she thinks his body needs a break. She said if his lung secretions get worse or he shows signs of infection she may consider starting them. E coli is easily treated with a course of AB's.

I also discussed my concerns about the TPN affecting his liver. Dr D assured me this is very normal and the liver regenerates very quickly once TPN is stopped. Providing his surgery goes well and he can start feeding, his liver should have normal function not long after the TPN is stopped. They are hopefully looking at doing a contrast in the new year then surgery is still set for late January. No official date yet though.. I asked if Jett's little lungs would cope being ventilated for another month and she seems to think with the new bigger tube he'll be ok. Although he still has Chronic Lung Disease it isn't bad enough that he can't come back from it.. I think surgery is Jett's biggest hill to climb at the moment. I really hope they can do something. My son can't go through all this to not make it out of here...

Jett's lasix infusion may be stopped or reduced in the next few days. Dr D is just going to watch him and see what she thinks. On Monday Jett will be having another echo to check the duct in his heart.. They can still hear it's there but hopefully as he's grown the duct has become less significant..

I think thats about it.. I am getting a cuddle today at 3pm :) Can't wait!!

MUMMY

Well, I have been going through a lot of emotional turmoil. Watching my son struggle and reject the ventilation is really fucking hard. It made me question if I was doing the right thing. I don't want to keep pushing Jett if he's tired. Speaking to Dr D this morning though gave me back the hope I started losing. As explained above, the bradys and de sats are caused by the splinting and also from the lung secretions. If Jett didn't need surgery, I have no doubt he would have been extubated by now. There's still fight in my son. He's come this far. I wont give up on him. I just want what's best for him and sometimes I really feel like I don't know. All I can do is go with my instincts and be guided by the medical team. I'm glad Dr D is such an awesome Dr and I trust her. I trust that if she thinks it's becoming too much for him, she'll let me know. For now though, Jett and I push on another day. In a way I just wish January would hurry up. In another way, I terrified. For now though I have to try and treasure each day and take it as it comes. It's hard though to not get ahead of myself. I want to plan for the future.. I can't though, not yet. I just need to keep up my hope and trust that my son will make it home with his Mama..

I also want to add that the nurses have been amazing. They really take the time to look after me as well as Jett, I'm so grateful for the wonderful nurses out there.