Written on Sunday AM:
We're now 9 days outside the hospital. The start was sort of rough. Liam swung sharply between feeling lousy and better. But since then things seems to stabilize a bit. The situation is still extremely complex and most likely to stay that way. But within the big, chaotic, confusing picture, it seems that we found a little piece of peacefulness. Not without pain; not without vomiting; not without OOOOWWWWies. But right next to them also periods of feeling good, of smiling. It's written based on the experience of only a few days, so take every word with a serious grain of salt.
Most importantly: When there were problems, we (we as in "Rachel") were able to control them.
Two days ago Liam didn't feel great, to put it mildly. She vomited and complained about not feeling well. Since nothing we tried worked and there was nothing to lose, we put her in her wheelchair and went outside. the minute she felt the hot air she started smiling. The vomiting stopped at once. And she remained comfortable for the rest of the night. But sometimes as soon as she gets outside she immediately ask to return to her bed. And usually at this times it means she would need some kind of pain control medication.
So all in all we experienced a pretty nice weekend so far - with rest, and bike, and friends, and beer. Nothing special, right? Just an ordinary weekend. But we didn't experience such weekend in a llllloooooonnnnnggggg time.
But then came Sunday afternoon:
Liam started not feeling well around 4-5 PM. Go outside Liam? Yes. But she asked to return to her bad immediately. From there things deteriorated rapidly. Within a very short time Liam was screaming out of pain. And just like that the wonderful weekend went down the drain. All the stress returned at one.
By that time we already arranged for dinner. Now, meal time is a sort of down time, pleasure, if you will. But how can you enjoy it (or eat at all, for that matter) when she's screaming right next to you? So we kicked everybody outside to the porch, with one volunteer staying with Liam. Sitting on the porch, we could still hear her screaming. But by now, after a year of doing it, we're sort of used to it, which is terrible, if you think about it.
The night between Sunday and Monday was not great. Liam would get temporary relief after the pain medication was given, but returned to discomfort in between. On Monday morning she spiked a very high fever, which is also true for the time of this writing (Monday night). Her fever actually continued to climb during the day.
Liam went to the hospital on Monday for her regularly scheduled dialysis. But after they saw her they decided to keep her for 24-48 hours for observation. The last time such sentence was said we stayed for a month.
We're now 9 days outside the hospital. The start was sort of rough. Liam swung sharply between feeling lousy and better. But since then things seems to stabilize a bit. The situation is still extremely complex and most likely to stay that way. But within the big, chaotic, confusing picture, it seems that we found a little piece of peacefulness. Not without pain; not without vomiting; not without OOOOWWWWies. But right next to them also periods of feeling good, of smiling. It's written based on the experience of only a few days, so take every word with a serious grain of salt.
Most importantly: When there were problems, we (we as in "Rachel") were able to control them.
Two days ago Liam didn't feel great, to put it mildly. She vomited and complained about not feeling well. Since nothing we tried worked and there was nothing to lose, we put her in her wheelchair and went outside. the minute she felt the hot air she started smiling. The vomiting stopped at once. And she remained comfortable for the rest of the night. But sometimes as soon as she gets outside she immediately ask to return to her bed. And usually at this times it means she would need some kind of pain control medication.
So all in all we experienced a pretty nice weekend so far - with rest, and bike, and friends, and beer. Nothing special, right? Just an ordinary weekend. But we didn't experience such weekend in a llllloooooonnnnnggggg time.
But then came Sunday afternoon:
Liam started not feeling well around 4-5 PM. Go outside Liam? Yes. But she asked to return to her bad immediately. From there things deteriorated rapidly. Within a very short time Liam was screaming out of pain. And just like that the wonderful weekend went down the drain. All the stress returned at one.
By that time we already arranged for dinner. Now, meal time is a sort of down time, pleasure, if you will. But how can you enjoy it (or eat at all, for that matter) when she's screaming right next to you? So we kicked everybody outside to the porch, with one volunteer staying with Liam. Sitting on the porch, we could still hear her screaming. But by now, after a year of doing it, we're sort of used to it, which is terrible, if you think about it.
The night between Sunday and Monday was not great. Liam would get temporary relief after the pain medication was given, but returned to discomfort in between. On Monday morning she spiked a very high fever, which is also true for the time of this writing (Monday night). Her fever actually continued to climb during the day.
Liam went to the hospital on Monday for her regularly scheduled dialysis. But after they saw her they decided to keep her for 24-48 hours for observation. The last time such sentence was said we stayed for a month.
No comments:
Post a Comment