Day 3 - Saturday. We expected to be really just treading water, waiting for Aidan's hMPV to improve and very anxiously awaiting surgery on Monday. Overnight was a little bit crappy since Aidan needed his IV checked every single hour. But so far, we're really successful on the Pedialyte feeds. Aidan's perked up a lot since he's started keeping down the Pedialyte. Which means he's less willing to let the doctors and nurses do their jobs. But also it means that we're able to take him off the IV fluids. He's finally making very wet diapers - actually, he soaked through his diaper and sheets overnight. I'm just happy to see him so hydrated!
In Hospital-Speak, I find Rounds pretty fascinating. A huge collection of doctors, nurses, and whoever else seems to be milling about goes from doorway to doorway talking about children but never actually seeing, touching, or talking to them or their families. Today, I decided to join in when Rounds made it to our room. I guess I'm glad I did - here's what I found out:
- We are cancelling Monday's surgery. They feel that the scopes are elective and he's too sick for it to be safe. When I asked how long it would be before he's safe to be put under anesthesia, the doctor said that they liked to wait "at least a week or two." So no answers for a few more weeks on whether what we're feeding him is even safe for him.
- We may not be having the G to GJ conversion on Monday either. Interventional Radiology can do the procedure without sedation, but only if the patient is "very cooperative." Which this patient isn't.
So now The Plan is out the window and I'm frustrated and I feel helpless. I don't know what we're going to do. I don't know how long we'll be here. Maybe they'll send us home tomorrow. Maybe they'll keep us longer and actually try to help us. I really don't know. I am angry that Aidan picked up this virus because now the doctors feel justified saying that everything is the virus's fault.
Our nurse, Alex, let me have him weighed on the baby scale instead of the standing scale. 11.115kg. Almost 24.5 pounds. So I'm not as alarmed, although he certainly has lost weight - I just think the standing scale wasn't very accurate for him. He's just not good about standing still on it yet.
Today's Feeds:
9am - Pedialyte - He did fantastic!
noon - 1/4 concentration Elecare (52.5 calories) - This one went well too. He mostly slept through it.
4pm - 1/4 concentration Elecare (52.5 calories) - No vomiting, but his cheeks did start to redden during the feed.
7:15pm - 1/2 concentration Elecare (300 calories) - This was set to run from over like 10 hours, so we'll see, but it's been going for several hours and so far so good.
I guess my fear is that he will do okay with his feeds for a little bit and we'll go home, but then he'll go right back to where he was and we'll be no closer to answers. We've definitely had days where he tolerates daytime boluses and even the first few hours of night feeds, but by the middle of the night, everything's gone to hell and back again. I want him to be better - not just "good enough to send home."
Tomorrow I guess we'll continue half strength Elecare and hopefully confirm the Tube Change. Tomorrow is Easter, so I'll definitely take pictures of what The Bunny has left.
In Hospital-Speak, I find Rounds pretty fascinating. A huge collection of doctors, nurses, and whoever else seems to be milling about goes from doorway to doorway talking about children but never actually seeing, touching, or talking to them or their families. Today, I decided to join in when Rounds made it to our room. I guess I'm glad I did - here's what I found out:
- We are cancelling Monday's surgery. They feel that the scopes are elective and he's too sick for it to be safe. When I asked how long it would be before he's safe to be put under anesthesia, the doctor said that they liked to wait "at least a week or two." So no answers for a few more weeks on whether what we're feeding him is even safe for him.
- We may not be having the G to GJ conversion on Monday either. Interventional Radiology can do the procedure without sedation, but only if the patient is "very cooperative." Which this patient isn't.
So now The Plan is out the window and I'm frustrated and I feel helpless. I don't know what we're going to do. I don't know how long we'll be here. Maybe they'll send us home tomorrow. Maybe they'll keep us longer and actually try to help us. I really don't know. I am angry that Aidan picked up this virus because now the doctors feel justified saying that everything is the virus's fault.
Our nurse, Alex, let me have him weighed on the baby scale instead of the standing scale. 11.115kg. Almost 24.5 pounds. So I'm not as alarmed, although he certainly has lost weight - I just think the standing scale wasn't very accurate for him. He's just not good about standing still on it yet.
Today's Feeds:
9am - Pedialyte - He did fantastic!
noon - 1/4 concentration Elecare (52.5 calories) - This one went well too. He mostly slept through it.
4pm - 1/4 concentration Elecare (52.5 calories) - No vomiting, but his cheeks did start to redden during the feed.
7:15pm - 1/2 concentration Elecare (300 calories) - This was set to run from over like 10 hours, so we'll see, but it's been going for several hours and so far so good.
I guess my fear is that he will do okay with his feeds for a little bit and we'll go home, but then he'll go right back to where he was and we'll be no closer to answers. We've definitely had days where he tolerates daytime boluses and even the first few hours of night feeds, but by the middle of the night, everything's gone to hell and back again. I want him to be better - not just "good enough to send home."
Tomorrow I guess we'll continue half strength Elecare and hopefully confirm the Tube Change. Tomorrow is Easter, so I'll definitely take pictures of what The Bunny has left.
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