- 01
- Sep
It would appear that the donperidon is starting to do some good. Up until about half seven tonight Daniel had not been sick. However, he did have a massive de-sat (oxygen levels dropped) down to 17% earlier on today but it didn’t affect his heart rate so it wasn’t as major. Fortunately, it seems whenever he has a de-sat or apnia it is always for a reason such as the CPAP not working or the CPAP dumping water down his nose. So while it is really upsetting having him de-sat or stop breathing we are reassured by the fact that he does what he does for a reason.
The hope now is that the donperidon continues to work well and that maybe, just maybe his feeding will improve so that we can start to move forward. Emotionally this situation is so draining that it has gone far beyond anything that I had expected, it’s also really lonely for both of us. For Julie it is the isolation from all that you have know and built up around you, your family, friends, Tomas evan OJ (our cat). Now the staff on the neonatal unit have become her surrogate family, they are her friends. For me it is a more classic soletude, I go to work in the day and interract with peers, then collect Tomas and go to the hospital for a couple hourse, then back home and once he’s in bed it’s back to soletary. When you are single the soletude is a part of the lifestyle but when your in a relationship it’s hard to accept that you are living two separate lives that touch briefly each day.
The only consolation that we get is that every saturday I get to spend the night and some or all of sunday at the hospital which means I get time with Danny and with Jules too; which gives her a break from having to deal with it all on her own.
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