First of all, it does appear that Izzy is responding to the
asthma meds they put her on. Dr. Doshi was pleased with her
progress when he came to see her at 9:30 last night. However, not
two minutes after he left, things started to go downhill. She was
continuously desatting, so much so we had to go from 0.5 liters
back up 1 liter of oxygen. Once that was taken care of, she slept
long and hard, while the nurse weened the oxygen down to 0.5 liter.
She woke up and ate well, but when she moved, she desatted, so up
to 1 liter she went again. She took a nap, then Daddy came. We
played, had fun, ate some more, had a chest x-ray to see why she
was seemingly going backward, and then Izzy went to take a nap
again. She wasn't asleep yet, but kept desatting, so we had to go
up to 1.5 liters. On 1.5 liters, not moving, but not asleep she
hovered around 90% oxygen saturation. The x-ray came back with a
dark spot on the left lung behind Izzy's heart. It could be
atelectisis from the heart (which is unlikely) or it could be
pneumonia. They started her back on antibiotics, which they had
stopped Tuesday, and just took a blood gas. We are hoping the blood
gas comes back fine, but you never know. Once again, nobody has any
answers and nobody seems to know why Izzy is desatting and nobody
knows how to fix it other than upping the O2.
Dale and I are very lost at this time. Dale is angry, but doesn't have anyone or anything to be angry at, which makes it hard. It is so much easier when anger can be directed someplace, so it can be released, making it easier to move on. I don't know how to say what I am feeling. I guess I'm angry too. I'm frustrated that no answers can be found. I'm sad that my baby wants to go places and see things and she is tethered to the wall. I feel like Phinney is getting short changed. Today he is with Papa, which he loves, but he just wants all of us together. Most of all, I'm sad that once again we've been stuck in a hospital for a week, we will be here for who knows how much longer, and instead of living life, we are just treading water. How I just wish I could take her place! Make me lie in a hospital bed and let her crawl around, grab furniture, and try to stand. Let her smell flowers, pet kitty cats, and learn why this world is so wonderful, I'll be poked and prodded. I already know the joy and wonder of fireflies and the smell of fresh cut grass. This was her chance to learn those things for herself. Now it will be pushed out further and further.
I know you all will because you provide us such support, but please continue to keep McKenzie Rose in your hearts. Hopefully all of the positive vibes sent her way will provide us with real answers and a way home, so that she can see summer for herself.
Mel
Dale and I are very lost at this time. Dale is angry, but doesn't have anyone or anything to be angry at, which makes it hard. It is so much easier when anger can be directed someplace, so it can be released, making it easier to move on. I don't know how to say what I am feeling. I guess I'm angry too. I'm frustrated that no answers can be found. I'm sad that my baby wants to go places and see things and she is tethered to the wall. I feel like Phinney is getting short changed. Today he is with Papa, which he loves, but he just wants all of us together. Most of all, I'm sad that once again we've been stuck in a hospital for a week, we will be here for who knows how much longer, and instead of living life, we are just treading water. How I just wish I could take her place! Make me lie in a hospital bed and let her crawl around, grab furniture, and try to stand. Let her smell flowers, pet kitty cats, and learn why this world is so wonderful, I'll be poked and prodded. I already know the joy and wonder of fireflies and the smell of fresh cut grass. This was her chance to learn those things for herself. Now it will be pushed out further and further.
I know you all will because you provide us such support, but please continue to keep McKenzie Rose in your hearts. Hopefully all of the positive vibes sent her way will provide us with real answers and a way home, so that she can see summer for herself.
Mel
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