WARNING: A GRAPHIC SECTION IS AHEAD OF YOU. YOU MAY WANT TO SKIP READING TODAY.
Thursday, 2/25/10:
After two quite stressful days at home, Liam had an exceptionally good day. She was alert, pain-free, took a shower - and more: she had a BM, which may have opened a 2-weeks clog in her intestines. We _think_ that the tennis-ball size piece that came out contained the Barium they gave her 2-weeks ago or so in the hospital as part of a test. In other words, for 2 weeks nothing moved. Recall the poor motility we reported back then. (Sure enough, it clogged the toilet....Home Depot's stocks soared again as I got s a plumber snake and rubber gloves to assist the poor motility of our sewage system.)
Anyway, after the shower-and-all-that-jazz, Liam felt pretty good - the best she felt in days. She sat in her chair, watching TV, alert. That was 5-6 PM. Then at 8 things started to change sharply. We put her back in her bed and she started retching right away. It turned into vomiting and around 11:30 PM she started vomiting blood. At midnight we called 911. They are stationed 1 mile away from us. It took them 18 minutes to arrive. Your tax dollars are working well for you. Continue....
Friday, 2/26
We arrived at the ER around 1 AM. We spent most of the time waiting (some x-rays, some labs, other ER-blah-blah). All this time Liam continues to vomit blood and other stuff. As we sat in the ER waiting for a room assignment in the hospital, Rachel told everybody that we want to be in TICU, where we were in the past two months. They told us "little chance since she breathes on her own". DAMN!!! She's too healthy! How ironic. Eventually they DID admit her to the same floor. As we entered everybody greeted us. We all know each other too well. It was a bitter-sweet "reunion" - we left them only 3 days ago. (Rachel asked "where's MY bed?" All parents in the hospital, who stay in the room with their child, are sleeping on a sofa. But Rachel has a special status here and sure enough, they rolled a hospital bed into the room shortly after.)
All day long Liam continued to retch. It was heart breaking. No medication helped.
Late afternoon:
After consultation with the Drs, we decided on two procedures:
1. An endoscope to try to diagnose the bleeding that showed in her vomit.
Results:
a) Blood in the vomit: it's suspected that the blood was caused by the heavy retching. No other significant internal injury was found.
b) Why the retching? According to the GI Drs, the stuff in her belly (and beyond) moves in the opposite way. It should move downstream. In reality it doesn't. That's maybe her #1 problem now: the poor motility. That's the cause of her intense retching, they think. They don't know if it's a GI issue or a brain malfunction. Thus, they also don't know how to help her.
2. An "externalization" of her shunt dump. In English: Her shunts from the brain are dumping fluids in the belly. The Drs want to dump these fluids outside her body for a week to try to if it has any affect on her belly's distention. If she gets a relief, they know that the shunts are causing the distention and they'll try to dump them elsewhere (into a vein or something); if she gets no relief, then it's not the shunts (and they'll simply restore them to the belly). In either case we're looking at two procedures - one today (externalizing) and another next week (internalizing).
Results: It's known that one shunt drains well, while the other is nearly dry. No biggie, per the Dr, since the "wet" one does the job for the entire brain.
Whether the fluids from the shunt are a contributing to the distention will be known only in a few days.
As a result of that procedure, the shunt collectors are now on poles beside her bed. They're set at a measured and fixed height. That height is relative to her head-and-body height on the bed. Until results are known, this height can't be changed. In other words, we can't change her position for the next few days.
As of this writing, 9 PM on Friday night, Liam is still retching. It's more than 24 hours now and still going strong. There's nothing they can do to help her. Despite not sleeping all this time, Liam wouldn't fall asleep. Poor baby. It's difficult to be next to her and witness her suffering.
Saturday (2/17) morning update:
The retching continued well into the night. Just before 1 AM Liam was given one more dose of morphine. That one finally pushed her over the edge and she felt into a deep sleep....at least for 4 hours. Then another dose and she slept till 8. She got her rest. And the terrible retching is gone!!!
Saturday (2/17) morning update:
The retching continued well into the night. Just before 1 AM Liam was given one more dose of morphine. That one finally pushed her over the edge and she felt into a deep sleep....at least for 4 hours. Then another dose and she slept till 8. She got her rest. And the terrible retching is gone!!!
Earlier on Friday:
Today it's Meitav's birthday. In light of the past several months where her family was hardly at home, there was a special significance for this day for her. And here we are, disappearing on her at midnight. So at 6 AM, when we moved Liam from ER to the TICU room and after we didn't sleep all night, Rachel went home to be with Meitav before she goes to school. To give her 20 minutes of special time. Then family and friends took care of Liam the rest of the day.
The Dr's in the house
There were several occasions in the last crazy 36 hours where I told the medical staff what needs to be done, and my advice proved right:
* Early Friday morning, when Liam was at the pick of her retching, she also sweat-ed a lot. Nobody paid any attention to it since retching was the focus. Except for me, who said "I think she has a fever". Turned out I was right. She had 38.1 C (make the conversion yourself, please), which is high for Liam. That was not the reason for the retching, but it sure did not add any comfort to her.
* On Friday PM we talked to one of the senior Drs. She said "we tried everything....I don't know how else to help her". I told her "what's important now is to get Liam some rest....who knows, maybe after a good sleep the retching will be gone..." And that's exactly what happened.
* Just before 1 AM on Saturday, when Liam was still retching hard, the nurse came into the room. She looked helpless. She said that they gave Liam all the possible medication, yet nothing helped. I told her "give her one more morphine". And sure enough, that was the one which pushed her over the edge into the sleep.
There's no better feeling in the world when you can help your child out of suffering. It's even a better feeling when you know you were the one with the ideas.
The Dr's in the house
There were several occasions in the last crazy 36 hours where I told the medical staff what needs to be done, and my advice proved right:
* Early Friday morning, when Liam was at the pick of her retching, she also sweat-ed a lot. Nobody paid any attention to it since retching was the focus. Except for me, who said "I think she has a fever". Turned out I was right. She had 38.1 C (make the conversion yourself, please), which is high for Liam. That was not the reason for the retching, but it sure did not add any comfort to her.
* On Friday PM we talked to one of the senior Drs. She said "we tried everything....I don't know how else to help her". I told her "what's important now is to get Liam some rest....who knows, maybe after a good sleep the retching will be gone..." And that's exactly what happened.
* Just before 1 AM on Saturday, when Liam was still retching hard, the nurse came into the room. She looked helpless. She said that they gave Liam all the possible medication, yet nothing helped. I told her "give her one more morphine". And sure enough, that was the one which pushed her over the edge into the sleep.
There's no better feeling in the world when you can help your child out of suffering. It's even a better feeling when you know you were the one with the ideas.
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