How long does it take to write a sentence? I'm a slow writer. It took me about 5 seconds to write the following sentence, which is how I started this post: Liam is a-ok. She's resting comfortably. She got a good night sleep. She got a blood transfusion during the night, plus plasma. It took almost as fast for Liam's condition to change 180 degrees. Now (10-11 Sunday am) she's in pain again. Nobody knows why or how it came about. And, now (6-8 Sunday PM) she's comfortable again (and I'm being really careful with this term), but it can change any minute.
If I was a sports reporter I could see myself sitting in the box and writing a play-by-play description of the hospital room. Otherwise it sometimes too difficult to update the blog. For example:
She's breathing well right now. Things are moving in the right direction.
BUT OH NO, what a dramatic change....she's now carrying the ball toward her own goal line.
And, things are under control again.
But oh, how the game changes course again....she's all OOOOWWWWIE, her pulse rate and blood pressure is sky high.....
etc,. etc., etc. You get the point: things are just too crazy. They change by the minute from white to black and back to white.
The art of science
Most Drs take the scientific approach - as they should. But sometimes, this approach is missing the point a bit. Let me give you an example:
When Liam doesn't feel good, she doesn't know how to express herself. It's mostly OOOOWWWWW, it hurts, Mommy. So when a certain Dr comes and starts poking her, he/she asks:
Where does it hurt?
Liam: OWWW
Dr: can you tell me where it hurts?
Liam: OWWW
Dr: Liam, can you please tell me where it hurts?
Liam: OWWW
Dr: does it hurt in the belly?
Liam: Yes
At that point the Dr leaves it alone. He/she got their answer. Now let me give you an example of me conversing with Liam:
Me: Liam, does it hurt in your belly or your head?
Liam: head
Me: Does it hurt in your head or your belly?
Liam: belly
Ah, hmmm, what do you do with that kind of answer?
Here's another example:
Liam: OWWW, OWWW, OWWW
A Dr comes in and greets Liam. He/she hears the OWWW. They then touch Liam's leg lightly, as part of the greeting. (Remember, Liam was already in pain when the Dr stepped in. So coincidentally, when the Dr touches her leg, anothetr OWWW comes out. It has nothing to do with the leg.)
Dr: Oh, your leg is owie?
And I'm sitting nearby and thinking DOH!!!
Camp Simcha
I was never a religious person and I doubt I ever will be one. For a matter of fact, I have an agenda against all religions of the world. The discussion is too large to present in this post. When you grow up as a secular Jew in Israel, it's easy to not like the Jewish religious institutes. I could go on and on on this subject - maybe in a separate post.
But there's one Jewish religious oranizationg that I think very highly of. Not so much because of its religious affiliation, but more for what it does with special need kids. This organization, Chai Lifeline, is the organizer of Camp Simcha (the "ch" in Chai and Simcha is pronounced like the "kh" in Kazakhstan; Chai in Hebrew means "alive" or "life"; Simcha means happiness or joy).
4-5 years ago we were introduced to Camp Simcha. To make a long story short, Liam ended up there for a 2-weeks sleep away camp. It was not easy for us to send a severely disabled child who was heavily depended on us, her parents, and was never been taken care of by others, to this camp. Two weeks away from us? In a another state? Away from her Drs? Taken care by complete strangers? How would they care for her? How would they change her, feed her, communicate with her? How would she feel? It was a heavy decision to make (and the fact that the camp is an orthodox Jewish one did not add any comfort to the decision, if you know what I mean.)
But all these worries proved nonesense. Liam had the time of her life. Not only the camp provided excellent care, she experienced things that she would never had experienced otherwise. And all of that with Liam's well being as the guideline for all activities. I will never forget the smile on her face when we met her at the airport. She was exhausted from a day of travel, but couldn't erase the Simcha she was wrapped in - nor did she try to. She almost came back a different person. You should see the expression on her face every time she watches the DVD from camp. (Thinking of this in retrospect, Liam IS simcha. There's a perfect match between the camp's goals and theme and Liam's personality.) Anyway, Liam returned to Camp Simcha every summer since. There's a strong bond between her and her councelors. The care - and joy - is genuine. I don't have enough good words for this organization.
===========
A few weeks ago, while in the hospital, we applied to the Make A Wish Foundation (look it up). We applied with them before, but back then Liam was not sick enough. Now she is. How ironic. So anyway, we met with the MAWF people and several options for a wish were discussed: a house on the beach, a Disney resort, etc.
Had we chose any of these, Liam would have traveled in an ambulance and with a nurse - all expenses paid, including accommodations etc. But, something didn't feel right. Liam can hardly go out to the garden, how would we schlep her 300-400 miles to the beach? So then Meitav came up with this great idea:
Liam LOVES camp. Obviously she can't go there because (a) of her condition and (b) there's no camp in the winter. So how about bringing camp to Liam?
And that's exactly what happened eventually. Last Sunday, 2/21/2010, Liam had a mini-Camp Simcha. the MAWF and Simcha colaborated in organizing a special event for Liam, right here in the hospital. MAWF provided the funding; Simcha provided the simcha. MAWF flew in 3 of her counselors and organized a bunch of other stuff - a room, food, decoration, and more. The idea was two-fold: bring to Liam the joy of camp with no effort on her side; and do it where she's medically safe and personally feels safe.
These two organizations did a WONDERFUL job. I'm pretty disabled when it comes to describing decoration and party themes, etc. But it seems like everybody had a great fun. Everybody except for.....Liam herself. She had a not-so-great of a day. She hardly opened here eyes. Of course, nobody could have predicted it when the plans were made. Oh well, it is what it is. But Rachel reported that later that evening, when Liam was back in her own bed, it seems like things from that day sunk in. She smiled and joked and re-lived the day.
The Laundry Basket Guide to happy marriage
You wanna tell me you never heard this revelation from me before? Ok, you're in for a life lesson. There are two secrets to a happy marriage life. We will start from the 2nd, the most difficult one:
At the end of each laundry basket you fold, leave a bunch of folded items outside in a visible place. That would prove that you contributed to the effort.
The easy one:
Get your wife a boyfriend. A gay one. He will take care of her: buy her flowers, take her out to lunch and shopping, hear her bitching. You're completely off the hook. Even better: the farther you get, the better. And all of this at no cost and at zero risk. With all the time in the world for football and golf. I mean, really, can you think of a better deal?
But you'd be fooling yourself if you think this wonderful arrangement could last for the long term. If you want it to continue, there's no other choice but get her a few additional gay boyfriends. Still a small price to pay for free and unlimited football and golf.
Well, you heard it here. I tried it and it's working. I give you the tip for free. Don't just thank me - drop some beer on my porch.
Now, if I could only have these boyfriends fold laundry too, life would be perfect. Development is in progress.
Sunday, February 28, 2010
Saturday, February 27, 2010
Plumbing 101
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.
Friday, February 26, 2010
Breaking news
There's a lot to tell since last weekend, but the hot news is that Liam is back in the hospital. She started vomiting blood last night and we called 911 at midnight (and once again, it took them 18 f____g minutes to get to the house). She's not vomiting blood any more, but the gagging continues. She's miserable at the time of this writing. Needless to say, none of us got any sleep. Oh, and today is Meitav's birthday. She woke up to the news that her sister is back in the hospital. More later.
Monday, February 22, 2010
A Suspicious Vehicle In The Driveway
Yes, it is Rachel's minivan. Liam's home. As I mentioned earlier - or did I? - she's home not because she's so much better, but because there's little they can do in the hospital that Rachel can't do at home. I'll try to expand on that in the next few days. Right now we just arrived and worked for the past several hours to settle in, There's TONS of stuff to do.
A few administrative notes:
* Visiting hours are 2-5, until further notice. Please stick to them. Try not to come outside of these hours to allow both Rachel and Liam time to do what they need to do and some rest.
* Food: We appreciate all the good hearts out there. Your help and care and love gives a real relief - and it warms the heart to know we are blessed with such a great community. Some coordination is needed with food delivery, otherwise we sometimes it beans beans and beans 3 times a week (that's a total of 9, for the math-challenged among you....
). Anyway, I'm working on a web-based mechanism, which hopefully will make such coordination simple and straight forward. Until it's put in place, I'll be the coordinator. Please email me with what you intend to bring and when. Please be aware that I may reply to your mail with "thanks, but somebody else already brought a similar dish...would you mind deliver something else?" or "thanks, but we're already covered for that day...would you mind deliver on such-and-such day?" (sounds a bit selfish and greedy, I know. Sorry.) My email is
dorfa1 at gmail dot com
Thanks for the understanding and help.
In between
A few days ago I started writing:
Liam is not in pain - on the most part. Yet, she's not back to being good own self. She's very quite. She watches TV and sleeps. She hardly talks. Maybe small oooowww or Eema (mom) or something like that. At times her eyes are just wondering in space or are locked onto a spot in the ceiling. It's hard to know what she feels. "Liam, do you want kids TV?", no reply. "Liam, are you comfortable?", nada. You get the point.
Her belly is still distended; she vomits or attempts to quite often.
But since then, things changed a bit:
She is in pain. Pain control meds help only sometimes.
Also from a few days ago:
Laundry Basket Voodoo A few administrative notes:
* Visiting hours are 2-5, until further notice. Please stick to them. Try not to come outside of these hours to allow both Rachel and Liam time to do what they need to do and some rest.
* Food: We appreciate all the good hearts out there. Your help and care and love gives a real relief - and it warms the heart to know we are blessed with such a great community. Some coordination is needed with food delivery, otherwise we sometimes it beans beans and beans 3 times a week (that's a total of 9, for the math-challenged among you....
dorfa1 at gmail dot com
Thanks for the understanding and help.
In between
A few days ago I started writing:
Liam is not in pain - on the most part. Yet, she's not back to being good own self. She's very quite. She watches TV and sleeps. She hardly talks. Maybe small oooowww or Eema (mom) or something like that. At times her eyes are just wondering in space or are locked onto a spot in the ceiling. It's hard to know what she feels. "Liam, do you want kids TV?", no reply. "Liam, are you comfortable?", nada. You get the point.
Her belly is still distended; she vomits or attempts to quite often.
But since then, things changed a bit:
She is in pain. Pain control meds help only sometimes.
Also from a few days ago:
After I fold most of the cloths, towards the end of the basket, there some what I call "unidentified items". Having to keep eyes focused on the TV during the folding, naturally I can't pay any attention to these items - unmatched socks, not-my-undy's, not-my-bras, and other such stuff. I...I....I...I don't know what to do with those. So I leave them at the bottom of the basket and I hope they'd disappear on their own. Then I pile new clean laundry on top of them and I see them again after I fold that load. And again. And again. But I don't lose hope. Slowly slowly they will disappear. I totally believe that.
Of course, I didn't think of this trick myself. I'm not THAT smart. I stole it. If the Moses was able to depart the Red Sea and the Messiah will come and Jesus was resurrected, what are a few socks for the all mighty? So all I have to do is believe that they disappear and they will go away, right? RIGHT?
Thursday, February 18, 2010
Is it spring yet?
Back before any of all this started (before Sept 2009), on bad weather days Liam was also "down". Sleepy, slower than usual. Then on sunny days she would sit on the porch, go for a walk in the neighborhood, eat better, be much more lively in general. It's probably a simple coincidence or all just in my head, but the last few days were somewhat similar. When we had snow and below freezing weather, Liam was under a lot of pain to the point that pain medication stopped working. She hardly slept. Then things changed for the better somehow - just as the sun reappeared. In the last two days she's almost pain free, sleeps well, does not get any pain control meds. She's very quite - which is not unusual for her when she recovers from *something*
Da Boss
Did I mention already how great Rachel is with all the situation? Oh well, you'll get a 2nd dose.
Rachel really lives in the hospital. I, who spends weekend nights here at the most, can't understand how she does it. The condensed air, the noisy monitors and pumps, the nurses and Drs who come in-and-out all day long (and nights too), the janitors, the very same walls, and most of all: taking close care of Liam, especially when she doesn't feel well.
But Rachel takes it all in a stride. At times it seems that she even enjoys some of it. Don't let it fool you: she doesn't. However, she does know how to accept the situation as is and not try to fight it. She's making the best of the situation. And meanwhile she created a status for herself. She's not just another parent. Dr's seek her advice on almost everything. And if they don't, she will get them - no joke! Most Drs respect her opinion so much that there's more than just a working relationships here. Some Drs even bring chocolate etc for her. With the nurses she has even better and closer relationships. They share food together, they work together treating Liam. She knows all the nurses on the floor by now. A few even volunteered to care for Liam if/when we get home. But don't let the good and warm relationships with the medical staff fool you. Rachel manages the whole "war" like a true general. If a certain soldier doesn't fit, Rachel takes care of it in one way or another - and she does it in a most non-confrontational manner.
And when she comes into the room, she lights it up. No matter what the situation is.
Here's what I think makes Rachel's attitude so special: most of us, when faced with such situation, try to fight it - maybe even unconsciously. We count the minutes we're in the hospital, we think about our everyday life, our chores, etc. We worry and we get anxious. Rachel, on the contrary, seems to accept the situation as is and just go with the flow. That doesn't mean she doesn't attempt to improve the situation. Of course she does. She's fighting for Liam's health every second, minute, hour, day.... But, with stuff that is beyond her control, like a hospital setup, she's like a cat. Adapting. She decorated the room's walls (with a good friend), she brought her art work over, her paper work, and made it "home".
Laundry Basket Arithmetic
A football game takes 3 hours, on average. A recent study, however, found that the net play time is.....11 minutes. 11 minutes (!!!) that the ball is not on the ground and players are running. That leaves 2 hours and 49 minutes for folding laundry. Or, 10-15 baskets. (But hey, SSSSHHHHHHHH, don's say it out loud. Not to the ladies.) To even things out, not to worry, there's football (eh, soccer) and golf, where you don't even have time to run to the bathroom.
Shallow Thoughts
When I see a Toyota in the rear view mirror, I pull over and call my congressman.
Wednesday, February 17, 2010
Monday, February 15, 2010
Yup, did it again
As soon as I said the word "home", Liam proved me an idiot again. On Sunday PM she started experiencing mysterious pain again. Her belly and feet are puffed up with liquids. She didn't sleep all night, no matter how much relaxing meds they pumped into her or how exhausted she was. I heard her through the phone crying, screaming from pain, and my heart ached. I was unable to help her or Rachel.
Eventually, after many many hours of suffering, she surrendered to the drugs accumulating in her exhausted little body and fell into a deeeeeeeeep sleep. Anyway, discharge was postponed for the time being.
Home care
As mentioned earlier, if/when Liam makes it home, it won't be because she's any better, but because they can't help her any more in the hospital. But caring for her at home won't be easy. In the hospital the nurses and techs are doing everything. At home this plus a lot more will be our responsibility. And when I say "our" I really mean Rachel's, most of the time.
But there's another important aspect of leaving the hospital. Today I asked Rachel why Liam is puffed up again, why the pain. I didn't expect any answer out of knowledge, since nobody really knows the answer to those questions. But Rachel told me this: the more you stay in the hospital, the more "stuff" you get. The nurses keep repeating this mantra a lot. So the hope is that at home Liam will pep up somewhat.
Deep thoughts
Men, who live with two or more women in the house, should be exempt from folding laundry. I mean, what is this piece of clothing? Is it a blouse, it it an undergarment? How do you wear it? How do you fold it?Friday, February 12, 2010
Homeword bound, I wish I wa-a-as
On Wednesday Liam was scheduled to have this test where they give her either food or "something", and follow it down to see how it gets through her system. Just before starting, they scanned her intestines and to their surprise they found the stuff they gave her in a test **LAST WEEK** still sitting there. WOWA!!! We knew about poor motility already, but we didn't know it was that poor. The question now, as before, is weather it's a mechanical issues or what is referred to as "central" - the brain, in plain English. Even more plainly, is there a defect in the digestive system or is the brain not sending the right signals. The GI experts think it is indeed central, but we are not giving up yet. There are still more avenues to explore.
So back to the larger picture:
* It's difficult to say or to know if her seizures are under control, but those that we do observe (I thought I saw one tonight) are less severe.
* Her blood pressure is regulated.
* The kidneys are stable.
* She currently infection free in her urinary system, although we know UTI can always return.
* Her breathing is stable.
* That leaves us with the digestion system and feeding. As mentioned above, there's no feeding now. Liam is being "fed" with IV feeds - clear liquids (fats, sugar, etc.) straight to her blood vessels.
Home?
This coming Tuesday is a target day for us to leave the hospital - after 8 straight weeks. We're taking half the hospital with us: the IV feeds, other "plumbing", a hospital bed, and even a nurse. Working with the nurse and a lab and the Drs, we will take blood and other samples for the different tests several times a week.
So back to the larger picture:
* It's difficult to say or to know if her seizures are under control, but those that we do observe (I thought I saw one tonight) are less severe.
* Her blood pressure is regulated.
* The kidneys are stable.
* She currently infection free in her urinary system, although we know UTI can always return.
* Her breathing is stable.
* That leaves us with the digestion system and feeding. As mentioned above, there's no feeding now. Liam is being "fed" with IV feeds - clear liquids (fats, sugar, etc.) straight to her blood vessels.
Home?
This coming Tuesday is a target day for us to leave the hospital - after 8 straight weeks. We're taking half the hospital with us: the IV feeds, other "plumbing", a hospital bed, and even a nurse. Working with the nurse and a lab and the Drs, we will take blood and other samples for the different tests several times a week.
It should be noted that Liam's coming home not because her condition improved so much, but more because there's nothing that they do in the hospital that we can't do at home. Not to be pessimistic or anything, but I pointed out yesterday that every time we left the hospital for the same reason, our stay at home lasted only a few days because it deteriorated and we had to return. This time I'm more optimistic, though. Why? Maybe just plain stupidity.
Because football season is over and golf is just starting, we decided that Liam can have my TV. In other words, we will put the hospital bed not in her room, but in the TV room. Come April and the Masters, we will have to re-evaluate the situation..... But, I'm not worried. Liam is my sports buddy.
Snow
Meitav (at right) and Giana (neighbor) in the back yard.
Because they work 12 hour shifts and because they have to be at work at 7 AM, many nurses, who just finished their long shift, are staying the night at the hospital. Some can't get back home. Others are staying because the morning nurses won't be able to get there.
Tuesday, February 9, 2010
bits and pieces
Over the past few days Liam's condition is, hmmm, so-so. During the day, when she's awake, she is more present. She talks more; asks questions; even asks about food again (she's not ready to eat, BTW). At night, however, things are not so great. She often doesn't sleep, complains about pain, shows discomfort. Her belly is really distended. Before the belly thingy happened, they tried to feed her - minor, minor amounts. But due to the belly, they stopped it. Today, despite the distention, feeding resumed. She's a little nauseous occasionally.
Mission Impossible
For the past weekend my goals were:
* Sleep two nights in the hospital to give Rachel a break (last week, due to "stuff", I, the one who needs rest the least, got the most of it).
* Go for a long bike ride - cold weather and all.
* For Arsenal to beat Chelsea 5-0.
* Don't let New Orleans win the Super Bowl.
As far as I know all missions completed successfully.
The Vent (stop here if you aren't interested in my whining)
On the one hand, to be in the hospital all the time like Rachel is, takes a heavy toll on you. The sleep at night - in the good case if Liam is sleeping - keeps being interrupted because, well, it's a hospital. All kind of people coming in and out of the room. This traffic is intensified during the day. She needs to talk business with Drs and nurses all day long. Plus you have to keep an eye on Liam all this time. Sometimes to attend to her, sometimes to read her a book, sometimes to comfort her. I'm only experiencing it on the weekend; Rachel is at the hospital nearly 24 hours a day. I can't fathom how she does it.
On the other hand, it's sort of, hmm, how shall I put it? Comforting? Not sure. My point is that you're isolated from the outside. You can't go anywhere. You can't make your own schedule. You just have to go with the flow.
Sometimes I imagine the hospital to be sort of like a prison cell. You spend all your time in a room. You live from one meal to another. Well, I'm exaggerating, but you get the idea. The meals are the main thing that breaks all the hospital hoo-ha. No wonder we're getting fat.
Meanwhile, outside the prison I find that my life is pretty crazy. Between helping Meitav before and after school, my long drives to the office, coming back directly to the hospital, and arriving at home late - it's hectic. And of course then there's the usual things that we all do at home: small shopping, cleaning, folding laundry, fixing the printer, etc. etc. But worst of all is when I have to stuff the fridge and make breakfast for Meitav and myself. Sounds trivial, but I'm really challenged in this area. I always had Rachel feed me. While we have the generous community help, I still find it extremely challenging to run a household.
When I finally make it to the hospital, it's either after work or the nights on the weekends. In both cases I get to see Liam at her tired and not-feeling-well times. I'm missing all the good periods during the day.
Every 4 weeks it is my turn at work to be on call for a week. I can get alerts at any time of the day - around the clock. Naturally, if they call, I have to turn all my attention to work. That means that I can't help Rachel. But, just coming out of a long period of unemployment, the whining stops here.
If I was Bill Gates
(Well, first of all I would free the world of Windows...then..) I would surely quit work so I can relieve Rachel. On the other hand, maybe I wouldn't - just to keep the health insurance. In other words, it's sort of a catch-22. Back to prison. (I can't imagine how less fortunate families with seriously sick people, manage it.) Luckily, I'm not rich so I don't have this terrible dilemma.
The blog and I
Despite the light style of writing, don't believe everything you read. (The blog and I have daily arguments. I'm writing what's happening, but the blog publishes what HE wants.) It's a very stressful time for all of us (don't change this line, blog-ojevich). Naturally, the three of us argue and make up and then fight again and then hug. But at the end, the common goal and most of all, the LOVE, keep us tight together.
Finally, some news from the medical field
Have you heard that they found out that beer is good for your bones? For real!!! It's encouraging to learn that they finally found some symptoms that match the remedy I was using all along.
Mission Impossible
For the past weekend my goals were:
* Sleep two nights in the hospital to give Rachel a break (last week, due to "stuff", I, the one who needs rest the least, got the most of it).
* Go for a long bike ride - cold weather and all.
* For Arsenal to beat Chelsea 5-0.
* Don't let New Orleans win the Super Bowl.
As far as I know all missions completed successfully.
The Vent (stop here if you aren't interested in my whining)
On the one hand, to be in the hospital all the time like Rachel is, takes a heavy toll on you. The sleep at night - in the good case if Liam is sleeping - keeps being interrupted because, well, it's a hospital. All kind of people coming in and out of the room. This traffic is intensified during the day. She needs to talk business with Drs and nurses all day long. Plus you have to keep an eye on Liam all this time. Sometimes to attend to her, sometimes to read her a book, sometimes to comfort her. I'm only experiencing it on the weekend; Rachel is at the hospital nearly 24 hours a day. I can't fathom how she does it.
On the other hand, it's sort of, hmm, how shall I put it? Comforting? Not sure. My point is that you're isolated from the outside. You can't go anywhere. You can't make your own schedule. You just have to go with the flow.
Sometimes I imagine the hospital to be sort of like a prison cell. You spend all your time in a room. You live from one meal to another. Well, I'm exaggerating, but you get the idea. The meals are the main thing that breaks all the hospital hoo-ha. No wonder we're getting fat.
Meanwhile, outside the prison I find that my life is pretty crazy. Between helping Meitav before and after school, my long drives to the office, coming back directly to the hospital, and arriving at home late - it's hectic. And of course then there's the usual things that we all do at home: small shopping, cleaning, folding laundry, fixing the printer, etc. etc. But worst of all is when I have to stuff the fridge and make breakfast for Meitav and myself. Sounds trivial, but I'm really challenged in this area. I always had Rachel feed me. While we have the generous community help, I still find it extremely challenging to run a household.
When I finally make it to the hospital, it's either after work or the nights on the weekends. In both cases I get to see Liam at her tired and not-feeling-well times. I'm missing all the good periods during the day.
Every 4 weeks it is my turn at work to be on call for a week. I can get alerts at any time of the day - around the clock. Naturally, if they call, I have to turn all my attention to work. That means that I can't help Rachel. But, just coming out of a long period of unemployment, the whining stops here.
If I was Bill Gates
(Well, first of all I would free the world of Windows...then..) I would surely quit work so I can relieve Rachel. On the other hand, maybe I wouldn't - just to keep the health insurance. In other words, it's sort of a catch-22. Back to prison. (I can't imagine how less fortunate families with seriously sick people, manage it.) Luckily, I'm not rich so I don't have this terrible dilemma.
The blog and I
Despite the light style of writing, don't believe everything you read. (The blog and I have daily arguments. I'm writing what's happening, but the blog publishes what HE wants.) It's a very stressful time for all of us (don't change this line, blog-ojevich). Naturally, the three of us argue and make up and then fight again and then hug. But at the end, the common goal and most of all, the LOVE, keep us tight together.
Finally, some news from the medical field
Have you heard that they found out that beer is good for your bones? For real!!! It's encouraging to learn that they finally found some symptoms that match the remedy I was using all along.
Saturday, February 6, 2010
Miniature plumbing
On Thursday Liam went through a little procedure: they replaced her J-tube with a new piece. It turned out that the first version never made it to its target - the intestines. The tube looped around in the stomach area. One theory os that this caused Liam the discomfort and vomiting on feeding attempts. So they fixed that. Now the J-tube really extends all the way to the intestines.
However, initial feeding attempts are still unsuccessful. One possibility is that Liam's body forgot how to absorb and process food and needs to re-learn these skills. I'm really hopeful this is the case.
Liam is somewhat uncomfortable at night. She needs "goodie" medication to help her sleep. Strangely, when the sun rises, she's quite again and catches on sleep with no pain control meds. Strange.
All the rest-of-her is/are pretty stable - not great, but stable: the urinary system, the kidneys, breathing, etc.
However, initial feeding attempts are still unsuccessful. One possibility is that Liam's body forgot how to absorb and process food and needs to re-learn these skills. I'm really hopeful this is the case.
Liam is somewhat uncomfortable at night. She needs "goodie" medication to help her sleep. Strangely, when the sun rises, she's quite again and catches on sleep with no pain control meds. Strange.
All the rest-of-her is/are pretty stable - not great, but stable: the urinary system, the kidneys, breathing, etc.
Wednesday, February 3, 2010
A new test?
I've been through some tough times through the years: childhood and school were a struggle; the army was extremely tough; I suffered from a serious injury right after the army (it took me several years to recover - physically and emotionally. A lot lingers until today); many health issues since; moving to the US, away from my family and my country; going to school here, in a new language; Liam's birth and everything that followed - until now; the very difficult loss of Mom. There were probably a few things I forgot. I always considered every hurdle as the biggest challenge I ever faced. Little I knew that there's a next one around the corner and that IT is the biggest. Yet, I always came out on top. Well, this now is by f a r
the biggest challenge of them all. What makes it so difficult that this time it's not about me and not in my hands. It's Liam.
I think all this experience made me a better man (though I completely understand if others will argue with this statement :-) I learned to be stronger, more patient, more understanding, more mature (here's another argument). But, what does any of that matter if Liam won't be with me?
It is strange to write theses words as if this is the end. It is not [yet]. Everybody is working so hard to try and improve Liam's health. But the thoughts are there. It's difficult not to see the big picture: that her health has deteriorated dramatically in the last few months and there are no signs [yet] of recovery. So once again, nobody's giving up, but the damn thoughts are infiltrating.
the biggest challenge of them all. What makes it so difficult that this time it's not about me and not in my hands. It's Liam.
I think all this experience made me a better man (though I completely understand if others will argue with this statement :-) I learned to be stronger, more patient, more understanding, more mature (here's another argument). But, what does any of that matter if Liam won't be with me?
It is strange to write theses words as if this is the end. It is not [yet]. Everybody is working so hard to try and improve Liam's health. But the thoughts are there. It's difficult not to see the big picture: that her health has deteriorated dramatically in the last few months and there are no signs [yet] of recovery. So once again, nobody's giving up, but the damn thoughts are infiltrating.
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