Well I have to say having a chance to actually write things down has become quite a feat. We have now been home for almost seven weeks now! I have tried countless times to write about all the things that have happened since I last wrote and I can give a brief summary from what this tired mom can remember.
So a week prior to us FINALLY coming home we were transfered out of the nicu. Now we were going to be able to leave to the floor on tuesday but faith as always had another idea for that. That night her blood pressure dropped and as they were doing her rounds she woke up and spit up so I went to change her. And I can't believe what I saw. She had raised hive type spots all over her abdomine. It quickly spread all over her body and all you could see is red. At this point in time dan was home with the kids since my mom went in for surgery and so we had no one to get them to from school and all their appts. I called the nurse in hoping she had some answer for me and that is when the chaos began. Blood draws, eco test on her heart, ultrasound, xrays, and specialist visits. All the while I sat there watching her scream with no answer to it. By the end of the day the only answer I had was she was severely dehydrated and her blood volume was low in her heart which was making her levels drop. The rash was and still is unknown. That day she got to shots of saline water and by the next morning my happy baby was back. What they didn't tell me and I heard in rounds is that her heart was beginning to thicken. Basically because her lungs being so small it was making her heart work harder to oxygenate her body. So with any muscle working harder it gets bigger. Now its not to big of a deal if it doesn't continue but it is another thing we will have to monitor and keep an eye on.
Friday came and with that our move out of the nicu. I purposely didn't say anything to anyone, especially faith since I now knew she had her own agenda. Luckily dan was there for that since it was quite a shock. The room was such an upgrade with a tv, couch, and our own bathroom BUT the down fall was the lack of nursing. The main reason for going there first was to get used to doing it all on our own, and did we ever.
The thought was and was told that we would only be on the floor for a few days but that of course changed. I was put through the ringer of training and no sleep. See when she is on dialysis at night with her drip feeds was the only time she the up, but along with that if she threw up once her chance of coughing and throwing up was even higher. So I spent my nights in her room since the nurse would not hear her and the doctors were keeping us there for every little thing.
So I fought my butt off for nights on end with no sleep to show then what I am willing to do to get home, but it didn't work. That is when I broke down and got lost in all of it. All of the discharge planning, the equipment, the responsibilities, the what ifs. That its when I doubted myself and who I was as a mom...and too say the least it didn't last long.
For three days straight I lived in her room. One day I didn't even go to the bathroom our eat for 7 hours. Just to cram in all the info they should and could have done for 3 months. That is what they were going to keep me there for another week to do! Deaming me again of being incapable of taking care of her, even though I had been for months. It was like I was being bullied by the doctors. Dan wanted to pick us up wednesday, well wednesday came and went then they said maybe friday. When that changed and they said they wanted to wait till the following wednesday dan lost it and came to fight the battle I had been in for a week now. They also wanted to up her fill volume and up her hours and dextrose solution. All of which I questioned and didn't want happening, but again I wasn't being heard. But they heard Dan that's for sure! So sunday with chaos of packing three months worth of clothes, supplies, and a baby we were on our way home. Three months and four days later.
No comments:
Post a Comment