Where to begin. Today is day 14 of this hospital stay. I'm not
quite as exhausted as I expected and McKenzie is further along than
I originally expected, but not doing as well as the doctors
intially expected. I guess it is a good thing that I didn't put
much stock into those words. I was hoping she would at least be out
of the PICU by now, but at least I always know there are nurses
nearby to help, which is not as easily said from our experiences
with 4SW (cardiac floor, two doors down from us and across the
hall). Don't get me wrong, 4SW is good, but more patients per nurse
than the PICU.
McKenzie is sleeping right now without any hook-ups. No sedatives, no oxygen, no IV, no tubes (only monitor wires). Her sats are around 90 as she sleeps, which is low for her heart, but good for where her lungs are currently. There has not been much change since yesterday, despite the more aggressive treatments. Her sats should be upper 90s once her lungs clear up. She won't be completely normal since she still has a partially open PFO (part of the fetal circulatory system that allows blood flow between the left and right atrium and usually closes within a month after birth, McKenzie's didn't and they couldn't fix it).
I wish I could say the relief she felt yesterday was long-term. It was not. We now believe the intial diagnosis that the high flow oxygen caused her discomfort is wrong. As soon as she eats, she blows up like a balloon and begins to moan and cry. We thought they were possibly giving her the wrong formula, even though I checked immediately at the first sign of problems, so I brought in our can, so I can be certain. She still blew up after 5 ozs of "our" formula, but recovered more quickly. It is possible the formula helped or that the earlier fix left her more room. I just spoke to the docs about it again and their top priority is to figure out what is going on and to clear out her lungs.
They also have to get her peeing on her own. The only time to she pees is right after a dose of lasix. She is crazy swollen. She is more swollen now (at least in her face) than she was the couple of days following her surgery. Her eyes are almost lost. I have to think that may be part of the overall problem.
To top it all off, Izzy cut her first tooth. I'm sure that doesn't help her comfort level. Losing her IV yesterday did though. She was able to sleep on her side because the IV was gone. She felt her movement constricted by the IV and without it, free to get comfy cozy.
I just want my baby back. I saw the slightest smile yesterday, but Dale did not see any in the 24 hours he was here. The little girl that would light up the room whenever she entered is not here any more. She doesn't really want to play. She doesn't get excited for anything. She doesn't look like my baby. I think she has cried/moaned more in the 8 days she has been extubated than she has in her entire life put together. I know when she gets home she will start to come back more, but she has to get well enough to get home. My goal now is to get her home before May 8. That is the day she was released last year. It is beginning to feel that way again. The beginning of this stay was not as rocky, but finding the point that McKenzie can sustain herself on her own was very difficult. At least she is off the high flow oxygen. Last year at this time, she was still on it and nitrogen.
Mel
McKenzie is sleeping right now without any hook-ups. No sedatives, no oxygen, no IV, no tubes (only monitor wires). Her sats are around 90 as she sleeps, which is low for her heart, but good for where her lungs are currently. There has not been much change since yesterday, despite the more aggressive treatments. Her sats should be upper 90s once her lungs clear up. She won't be completely normal since she still has a partially open PFO (part of the fetal circulatory system that allows blood flow between the left and right atrium and usually closes within a month after birth, McKenzie's didn't and they couldn't fix it).
I wish I could say the relief she felt yesterday was long-term. It was not. We now believe the intial diagnosis that the high flow oxygen caused her discomfort is wrong. As soon as she eats, she blows up like a balloon and begins to moan and cry. We thought they were possibly giving her the wrong formula, even though I checked immediately at the first sign of problems, so I brought in our can, so I can be certain. She still blew up after 5 ozs of "our" formula, but recovered more quickly. It is possible the formula helped or that the earlier fix left her more room. I just spoke to the docs about it again and their top priority is to figure out what is going on and to clear out her lungs.
They also have to get her peeing on her own. The only time to she pees is right after a dose of lasix. She is crazy swollen. She is more swollen now (at least in her face) than she was the couple of days following her surgery. Her eyes are almost lost. I have to think that may be part of the overall problem.
To top it all off, Izzy cut her first tooth. I'm sure that doesn't help her comfort level. Losing her IV yesterday did though. She was able to sleep on her side because the IV was gone. She felt her movement constricted by the IV and without it, free to get comfy cozy.
I just want my baby back. I saw the slightest smile yesterday, but Dale did not see any in the 24 hours he was here. The little girl that would light up the room whenever she entered is not here any more. She doesn't really want to play. She doesn't get excited for anything. She doesn't look like my baby. I think she has cried/moaned more in the 8 days she has been extubated than she has in her entire life put together. I know when she gets home she will start to come back more, but she has to get well enough to get home. My goal now is to get her home before May 8. That is the day she was released last year. It is beginning to feel that way again. The beginning of this stay was not as rocky, but finding the point that McKenzie can sustain herself on her own was very difficult. At least she is off the high flow oxygen. Last year at this time, she was still on it and nitrogen.
Mel
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