The last few days Liam was sort of ok during the day, but growing more and more agitated at night and having hard time falling asleep and staying asleep. The pick came on Sunday (4/4/10). She was agitated also during the day. She was talking mostly about food. I'm hungry, Wendy's, Chick-Fil-A, tuna, tuna, tuna. But also OWWWWW, EEMA, ABBA, ABBA, ABBA. She said she was cold while she was dripping sweat. This was going on all day long - nonstop. As the evening approached it got worse and as night fell it became almost unbearable. I should probably explain that she REALLY WAS hungry. We intentionally prevented her from eating since she didn't "go". See previous posting. While she was hungry, it is unlikely that her body suffered as she gets an ongoing supply of TPN ("food" stuff into the vain).
We used all kind of ways to try to help her poop. No luck. But the feeling was that this is not the only thing that is going on. Liam **WAS** constipated badly before. She was never that agitated. So what do you do? Do you take her to the ER, knowing it'd take them several hours before they start looking at her? Or do you hope that something changes and either we can handle it at home or she falls asleep? And what is the threshold? How much do you let her suffer? Not an easy call either way.
Eventually at 11:30 Sunday night, after nearly 12 hours of nonstop complaining, Rachel took her to the ER. This was not an emergency. Liam's vital signs were good. We discussed the situation several times before deciding on going.
But the suffering didn't end there. Liam and Rachel were up all night - this is after a full day of Liam complaining. At some point, they gave her "something" to help her poop. I'll save you the details, but will say that there was "enough" there to cause discomfort. You would expect that after all this massive "cleansing" she be relieved. Unfortunately, that was not the case. She continued to complain. And, she continued to ask for food.
Additionally, they found that:
1. Her J-tube moved from the intestines back to the stomach.
2. She has a urinary tracts infection.
She was admitted to the hospital - TICU, room 2213. That's the same department and room and nurses and Drs as before. Last night, after dialysis, they gave her a new medicine that put her out and allowed her to finally get some sleep. To put things in perspective, prior to this medication she was up for about 36 hours straight. Talking, complaining, the entire time - nonstop. Makes you wonder how such a sick child has so much energy to keep it going and going and going. She's very strong willed, but was also suffering a lot. Liam does not complain so much when life is good. That was clearly too much.
So what is the "official" reason for her admission, you might ask. Nothing in specific and all of the above at the same time. Rachel described it best: If we took Liam to the ER on almost any given day, they might find a reason to hospitalize her. The situation is soooooo fragile.
DRAT!
We found a few books we used to read to Liam several years ago. Frog and Toad. Books for very young kids. Anyway, it's amazing how much Liam remembers from these books after all these years of multiple surgeries, brain events, new books, and who knows what else. The brain is working!!!
Toad woke up.
"Drat!", he said. "This house is a mess......" A few of her favorite lines. So the other day, as she arrived at dialysis, not her favorite spot, to put it mildly, intentionally or not she said "DRAT!", which fit the situation perfectly.
The Laundry Basket Guide to What Happens When Life's Too Good
All in all we were 13 days at home between hospitalizations. I didn't count how many loads of laundry we made, but it was A LOT (luckily, there was no important golf tournament going on). Our trash is full all the time. The dishwasher is running a lot. And there was a lot of work with Liam.
But there was also a lot of good. There was a nurse to help with Liam, freeing Rachel to do things that normal people do. We had two parties during this time. And most importantly, Liam got to be home, sit on the porch, take small walks in the `hood.
The astute reader already picked up on the real reason why we're back in the hospital: have to give the washer-and-dryer some rest. (At the same time, I'm looking for a Dr who understands that Liam has to leave the hospital before the weekend. The Masters, you know. And the Super Classico: Real Madrid - Barcelona. Am I pushing it too far? What's the price, 10, 15 laundry baskets?)
We used all kind of ways to try to help her poop. No luck. But the feeling was that this is not the only thing that is going on. Liam **WAS** constipated badly before. She was never that agitated. So what do you do? Do you take her to the ER, knowing it'd take them several hours before they start looking at her? Or do you hope that something changes and either we can handle it at home or she falls asleep? And what is the threshold? How much do you let her suffer? Not an easy call either way.
Eventually at 11:30 Sunday night, after nearly 12 hours of nonstop complaining, Rachel took her to the ER. This was not an emergency. Liam's vital signs were good. We discussed the situation several times before deciding on going.
But the suffering didn't end there. Liam and Rachel were up all night - this is after a full day of Liam complaining. At some point, they gave her "something" to help her poop. I'll save you the details, but will say that there was "enough" there to cause discomfort. You would expect that after all this massive "cleansing" she be relieved. Unfortunately, that was not the case. She continued to complain. And, she continued to ask for food.
Additionally, they found that:
1. Her J-tube moved from the intestines back to the stomach.
2. She has a urinary tracts infection.
She was admitted to the hospital - TICU, room 2213. That's the same department and room and nurses and Drs as before. Last night, after dialysis, they gave her a new medicine that put her out and allowed her to finally get some sleep. To put things in perspective, prior to this medication she was up for about 36 hours straight. Talking, complaining, the entire time - nonstop. Makes you wonder how such a sick child has so much energy to keep it going and going and going. She's very strong willed, but was also suffering a lot. Liam does not complain so much when life is good. That was clearly too much.
So what is the "official" reason for her admission, you might ask. Nothing in specific and all of the above at the same time. Rachel described it best: If we took Liam to the ER on almost any given day, they might find a reason to hospitalize her. The situation is soooooo fragile.
DRAT!
We found a few books we used to read to Liam several years ago. Frog and Toad. Books for very young kids. Anyway, it's amazing how much Liam remembers from these books after all these years of multiple surgeries, brain events, new books, and who knows what else. The brain is working!!!
Toad woke up.
"Drat!", he said. "This house is a mess......" A few of her favorite lines. So the other day, as she arrived at dialysis, not her favorite spot, to put it mildly, intentionally or not she said "DRAT!", which fit the situation perfectly.
The Laundry Basket Guide to What Happens When Life's Too Good
All in all we were 13 days at home between hospitalizations. I didn't count how many loads of laundry we made, but it was A LOT (luckily, there was no important golf tournament going on). Our trash is full all the time. The dishwasher is running a lot. And there was a lot of work with Liam.
But there was also a lot of good. There was a nurse to help with Liam, freeing Rachel to do things that normal people do. We had two parties during this time. And most importantly, Liam got to be home, sit on the porch, take small walks in the `hood.
The astute reader already picked up on the real reason why we're back in the hospital: have to give the washer-and-dryer some rest. (At the same time, I'm looking for a Dr who understands that Liam has to leave the hospital before the weekend. The Masters, you know. And the Super Classico: Real Madrid - Barcelona. Am I pushing it too far? What's the price, 10, 15 laundry baskets?)
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