I was feeling so optimistic yesterday morning when I arrived at the hospital and Iris had been on 1 liter of oxygen for several hours. The rest of the day went down hill from there.
She had to get back on heated high flow oxygen at 7 liters at 60% oxygen for the rest of the day. When I arrived at the hospital this morning (Thursday), she had made it down to 7 liters and 40% oxygen.
She refused to nap yesterday so I was tearing my hair out by the time Evan arrived. She has tons of energy but it lasts in short bursts. Those short bursts are just enough for her to almost jump off the bed several times and generally cause total chaos.
The days have been running together and are filled mostly with coloring, eating mac and cheese, watching Daniel Tiger, and reading books. Stickers also play a prominent role. Today, we worked on writing thank you notes to the kids who came to her birthday party. That kept her occupied for a very long time and I think we'll do it again after nap time. When she can get out of bed to play she has been super happy with a shopping cart and fake food to give to her animals.
I don't see us getting home any time too soon. She has some massively thick mucus and still needs a lot of help to clear it. We have to be off heated high flow oxygen to go home... so who knows how long that process will take.
She had to get back on heated high flow oxygen at 7 liters at 60% oxygen for the rest of the day. When I arrived at the hospital this morning (Thursday), she had made it down to 7 liters and 40% oxygen.
She refused to nap yesterday so I was tearing my hair out by the time Evan arrived. She has tons of energy but it lasts in short bursts. Those short bursts are just enough for her to almost jump off the bed several times and generally cause total chaos.
The days have been running together and are filled mostly with coloring, eating mac and cheese, watching Daniel Tiger, and reading books. Stickers also play a prominent role. Today, we worked on writing thank you notes to the kids who came to her birthday party. That kept her occupied for a very long time and I think we'll do it again after nap time. When she can get out of bed to play she has been super happy with a shopping cart and fake food to give to her animals.
I don't see us getting home any time too soon. She has some massively thick mucus and still needs a lot of help to clear it. We have to be off heated high flow oxygen to go home... so who knows how long that process will take.
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