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Wednesday, April 28, 2010
Tuesday, April 27, 2010
We're back "home"
"Home" as in TICU. Liam is out of PICU (the real ICU) and onto her regular floor. In truth, the intensive Drs of the intensive care unit didn't do much for her or to her. She was there mostly for close monitoring. Since nothing is going on and she's off of all pain medication (which are sedative, and could slow her breathing), there's no reason to keep her there. From the standpoint of the Drs attention, it's better to be in PICU, but for all other purposes the regular floor is better. And PICU is never too far, so we're happy to be out. And back in TICU it really does feel like home. Wait, where's my beer? Ok, I took this one too far, I admit. But it's funny: A few days ago, when we left here for PICU, we said goodbye and "see you soon". How often do people leave a hospital floor and tell the medical staff "see you soon"?
Liam, meanwhile, is sleeping, sleeping, sleeping. She opens her eyes every now and then, complains a little, sometime not, get moved, get read to, and falls back asleep.
"Listen Frog", said Toad, "How long have I been asleep?"
"You've been asleep since November," said Frog.
"Well then," said Toad, "a little more sleep will not hurt me. Come back again and wake me up at about half past May. Good night, Frog."
Liam, meanwhile, is sleeping, sleeping, sleeping. She opens her eyes every now and then, complains a little, sometime not, get moved, get read to, and falls back asleep.
"Listen Frog", said Toad, "How long have I been asleep?"
"You've been asleep since November," said Frog.
"Well then," said Toad, "a little more sleep will not hurt me. Come back again and wake me up at about half past May. Good night, Frog."
Sunday, April 25, 2010
Frog and Toad forever
Y Y EEEEEE SSS
Y Y E S
Y Y E S
Y Y E S
Y Y E S
Y Y E S
Y EEEEEE S
Y E S
Y E S
Y E S
Y E S
Y E S
Y EEEEEE SSS
She finally fell asleep. The Ativan (and the extreme fatigue buildup) finally put her down. The Frog and Toad CD is playing in repeat-mode right behind her pillow. I know that they cathed her and turned her last night, but she's went back to sleep right away. She is still sleeping very deeply. Catching up on her 3-day lost sleep. Her breathing is excellent; her heart rate is good; blood pressure a bit on the LOWER side (go figure), but not too alarming. This is rest at its best.
And I LOVE this nurse (Tracey, just for the record). As she and the resident were talking to me last night, Liam just entered her deep sleep. Tracey immediately picked up on the do-not-disturb mode (which what I'm trying to teach this entire hospital for years now - no joke!). Don't take vital signs and all that jazz. Just let her sleep.
It's only 6 AM Sunday morning. I didn't sleep as good as Liam, who is still snoring now (I don't do well with all the lights and noises). But I'm happy, happy, happy just to listen to her light snoring. Music to my ears. She finally gets a relief. GO ATIVAN!!!
Saturday, April 24, 2010
A small clarification
What I wrote in the previous post about giving Liam stronger meds as being a reason to transfer her to PICU is only half correct (to my defense I would say that I put a warning at the top of the blog: reading here is a risky business). It turns out that there was a working plan all along - even in TICU. The working plan was put together with all the teams: renal, general pedes, respiratory, pain, etc. According to that plan Liam was to get one type of relaxing medication - Ativan - in dripping via the IV line. This medication is known to slow breathing. With Liam this might be critical. To my understanding the TICU Drs didn't want to take the risk that Liam would stop breathing altogether. In the PICU there's much closer monitoring by multiple nurses and technicians, so it's safer to give it to her there.
It's 10:30 PM. Liam fell asleep about an hour ago. I don't know what am I still doing awake writing this silly blog. I should be sleeping now. She could be waking up any minute now and there's no telling if I'll get any sleep tonight. Buenos noches (the night nurse loves my accent).
It's 10:30 PM. Liam fell asleep about an hour ago. I don't know what am I still doing awake writing this silly blog. I should be sleeping now. She could be waking up any minute now and there's no telling if I'll get any sleep tonight. Buenos noches (the night nurse loves my accent).
PICU
Saturday PM UPDATE
Liam is now in PICU - Flower elevators, 4th floor. Many people, when they hear "ICU" are thinking worse. But me, I see it exactly the opposite: I think it's a good thing. Why? From a 10,000 foot view the answer is simple: For the last 3 days Liam is in pain and does not get better. So a new, more intensive care environment with new Drs and a fresh look might be what she needs.
Why the move, according to the Drs?
1. Ability to give her stronger medication with the medical staff being right there to monitor the situation.
2. Ability to stick her with new IV lines. Sounds too simple, but they weren't able to do it on our floor. So far PICU failed with that too. This becomes a problem. She needs more than one IV line so that they can give her more stuff concurrently. Otherwise they have to give everything in stages. Not only it's less efficient, but it matters to the cocktail of meds in her system.
3. New Drs, did we say that already?
4. I think that the people who made the decision took my approach (10,000 foot view). Some of the nurses said that there's nothing in Liam's condition that justifies a move to PICU. After all, Liam is not in critical condition, as far as we know. She breathes on her own, her blood pressure is ok, her other vitals are sort of ok too. But I'm still happy that we're here.
Yes, it's less convenient. Only 3 of us can be in the room; food is not allowed; you can't come in and leave as you please. But these are all minor details. The important thing is Liam's well being. She needs to be here. Period. The big question (for me) is how different of approach the Drs at PICU will take.
Funny, as soon as Liam was situated in the new room, she fell into a deep sleep and she's breathing fine - two things she didn't do so well back in TICU. Unfortunately, it didn't last long. There are still OOOWWWs now.
(Through the glass door I can see the helicopter crew wheeling in a kid. Everybody's running. Can't help but think about that kid. Don't need to watch ER or House or Gray's Anatomy. It's all here. Live and in 3-D.)
Liam is now in PICU - Flower elevators, 4th floor. Many people, when they hear "ICU" are thinking worse. But me, I see it exactly the opposite: I think it's a good thing. Why? From a 10,000 foot view the answer is simple: For the last 3 days Liam is in pain and does not get better. So a new, more intensive care environment with new Drs and a fresh look might be what she needs.
Why the move, according to the Drs?
1. Ability to give her stronger medication with the medical staff being right there to monitor the situation.
2. Ability to stick her with new IV lines. Sounds too simple, but they weren't able to do it on our floor. So far PICU failed with that too. This becomes a problem. She needs more than one IV line so that they can give her more stuff concurrently. Otherwise they have to give everything in stages. Not only it's less efficient, but it matters to the cocktail of meds in her system.
3. New Drs, did we say that already?
4. I think that the people who made the decision took my approach (10,000 foot view). Some of the nurses said that there's nothing in Liam's condition that justifies a move to PICU. After all, Liam is not in critical condition, as far as we know. She breathes on her own, her blood pressure is ok, her other vitals are sort of ok too. But I'm still happy that we're here.
Yes, it's less convenient. Only 3 of us can be in the room; food is not allowed; you can't come in and leave as you please. But these are all minor details. The important thing is Liam's well being. She needs to be here. Period. The big question (for me) is how different of approach the Drs at PICU will take.
Funny, as soon as Liam was situated in the new room, she fell into a deep sleep and she's breathing fine - two things she didn't do so well back in TICU. Unfortunately, it didn't last long. There are still OOOWWWs now.
(Through the glass door I can see the helicopter crew wheeling in a kid. Everybody's running. Can't help but think about that kid. Don't need to watch ER or House or Gray's Anatomy. It's all here. Live and in 3-D.)
What's with all these ICU's?
In the hospital there are several Intensive Care Units (ICU), according to the area of expertise (cardio, etc.) PICU is sort of a general Pediatric ICU. TICU is Technical. It's not an ICU at all. It's somewhere between the general pediatric floor and the PICU. It's quite open. Anybody can come and go as they please. This is as opposed to the PICU (and other ICU's) where hygene and access are tightly controlled (in other words, no beer fridge. DRAT, said Toad). We can't even eat in the room - at least not officially.Angels
We're surrounded by many human angels. I touched on it several times before and I'll never get tired of mentioning these good soals. Some bring us food, some drive for us, some clean for us, some spend time with the girls. Some are even beer angels. And I probably forgot some. My appology if I left anybody out. Today, within minutes of the announcement that Liam goes up to PICU, it was arranged that somebody was here to help and since both Rachel and I were here, that somebody showed up at home to be with Meitav. We're really fortunate to be surrounded by such a lovely community. (I would, however, argue about the amount and availability of the Beer AngAles. Can never have enough of those.)Deep thoughts
If I had a hammer, wait, I have a hammer. Nevermind.
Friday, April 23, 2010
LIVE and uncensored; Friday early AM
From being extremely sleepy and then lethargic earlier in the week, Liam's condition flipped a 180 degrees on Thursday. I'm writing these words early Friday morning, 4-5 AM, after 12 or more hours of Liam screaming of pain. It continues as I'm writing this. She's right here, next to me
OOOOOOWWWWWWW
I DON'T FEEL WELL
OOOOOWWWWWWWWWWWWW
NO
NO
NO
I DON'T FEEL WELL
Multiply the above by (10 times a minute) X (60 minutes an hour) X (12 hours plus).
Oh, the hell with the math. My girl is laying next to me screaming out of pain and I have no way to help her. They pumped sooooo many medications into her - it could put down a horse. But she's not only not relaxing, but it seems like the more meds they give her, the worst it gets.
The frustration is everywhere: I'm frustrated since I can't help her; Liam is frustrated since I'm her dad, the one who fixes things, the one who should help her - and I do nothing; the medical staff is frustrated too, maybe.
There's no way my words can describe her suffering or my feelings of inability to help her. The only way to understand is to be here every minute, every OOOOOWW. But truly? The hell with the words too. Who cares? All I care about is that she'd get some relief. That's all.
OOOOOOWWWWWWW
I DON'T FEEL WELL
OOOOOWWWWWWWWWWWWW
NO
NO
NO
I DON'T FEEL WELL
Multiply the above by (10 times a minute) X (60 minutes an hour) X (12 hours plus).
Oh, the hell with the math. My girl is laying next to me screaming out of pain and I have no way to help her. They pumped sooooo many medications into her - it could put down a horse. But she's not only not relaxing, but it seems like the more meds they give her, the worst it gets.
The frustration is everywhere: I'm frustrated since I can't help her; Liam is frustrated since I'm her dad, the one who fixes things, the one who should help her - and I do nothing; the medical staff is frustrated too, maybe.
There's no way my words can describe her suffering or my feelings of inability to help her. The only way to understand is to be here every minute, every OOOOOWW. But truly? The hell with the words too. Who cares? All I care about is that she'd get some relief. That's all.
Tuesday, April 20, 2010
The Sleeping Beauty
Monday, 4-19
The urinary tract infection (UTI) is under control - I think. Liam, however, is very very sleepy for the last few days. In the beginning, it was great. She needed the rest, we needed the rest - it was perfect. But when it continued to beyond the weekend it became worrisome. She started waking up very very gradually yesterday (Sunday) and more today, but she's still very sleepy. Usually she complains while at dialysis. Today, nothing. She was extremely quite.
Well, as we stood there at dialysis, a pain management specialist, who knows Liam, came by and started asking questions about the meds she's getting. With all the politeness I could yank out of my mass storage of kindness and gentleness, I very carefully suggested that she might want to look in the computer rather than rely on our answer. DUH!!! This is something she should have done BEFORE coming to see Liam. DUH #2.
Anyway, when she was done we went back to her room and the nurse looked in the computer. It turned out that for the past several days Liam received Clonidine twice a day!!! This is something we gave at home only at as needed base. It's quite sedative. No wonder she is asleep all this time. Makes me wonder if we ("we" as in Rachel) should inspect each and every step of the medical staff. (On the other hand, maybe she needed all this sleep. Maybe it allowed her time to heal. Maybe it'd do her good.)
Tuesday, 4-20 (hey, 4-20...the Sweetwater Fest was next to us this past weekend...I didn't make it....BLAH!)
Liam is more awake today, but still very quite. Laying awake with her eyes open. She hardly speaks. Only one word: A fly. Not sure why. Does she see something in the air that we don't. HEY, THERE'S A MOSQUITO IN THE ROOM. I saw it. Oh well, i guess she's not imagining it after all.
Memorials
Back in the kibbutz the Jewish holidays were fun. Each holiday had a theme to it and we did stuff: In Shavu`ot we brought "bikurim" for real (except we didn't do any sacrifices to any god); in Chanukah we marched with real torches and ate sufganiot (Israeli doughnuts which taste much better that Crispy Cream); on Rosh Hshanah all 700 of us sat together for a holiday meal; etc. There was always something fun and it was never a religious event. But in the US the Jewish holidays boil down to going to synagogue. Not exactly my cup of tea. There are, however, two occasions that are very important to me and which I attend every year. They're not really Jewish - they're more "Israeli" and they're not at all holidays, but rather memorial days:
Holocaust Day: My dad's entire family - both his parents and 5 brothers and sisters - we murdered in the Latvian forest during WWII. Some say by the Latvian themselves. Only one brother - my dear uncle - survived by working for the Germans and surviving the famous Death March. He still lives today in Israel. An amazing man. So I never had grandparents from my dad's side.
Anyway, the ceremony is held every year at Greenwood cemetery over on the south-west side of town.
Israeli fallen soldiers remembrance day: Everybody in Israel know somebody who lost his/her life in a war or some other hostility event. I have several dear friends who died young. So this day is very important to me too.
This year, however, due to Liam's condition, I wans't able to attend neither ceremony. One could say, metaphorically, that this year rather than deal with the dead I delt with the one who needs our support to stay alive.
The urinary tract infection (UTI) is under control - I think. Liam, however, is very very sleepy for the last few days. In the beginning, it was great. She needed the rest, we needed the rest - it was perfect. But when it continued to beyond the weekend it became worrisome. She started waking up very very gradually yesterday (Sunday) and more today, but she's still very sleepy. Usually she complains while at dialysis. Today, nothing. She was extremely quite.
Well, as we stood there at dialysis, a pain management specialist, who knows Liam, came by and started asking questions about the meds she's getting. With all the politeness I could yank out of my mass storage of kindness and gentleness, I very carefully suggested that she might want to look in the computer rather than rely on our answer. DUH!!! This is something she should have done BEFORE coming to see Liam. DUH #2.
Anyway, when she was done we went back to her room and the nurse looked in the computer. It turned out that for the past several days Liam received Clonidine twice a day!!! This is something we gave at home only at as needed base. It's quite sedative. No wonder she is asleep all this time. Makes me wonder if we ("we" as in Rachel) should inspect each and every step of the medical staff. (On the other hand, maybe she needed all this sleep. Maybe it allowed her time to heal. Maybe it'd do her good.)
Tuesday, 4-20 (hey, 4-20...the Sweetwater Fest was next to us this past weekend...I didn't make it....BLAH!)
Liam is more awake today, but still very quite. Laying awake with her eyes open. She hardly speaks. Only one word: A fly. Not sure why. Does she see something in the air that we don't. HEY, THERE'S A MOSQUITO IN THE ROOM. I saw it. Oh well, i guess she's not imagining it after all.
Memorials
Back in the kibbutz the Jewish holidays were fun. Each holiday had a theme to it and we did stuff: In Shavu`ot we brought "bikurim" for real (except we didn't do any sacrifices to any god); in Chanukah we marched with real torches and ate sufganiot (Israeli doughnuts which taste much better that Crispy Cream); on Rosh Hshanah all 700 of us sat together for a holiday meal; etc. There was always something fun and it was never a religious event. But in the US the Jewish holidays boil down to going to synagogue. Not exactly my cup of tea. There are, however, two occasions that are very important to me and which I attend every year. They're not really Jewish - they're more "Israeli" and they're not at all holidays, but rather memorial days:
Holocaust Day: My dad's entire family - both his parents and 5 brothers and sisters - we murdered in the Latvian forest during WWII. Some say by the Latvian themselves. Only one brother - my dear uncle - survived by working for the Germans and surviving the famous Death March. He still lives today in Israel. An amazing man. So I never had grandparents from my dad's side.
Anyway, the ceremony is held every year at Greenwood cemetery over on the south-west side of town.
Israeli fallen soldiers remembrance day: Everybody in Israel know somebody who lost his/her life in a war or some other hostility event. I have several dear friends who died young. So this day is very important to me too.
This year, however, due to Liam's condition, I wans't able to attend neither ceremony. One could say, metaphorically, that this year rather than deal with the dead I delt with the one who needs our support to stay alive.
Thursday, April 15, 2010
Dear Diary
Sunday, 4-11-2010
This really started Saturday. On Sat Liam had a pretty good day. In a rare occurrence both Rachel and I did leisure activities at the same time while a nurse stayed with Liam in the house. Liam had a restful day. That night, however, and into Sunday, things changed sharply. She was full of gas or something. She was in pain and none of the medicines she received helped any. And if she did calm down for a few minutes here or there or if I was able to relieve Rachel for a brief sleep, just then I received an emergency call from work (I was on call). Bottom line: all three of us were up most of the night.
So here we are yet again: Liam is in pain and discomfort. How do you help her as a parent? You do the obvious - give any medicine available and permitted; you try to comfort her; you try to get her attention on something else - a story, a movie; you try to get her to sleep. And sometimes there's nothing at all you can do except tell her how sorry you are that she's in pain. Meanwhile, life goes on. People are coming in and out, we eat our meals, we fold laundry (the never ending activity) - all while she's moaning. A terrible reality.
The pains are explained by the side effects of this medication (which I can't remember the name of). The last time Liam was hospitalized, she was constipated. One of the suggested solution was this antibiotic, which has side effects of loose stool, but also gas and stomach ache. Well, stool was moving alright, but her discomfort was very disturbing. The GI Dr said there's nothing they can do - just wait for it to subside. But what if she's wrong? And what if there is something else there? What do you do - going to the ER or staying at home? This is a returning question. Meanwhile, Liam's in pain. I'M NOT SURE i'M DESCRIBING THE SITUATION VERY WELL. Maybe these are just words on the screen here. There's no way to convey what it's like except for being here every hour, every minute, every second, every OOOOWWWW.
Sometimes around 1 pm she finally fell into a good sleep....that lasted only an hour or so. Then her suffering continued all afternoon long and into the evening. At 7 PM she finally fell into a good sleep - a bit too late - I missed the Masters in between her suffering and the emergency calls from work. If it wasn't so annoying, it would have been funny: every time I finally sat down to relax, ring-ring, they're calling from work again. How do they always know?
Alright, what am I blah-blah-blah-ing about? Time is precious. I better get some rest before either Liam wakes up or they call again. We're soooooo tired. All we want is to slee......DAMN, can't even complete the sentence. Liam woke up after only one hour and continued OOOWW, OOOOWWWW OOOOOOOOWWWWWWW into the night. Is all of this really just from side effect of this medication? (Eryped, that's the medication. See, I remembered...NOT....I went and looked in the medicine stash...) Hard to believe.
Monday, 4-12
This continued pretty much throughout the day. Around noon Rachel took Liam to the hospital for an x-ray of the J-tube. They were supposed to be there anyway for dialysis, but her continued suffering required more attention.
After the x-ray they went up to dialysis. They were told that the GI people will meet them there and report the results of the x-ray.
The J-tube turned out to be ok. The problem arose when a GI resident told Rachel that he thinks it's nothing serious and they should go home. He didn't even show up to discuss it. It was over the phone via a 3rd person. Rachel thought she was going crazy. It's hard enough to care for Liam at such difficult times, the last thing you need is a Dr with an attitude problem. This is not the first time Drs from the GI department are giving us grief. They don't show up, they don't return calls, they don't take responsibility. Something stinks there.
Rachel said she's not leaving the hospital with Liam in so much pain. But with nobody else to talk to, they were back home after several hours. Very frustrating.
Back home, Liam ate something light and fell asleep. Let's see how long she will sleep this time.
Later that night (still Monday): she stayed asleep only for 1-2 hours. The rest of the night was half-and-half. Better than last night, but still a bit OOOOWWWWie.
Tuesday, 4-13:
Liam's asleep most of the day. Rachel talked with a senior GI Dr, who said to her: "I'm surprised Liam is not hospitalized....she has pancreatitis". To which Rachel replied "I'm surprised too...how should I know if nobody tells us????????" Another dropped ball by the GI folks.
Towards evening Liam showed more and more discomfort. It was sort of clear that with the GI's comment and Liam's condition, we will arrive at the hospital that night. Still, what if she falls into a deep sleep at home? Why take her in?
(And how does Meitav, who works hard all day at school and dance, feels coming homes late in the evening and into the moaning of Liam? It can't be easy.)
I told Rachel I'm heading to bed. Wake me up when you need me.
Deep into the night I woke up. Everything was quite. Too quite. No moaning, no oxygen machine, no monitor, no Toad-and-Frog on the CD. I understood: they left for the hospital without waking me up. (It took me years to train Rachel for this moment. Finally I see the results of all this hard work. She understands. I need the rest for the weekend sporting events on the tube. I like her. I think I'll keep her.)
At the hospital, it's the same old story. They spent all night long in the ER. x-ray this, test that. At some point, Liam passed some GOOD gas (I thought I'm the only one in the family able to do this...) and that cracked her up. Then she pooped. Then she felt into a DEEP sleep. They moved her, they x-rayed her, they poked her with a needle. No reaction from her. Dead asleep.
They discovered a urinary tract infection. Yes, again. This is something that is almost impossible to prevent - especially with Liam. Here's why:
A. She does not pee on her own.
B. Often cathing her may not be a 100% clean, even if we keep everything sterile.
C. She's in diapers (so even when she does pee on her own, all the germs are still there).
D. She's a girl (boys in diapers also suffer from UTI, but not as often).
E. Weak immune system.
So the UTI is expected to return in the future. It's an unfortunate, cruel, unfair reality.
Wednesday, 4-14
So that's it, we're back in the hospital, room 2214. This is a nice, big room. My [bad] instinct kicked in right away. I asked for a big screen TV and a beer fridge. What? The worst I can get is a NO.
Here's the story with the pancreatitis, as much as I understand it (which is not much....unfortunately, I'm your only source of information): the "bad numbers", which indicate of infection to the pancreas, are fluctuating. Within a few days we heard yes she has the infection; no she doesn't have it. Also, if she does have it, there's nothing to do except for letting the body heal itself - again, to my lame understanding.
As for the UTI, they discovered two types of bacteria so she will get plenty of antibiotics soon.
It might be a new reality that we will have to check in-and-out of the hospital every so often from now on.
On Wednesday night everybody slept well - finally. Even the cat, who normally wakes me up between 3-4, slept in - until 4:45.
But other than all of the above, everything is really a-ok.
This really started Saturday. On Sat Liam had a pretty good day. In a rare occurrence both Rachel and I did leisure activities at the same time while a nurse stayed with Liam in the house. Liam had a restful day. That night, however, and into Sunday, things changed sharply. She was full of gas or something. She was in pain and none of the medicines she received helped any. And if she did calm down for a few minutes here or there or if I was able to relieve Rachel for a brief sleep, just then I received an emergency call from work (I was on call). Bottom line: all three of us were up most of the night.
So here we are yet again: Liam is in pain and discomfort. How do you help her as a parent? You do the obvious - give any medicine available and permitted; you try to comfort her; you try to get her attention on something else - a story, a movie; you try to get her to sleep. And sometimes there's nothing at all you can do except tell her how sorry you are that she's in pain. Meanwhile, life goes on. People are coming in and out, we eat our meals, we fold laundry (the never ending activity) - all while she's moaning. A terrible reality.
The pains are explained by the side effects of this medication (which I can't remember the name of). The last time Liam was hospitalized, she was constipated. One of the suggested solution was this antibiotic, which has side effects of loose stool, but also gas and stomach ache. Well, stool was moving alright, but her discomfort was very disturbing. The GI Dr said there's nothing they can do - just wait for it to subside. But what if she's wrong? And what if there is something else there? What do you do - going to the ER or staying at home? This is a returning question. Meanwhile, Liam's in pain. I'M NOT SURE i'M DESCRIBING THE SITUATION VERY WELL. Maybe these are just words on the screen here. There's no way to convey what it's like except for being here every hour, every minute, every second, every OOOOWWWW.
Sometimes around 1 pm she finally fell into a good sleep....that lasted only an hour or so. Then her suffering continued all afternoon long and into the evening. At 7 PM she finally fell into a good sleep - a bit too late - I missed the Masters in between her suffering and the emergency calls from work. If it wasn't so annoying, it would have been funny: every time I finally sat down to relax, ring-ring, they're calling from work again. How do they always know?
Alright, what am I blah-blah-blah-ing about? Time is precious. I better get some rest before either Liam wakes up or they call again. We're soooooo tired. All we want is to slee......DAMN, can't even complete the sentence. Liam woke up after only one hour and continued OOOWW, OOOOWWWW OOOOOOOOWWWWWWW into the night. Is all of this really just from side effect of this medication? (Eryped, that's the medication. See, I remembered...NOT....I went and looked in the medicine stash...) Hard to believe.
Monday, 4-12
This continued pretty much throughout the day. Around noon Rachel took Liam to the hospital for an x-ray of the J-tube. They were supposed to be there anyway for dialysis, but her continued suffering required more attention.
After the x-ray they went up to dialysis. They were told that the GI people will meet them there and report the results of the x-ray.
The J-tube turned out to be ok. The problem arose when a GI resident told Rachel that he thinks it's nothing serious and they should go home. He didn't even show up to discuss it. It was over the phone via a 3rd person. Rachel thought she was going crazy. It's hard enough to care for Liam at such difficult times, the last thing you need is a Dr with an attitude problem. This is not the first time Drs from the GI department are giving us grief. They don't show up, they don't return calls, they don't take responsibility. Something stinks there.
Rachel said she's not leaving the hospital with Liam in so much pain. But with nobody else to talk to, they were back home after several hours. Very frustrating.
Back home, Liam ate something light and fell asleep. Let's see how long she will sleep this time.
Later that night (still Monday): she stayed asleep only for 1-2 hours. The rest of the night was half-and-half. Better than last night, but still a bit OOOOWWWWie.
Tuesday, 4-13:
Liam's asleep most of the day. Rachel talked with a senior GI Dr, who said to her: "I'm surprised Liam is not hospitalized....she has pancreatitis". To which Rachel replied "I'm surprised too...how should I know if nobody tells us????????" Another dropped ball by the GI folks.
Towards evening Liam showed more and more discomfort. It was sort of clear that with the GI's comment and Liam's condition, we will arrive at the hospital that night. Still, what if she falls into a deep sleep at home? Why take her in?
(And how does Meitav, who works hard all day at school and dance, feels coming homes late in the evening and into the moaning of Liam? It can't be easy.)
I told Rachel I'm heading to bed. Wake me up when you need me.
Deep into the night I woke up. Everything was quite. Too quite. No moaning, no oxygen machine, no monitor, no Toad-and-Frog on the CD. I understood: they left for the hospital without waking me up. (It took me years to train Rachel for this moment. Finally I see the results of all this hard work. She understands. I need the rest for the weekend sporting events on the tube. I like her. I think I'll keep her.)
At the hospital, it's the same old story. They spent all night long in the ER. x-ray this, test that. At some point, Liam passed some GOOD gas (I thought I'm the only one in the family able to do this...) and that cracked her up. Then she pooped. Then she felt into a DEEP sleep. They moved her, they x-rayed her, they poked her with a needle. No reaction from her. Dead asleep.
They discovered a urinary tract infection. Yes, again. This is something that is almost impossible to prevent - especially with Liam. Here's why:
A. She does not pee on her own.
B. Often cathing her may not be a 100% clean, even if we keep everything sterile.
C. She's in diapers (so even when she does pee on her own, all the germs are still there).
D. She's a girl (boys in diapers also suffer from UTI, but not as often).
E. Weak immune system.
So the UTI is expected to return in the future. It's an unfortunate, cruel, unfair reality.
Wednesday, 4-14
So that's it, we're back in the hospital, room 2214. This is a nice, big room. My [bad] instinct kicked in right away. I asked for a big screen TV and a beer fridge. What? The worst I can get is a NO.
Here's the story with the pancreatitis, as much as I understand it (which is not much....unfortunately, I'm your only source of information): the "bad numbers", which indicate of infection to the pancreas, are fluctuating. Within a few days we heard yes she has the infection; no she doesn't have it. Also, if she does have it, there's nothing to do except for letting the body heal itself - again, to my lame understanding.
As for the UTI, they discovered two types of bacteria so she will get plenty of antibiotics soon.
It might be a new reality that we will have to check in-and-out of the hospital every so often from now on.
On Wednesday night everybody slept well - finally. Even the cat, who normally wakes me up between 3-4, slept in - until 4:45.
But other than all of the above, everything is really a-ok.
Thursday, April 8, 2010
Back home
Apparently I finally prayed to the right god, because my prayers were answered: I will watch the Masters from home. Oh yeah, and Liam's home. (To the spirituals among you who want a tip of which gods work best for me, well, I prayed to the only deities I'm following - the golf gods. Just like in the major religions of the world, it (the PGA) is also monotheistic. It follows one god and I get to see him again, YEEPPIE).
So what changed in those 4 nights in the hospital? Two things, both of them new medicines:
1. A muscle relaxant - Klonopin - which helps Liam sleeps. The reason it was not used before was because before dialysis started it severely suppressed her breathing. Now it's pretty safe to give it to her. We will need to weŚ©n her off it soon, but right now she needs the rest.
2. "Cleanup stuff". It's pretty messy here right now, but it's far better than when "things" are not moving out. I don't need to dive into the details, right?
And there's no pain now and she's not hot-cold anymore. So at the moment things are looking the calmest they have been looking in weeks. Hoping for some stability and continuity.
So what changed in those 4 nights in the hospital? Two things, both of them new medicines:
1. A muscle relaxant - Klonopin - which helps Liam sleeps. The reason it was not used before was because before dialysis started it severely suppressed her breathing. Now it's pretty safe to give it to her. We will need to weŚ©n her off it soon, but right now she needs the rest.
2. "Cleanup stuff". It's pretty messy here right now, but it's far better than when "things" are not moving out. I don't need to dive into the details, right?
And there's no pain now and she's not hot-cold anymore. So at the moment things are looking the calmest they have been looking in weeks. Hoping for some stability and continuity.
Tuesday, April 6, 2010
Too Much Tuna
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?)
Monday, April 5, 2010
Sunday, April 4, 2010
Ups and downs
As explained earlier, the dialysis days are not great days for Liam. Is she in pain? Nauseous? Something else? As usual with Liam, it's hard to point a finger at it. She whines "Wendy's, Chick-fil-a, tuna, I'm cold, OWWWW" really no-stop. And no, she's not really hungry every time she mention those. Finally, late into the night and after many calming medications, she falls asleep. But often not for too long. We (as in mostly Rachel) have to get up several times during the night and help her calm down and fall asleep again. Then she sleeps deep into the day.
The days following dialysis are usually better - but not necessarily so. Even when Liam feels well she's still bugging us about food. She's not allowed or supposed to eat much as her digestion system is out of whack.
But (Saturday) now she really *IS* hungry. We decided to stop feeding her - as cruel as it sound - because food may causing her more discomfort than good. So she's yelling I'm hungry, I'm hungry, I'm hungry. What do you do? Damned if you do, damned if you don't. Regardless, it's just difficult to starve your own child - even more so when we eat as usual.
This is not the first time Liam is "constipated" (the double quotes since we really don't know that she's constipated. I mean, she's not "going", but maybe it's something in the brain that limits her - not the digestive system). The difference is that previous constipation occurred during the eating cycle, whereas now she hasn't eaten solid food for several months. So we're much more cautious.
Medication
Liam gets 5-6 medication 2-3 times a day (well, I should know the exact number, but I don't feel like getting up and looking). On the weekends and evenings I have the honor and privilege to prepare and give those (it's beyond me how Rachel started trusting me). We need...
7 ML from med A
1.5 ML of med B
3.5 pills crushed, dissolved in water
0.6 ML from this very well known med
and so on and so forth. 5-6 syringes in all.
Going to Liam. Removing her blankets. Finding the J-tube under her clothing.
Attach syringe A; open the prevent-back-flow shut valve; inject the medication; close the valve; attach syringe B...and so on and so forth until you're done. At the end, push the last medication with plain water.
Don't forget to shut the valve when all said and done.
At the dialysis
On the dialysis floor you see regular kids. When you see them elsewhere, you don't know that they need dialysis 3 times a week. You don't know that they're very sick. They look completely normal. They arrive, change into a hospital gown, get hooked up to the machine, and doing their homework on their laptops.
As Liam arrives they take her vital signs and weight and maybe a few other things. Then they put her on the recliner and hook her up to the machine for 3 hours of suffering - per Liam. (Other kids don't seem to suffer, but she does. Still, it's better for her to go through that "hell" several times a week with the larger goal of improving her quality of life. And maybe things will improve, who knows?
The Laundry Basket Guide for Laundry Basket Guides
Too much laundry to fold. Who has time for these stupid guides?
As explained earlier, the dialysis days are not great days for Liam. Is she in pain? Nauseous? Something else? As usual with Liam, it's hard to point a finger at it. She whines "Wendy's, Chick-fil-a, tuna, I'm cold, OWWWW" really no-stop. And no, she's not really hungry every time she mention those. Finally, late into the night and after many calming medications, she falls asleep. But often not for too long. We (as in mostly Rachel) have to get up several times during the night and help her calm down and fall asleep again. Then she sleeps deep into the day.
The days following dialysis are usually better - but not necessarily so. Even when Liam feels well she's still bugging us about food. She's not allowed or supposed to eat much as her digestion system is out of whack.
But (Saturday) now she really *IS* hungry. We decided to stop feeding her - as cruel as it sound - because food may causing her more discomfort than good. So she's yelling I'm hungry, I'm hungry, I'm hungry. What do you do? Damned if you do, damned if you don't. Regardless, it's just difficult to starve your own child - even more so when we eat as usual.
This is not the first time Liam is "constipated" (the double quotes since we really don't know that she's constipated. I mean, she's not "going", but maybe it's something in the brain that limits her - not the digestive system). The difference is that previous constipation occurred during the eating cycle, whereas now she hasn't eaten solid food for several months. So we're much more cautious.
Medication
Liam gets 5-6 medication 2-3 times a day (well, I should know the exact number, but I don't feel like getting up and looking). On the weekends and evenings I have the honor and privilege to prepare and give those (it's beyond me how Rachel started trusting me). We need...
7 ML from med A
1.5 ML of med B
3.5 pills crushed, dissolved in water
0.6 ML from this very well known med
and so on and so forth. 5-6 syringes in all.
Going to Liam. Removing her blankets. Finding the J-tube under her clothing.
Attach syringe A; open the prevent-back-flow shut valve; inject the medication; close the valve; attach syringe B...and so on and so forth until you're done. At the end, push the last medication with plain water.
Don't forget to shut the valve when all said and done.
At the dialysis
On the dialysis floor you see regular kids. When you see them elsewhere, you don't know that they need dialysis 3 times a week. You don't know that they're very sick. They look completely normal. They arrive, change into a hospital gown, get hooked up to the machine, and doing their homework on their laptops.
As Liam arrives they take her vital signs and weight and maybe a few other things. Then they put her on the recliner and hook her up to the machine for 3 hours of suffering - per Liam. (Other kids don't seem to suffer, but she does. Still, it's better for her to go through that "hell" several times a week with the larger goal of improving her quality of life. And maybe things will improve, who knows?
The Laundry Basket Guide for Laundry Basket Guides
Too much laundry to fold. Who has time for these stupid guides?
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