Rowan’s health seems to still be doing great since being home. He’s been really fussy today, but I think that’s largely due to the fact that he wanted to play all night last night and didn’t sleep.
It’s strange to know that Rowan is medically better and see what his care looks like right now. Rowan came back from St. Louis on 5 more medications. Thankfully, 2 are antibiotics and will discontinue. 2 are either lifelong or completely unnecessary (tests pending to determine that) and 1 was a supplement to keep his Potassium level appropriate while he is on Lasix. I’m trying to understand why he is now getting Potassium supplements three times a day and he is getting 80% of the Lasix he was at home originally, but I’m not a doctor.
Also, Rowan’s narcotic doses were increased while he was at SLCH. This wouldn’t be that bad, but the time intervals for them are every 6 hours, which means that they are off his other medication times (every 4 hours). This has made taking care of him A LOT more work. It’s great that the oxygen is gone, but I am losing my mind trying to keep up with all 11 medications he is on right now.
Helpful – I got an IPhone from my husband and now have a med App and several note systems that allow me to keep track of this stuff better. But I certainly am sleeping far less than I did before.
AND
Evelyn has finally hit the point where it is very clear that we have completely screwed up her world. She keeps panicking when people leave saying they are “lost”. She is scared when I’m in a different room. So between Evelyn constantly trying to stay calm in her inconstant world and Rowan screaming because 3 of his medications make his stomach hurt…life is not a piece of pie right now.
I keep clinging to the fact that he should get off the sedation medication one day…and we might not have to give shots…and that he’ll learn to sleep better and we’ll get off the medications that hurt his tummy so much….
But it will be likely a month before we get to even go down on his sedation medicines again. At least a month before it gets better. A month is a long time.
I’m just trying to figure out how to make myself jump back into a positive mind set and figure out how to attack this situation with determination and optimism. It’s hard not to feel trapped.
I’d far prefer this to the alternative of not having him home, but that doesn’t mean it’s easy. So I’m giving it three days. Hopefully in three days we’ll all be better adjusted to me being home with Rowan and we’ll have figured out how to make this a routine again.
So I’m going to give myself the next 24 hours to whine to my heart’s content. Then I’ll figure out how to get back on the horse.
You're absolutely right. Even when you know you should be positive, you just have to get the whining out of your system. Honestly, do what you have to do and everything else doesn't matter. At the end of the day, you took care of the kiddos whether you complained or not. And knowing you, you've done a damn good job at it, too. You say whatever you want!
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