So, hes stats aren’t dropping as fast, they called the doctors at Alderhey for advice on his bleed. Although it was resolving, the fluid is building up in his brain, putting pressure on his brain and causing damage. After much discussion, they decided to put a needle into his ventricles to drain the fluid, I was terrified. but they did one scan before beginning and saw it had shrunk, so there was no need for the big brain needle for now. But the damage is done though, we know this and accept this. His sats are still dropping when handled too much, they often drop really, really slowly, like going 88, 87, 88, 87, 88, 87, 87, 86, 87. 86. 87. 86. 86, 86, 85 etc, etc. until they are really low after about an hour and then they use the neopuff to bring him back. And when climbing back it takes that long too. His oxygen is still near 100% on his vent, which I don’t think is necessary, even if you reduce the oxygen it makes no difference at all to his stats, same with increasing the oxygen, it does not increase his stats.
It has been really hard, they didn’t let us know just how close they came to losing him this morning until we spoke to the doctor later. We were outside and no one came out to tell us what was going on, we had no idea. The doctor in charge was actually stopped working on him, because he’d had 3 shots of adrenaline, they’d bagged him and were doing compressions, so they thought it was over. When they stopped he picked right back up. I was really angry to discover they hadn’t called us in, I would want to try kangaroo care to bring him back, or at least to hold him.
But he is doing a bit better, he is still really unstable, this infection is being kept very hush hush. No one has even mentioned it to us directly, instead I read his chart! No one has talked to us about it, no one has even tried to explain what it is, where it came from and his prognosis. What’s more, another baby on the unit is under “barrier nursing” and no one is talking about that to her mother either (I asked the mother – she had no idea her baby had an infection). The other two are not well either, and no one is telling the twins mother anything. I asked directly about the infection and it was glossed over. No one told us he was on antibiotics, we found out on rounds, no one told us his CRP was 47!!! I overheard doctors talking! This infection is pretty bad from what I’ve read and I wonder if there is an outbreak in the unit, and they are trying keep it hush for now.
Either way my dear Gideon is in a lot of trouble, he is trying so hard still. He is heavily sedated but when I fed him he tried to respond to me, tried to wriggle. I left him at 92% sats, but I am not planning any time in the future, just hour by hour. My Gideon, I love him so much.
Tiny Glimmers 