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April 25th, 2009, 10:26 AM
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iamkc iamkc is offline
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Location: Montana
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After all of this with Milo's breathing and the changes, I had to turn Milo's oxygen up to 2 liters on Wednesday night. That's as high as the compressor goes, and it still wasn't working. Again, I cleaned everything, changed the probe, everything. His sats just kept dropping. I had the same problem of not being able to wake him up. Honestly, I didn't bother the doc because I knew that we'd just be told to wait until Monday's sleep study, that there really wasn't anything to do. Thursday, when he finally woke up, Milo seemed fine, just sleepy, as he has been. Mid-morning, he started holding his head and screaming...and screaming...and looking like he was falling asleep, but he never made it. I couldn't get him to stop screaming, couldn't distract him, and I made sure to give him extra fluids because I knew that he would be dehydrating with the breathing, sweating more, and screaming. I kept taking his temp, assuming that it may be an ear infection (I had a call in to his ped, but they never called back), but he was holding his whole head, pushing on his face, etc. I started to get worried about intracranial pressure, which they told us was a problem for a lot of kids on growth hormone. Took his temp at 530, 96.8, which is pretty normal for him. His pulse and o2 were all over the place, so I turned off the monitor and called the ped again. (I hate going to the ER if we don't have to because he picks up everything and ends up in the hospital with a worse version of it.) At 615, I took his temp again because his hand seemed warm. In less than an hour, his temp went from 96.8 to 101.3! The nurse on call called back. She happened to be a pulmo nurse, and was on the way to the beach with other pulmo nurses. They agreed-because of everything going on, I needed to go to the ER. As I was getting Milo ready in different light, I realized that I hadn't been crazy-his lips and nose were blue, he was more pale, and his eyes were VERY red! Luckily, we're not too far from the ER.

Because Milo is so small, they still treat him how they'd treat a newborn-he goes right back. He still had a temp, and his o2 was at 97. (Not surprising-it goes up and down when he's awake.) When they hooked him up to the monitor, his pulse was 190! When he's pitching the biggest fit at home, it's only about 150! Sleeping, 90-110, awake, 100-120. Playing, 130, maybe. He got meds, fell asleep, and it was still 180!!! One of the residents we've had before thought it could be dehydration. He thought this, though, because when Milo was in Special Care in January, this doc got an earful because he let Milo get severely dehydrated because he didn't listen to me about Milo's signs, which aren't typical. So, he was pushing the dehydration thing. They diagnosed a double ear infection, but couldn't explain the pulse, hypoxia, cyanosis, and a few other things. Before he got the Pedialyte drip, his numbers came down, and he'd already been asleep for a couple of hours. It was NOT dehydration-NOTHING indicated it. It wasn't just his stress...they gave him a couple of things to sedate a little, and his pulse and BP were still high, much higher than pain should make them.

At 330, they finally sent us home. He was stable, but we had no explanations. This morning, while he was still on drip feed, had been asleep for a while, his o2 ok on 2L, Tylenol in him, etc...his pulse was 160. We're so worried because it's so random. He's been back to his heavy, hard, rapid breathing today, too. But he seems to feel better! It's confusing. We think that all of his symptoms are from separate problems, but no one can figure out the pulse problem, since it happens when he's completely at rest and everything is about perfect for him.

Anyway, I got to sleep (dozing) at 615...and DH's alarm went off at 620. Kannon got up at 630. I also have a chronic issue (one of many!) with open ulcers in my bladder (TMI? Sorry.). It's the rare form of the disorder-the ulcers are large and open, not small and pin-point. I'd rather be in labor for the rest of my life than have this or my period. They're working together to bring me down! I got to sleep at 330 this morning, finally, and the monitor beeped all night. Kannon and Milo both woke up at 7. I feel like telling DH that I'm going grocery shopping, then sleeping in the car in a parking lot somewhere!

Oops...sorry so long again. Really.
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