Oh my what a long night! I really don't know how I did this for 3 weeks when he had RSV last time. The difference as far as my care is concerned this time is he is off dairy and has been pretty much for a couple months while off and on sick. I made a bunch of green drink and brought it with so he's been gobbling up that. And this time I brought fresh fruits and vegetables instead of just relying on hospital food. I'm hoping it helps. I can't believe I was giving him formula last time when he was so congested (as my milk had just finished at that time). Live and learn I guess.
So last night between breathing treatments every 2 hours, vitals every 4 hours and the beeping alarm of his heart rate dropping in the high 30's and low 40's, didn't get much sleep at all. The heart rate thing freaks me, and all the nurses, out every time. But cardiology doesn't seem to be concerned. I guess because it's become his baseline while on steroids. This time they had him on something different than Prednisolone/Prednisone. I can't recall the name but it's more of an emergency version that is only given one or two days. He just had it one day and that night his heart rate dropped. He didn't have it last night but his rate was off as well. So it must be much stronger than the other. Usually it'll take him a few days of being on the other for his heart rate to drop. This happened immediately. I called the cardiologist yesterday and she spoke to the nurse and doc on. Said it was fine that it is his "baseline" when he's on steroids. Wanted to be alerted if he dropped below 40 which he did quite a few times. The night nurse was nice enough to lower the parameters to 40 instead of 55 which helped. But it made it even more alarming when it did go off because then I knew it was way too low.
Regarding the feeding issue. Nothing like adding more stress to an already stressful situation. According to the doc on his lung x-ray looked more like pneumonia from aspiration rather than just a cold. Can't recall if I addressed that in the last post or not. Anyway, they ordered a feeding eval. Which happened this morning. I was so nervous feeding him just hoping he didn't cough while eating or drinking. I couldn't imagine if they would take him off of food or drink. And he did great eating. But when he took a sip of water he coughed after. But he hadn't coughed for a while so we kept going. When he took his other sips, he was fine. But he's only doing single sips which we aren't sure why. I can only assume that it's because he's still congested and doesn't want to hold his breath that long to drink.
He's getting IV fluids because he's not been drinking enough but now I'm afraid he's getting too much. They are evaluating his ins and outs now.
There's an echo planned for today to check his pulmonary status. They just want to make sure his pulmonary hypertension hasn't escalated. It's been good for a while now. We weaned off of Sildenefil last year, if I remember correctly at the beginning of the year.
So the last items of concern are his saturation and his labored breathing. The breathing has gotten much better. He's still got the cough but not quite as often. As far as his sats go, they've weaned him down to 1 liter but he's sitting at 95% which doesn't make sense. When we arrived his sats were actually fine but I had him on 2 liters because of his stress working so hard to breathe. And now he's consistently lower than he should be. Has to still be issues with his lungs for now. We will watch him and see.
If the sats get better we can possibly go home. I'm hoping in the next day or two. Unless something turns for the worse. We also need to have the echo and have it evaluated.
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