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Karen's Musings
Random Rambling
Catching Up and Diving Back In
I haven't posted to Live Journal since June of 2011 - when we lost Julian all together and it looked like we would never see him again.  I'd like to get back to posting, and I've tried several times, but after such a long lapse it always feels like there's too much to catch up on.  So I'm just going to dive right back in with some salient points.

The Kids
The kids are doing great.  Tobie, believe it or not, just turned 2 years old, but she thinks she's a 4 1/2 year old because everyone else is, so why shouldn't she be?  The triplets, as you may have noted, are 4 1/2 and vary between awesome and incredibly annoying.  The girls fight with each other all the freaking time, but they're so cute and lovable that it's hard to hold that against them.  Sam's doing well and his recent IEP meeting revealed that he's doing well enough to move on to an integrated classroom next year (part typically developing kids, part special needs).  We have seen Julian a few times, but his mother has been refusing to return my calls and emails recently, so we haven't seen him in several months.  It's not what we'd like, but my main focus has to be on the children who are IN my house right now.

Seth lost his job at the end of December.  He got a temporary job in January for 13 weeks, but that's over now.  Although he's looked for a permanent job locally, he's been unable to find anything so far.  So, he's accepted a 6 week position in California starting this Friday.  He leaves tomorrow.  He'll be working 6 days a week, twelve hours a day, so he won't be able to come home while he's there and my health isn't good enough to go out and visit him while he's out there (more on that later).  So we'll miss him and he's going to be working his tail off, so it's going to suck all around. But the money won't be bad, so we can't entirely complain.  

My Health
My health has been pretty terrible since Tobie was born.  It hasn't been getting better - it's been getting worse.  This year, I've had three hospitalizations, gotten a G-J feeding tube (which has been replaced twice) and a central line, become septic and almost died, gotten a massive clot from my central line, gotten a new central line, been told by the third best gastroenterology clinic in the country (Johns Hopkins) that I should probably look into other clinics in the country because there's not much else they can do for me, and lost about 40 pounds. Now, I needed to lose those 40 pounds (and need to lose another 40), but not eating isn't the way to lose weight.  But, pretty much whatever I eat the conventional way (via mouth), I throw up.  (Not on purpose - believe me, I'm not a fan of throwing up!).  I've been on a medical leave of absence from work since March 2nd and am slated to be out through July 1st at least (probably longer).  I have little energy for anything most days and spend a lot of time in pain and nauseated.  There's really no end in sight.  My options right now are:  surgery to get a gastric neurostimulator (the surgeon at Hopkins won't do it because he's an ass, which is why my GI doc has suggested I look elsewhere in the country), surgery to have my stomach removed (which I feel is a little drastic at age 36, but is under serious consideration), surgery for a different kind of J-tube (also under serious consideration, but on hold because I was recently septic), or just putting up with the status quo.    I have an appointment at the Cleveland Clinic (#2 Gastroenterology Clinic in the country) in September and I've asked Mayo (#1 in the country) to review my records to see if they'll offer me an appointment.  I'm also trying to get an appointment at Mass General.  Hopefully something will come through.

And that's about it.  More to come, I'm sure, but that's enough for a catch-up post.  I'll leave with a new picture of us:

28 comments or Leave a comment
cahwyguy From: cahwyguy Date: May 23rd, 2012 08:18 pm (UTC) (Link)
Thanks for the update. I just love that picture.
estherchaya From: estherchaya Date: May 23rd, 2012 09:36 pm (UTC) (Link)
I do too. We got some great ones that day!
either_or From: either_or Date: May 23rd, 2012 08:27 pm (UTC) (Link)
i've been following your posts on FB. i am glad the kids are well and cannot belive how fast they grow! sad abour julian, though...</p>

this might be a ridiculous question, but is there such a thing as a stomach transplant?

estherchaya From: estherchaya Date: May 23rd, 2012 09:37 pm (UTC) (Link)
I don't know if there's such a thing as a stomach transplant. I think not, since you can live without one. I've been wondering the same thing, to be honest. But since you can live without it, I think the risk of being on anti-rejection drugs outweighs the inconvenience of being without a stomach.
eyelid From: eyelid Date: May 23rd, 2012 09:02 pm (UTC) (Link)
wow, has it really been that long?? crazy.

triplets are so old! I still think of them as one-year-olds.

re: your health: I was hoping for better news... do they actually know what's wrong yet?
yeishlitikvah From: yeishlitikvah Date: May 23rd, 2012 09:09 pm (UTC) (Link)
I'm glad you posted an update. While I keep up with the ongoings on fb, there is something so lovely about thought out posts that seems to be the dying art of lj.
estherchaya From: estherchaya Date: May 23rd, 2012 09:38 pm (UTC) (Link)
I know. I miss LJ. I just haven't had the time or energy for it.
From: morganminstrel Date: May 23rd, 2012 10:16 pm (UTC) (Link)

Another crazy question

Would a gastric bypass (RNY) help you? Or is that the kind of operation you were talking about?
estherchaya From: estherchaya Date: May 23rd, 2012 11:21 pm (UTC) (Link)

Re: Another crazy question

Columbia has had some small-scale success with sleeve gastrectomy for gastroparesis. I know a few folks with gastroparesis who've had RNY bypass, but it's more rare. A total gastrectomy or a sleeve gastrectomy is more common, though I'm not sure why. I'm not comfortable committing to a total gastrectomy at age 36. But I'm very tempted by the possibility of a sleeve gastrectomy, to be honest. At least that preserves a portion of my stomach and enables me to keep some stomach function. (Not that I have much stomach function right now...).
childlight From: childlight Date: May 23rd, 2012 10:25 pm (UTC) (Link)
Wow I can not believe how much the kids have grown. I am glad you updated.
estherchaya From: estherchaya Date: May 23rd, 2012 11:18 pm (UTC) (Link)
I know - they're little people now!
magid From: magid Date: May 23rd, 2012 10:51 pm (UTC) (Link)
Of course Tobie's a 4.5-year-old: she's got the polka-dotted dress to prove it :-).

I'm glad everyone else's health is good, and hope that some doctor out there will figure out how to help you back to a more normal life. (You can live without a stomach?! I never knew that.)

And I hope that Seth finds permanent work near home soon after his CA stint ends.
estherchaya From: estherchaya Date: May 23rd, 2012 11:26 pm (UTC) (Link)
Good point on the polka dotted dress. The best part is, in two years, she'll have two more polka dotted dresses! :)

Yep, you can live without a stomach. Admittedly, you have to make severe dietary changes if you have a total gastrectomy. Nearly everyone who has a gastrectomy becomes totally lactose intolerant. And they can frequently get what's called "dumping syndrome" (rapid heart rate, nausea, abdominal pain, dizziness, shaking, low blood sugar, etc. after eating because food moves too rapidly into the small intestine). Also, you typically can't process sugar the same way anymore, and highly fibrous foods become no-no's. But since I'm currently restricted to pretty much no food at all right now, that would all still be a big improvement over nothing. It's still a commitment I'm not willing to make until I've exhausted all other options.
cahwyguy From: cahwyguy Date: May 24th, 2012 01:35 am (UTC) (Link)
Sounds very similar to what one deals with after a gastric bypass (the good ones, the Roux types). My wife had one about a year and a half ago.
estherchaya From: estherchaya Date: May 24th, 2012 02:23 am (UTC) (Link)
Yes, very similar, but more extreme in the case of a total gastrectomy, because in that case there's NO portion of the stomach left. I didn't realize your wife had gastric bypass. How's it working out for her?
cahwyguy From: cahwyguy Date: May 24th, 2012 03:14 am (UTC) (Link)
Very good. Do you want me to have her call you so you can share experiences? I think I still have your numbers. If so, let me know when would be good.
estherchaya From: estherchaya Date: May 24th, 2012 03:26 am (UTC) (Link)
Maybe. Not yet. I'm trying to avoid a gastrectomy if possible... It seems drastic and extreme for a 36 year old. RNY bypass has much less success for gastroparesis than gastrectomy. Regardless, I want to exhaust other options first. Sigh.
mortuus From: mortuus Date: May 23rd, 2012 11:47 pm (UTC) (Link)
Welcome back to LJ! I absolutely adore that photo. So much personality!
estherchaya From: estherchaya Date: May 24th, 2012 04:32 pm (UTC) (Link)
I love it, too. It was taken in a parking garage, of all place, because it was raining that day, so our plans to go to the park did not work out! But I LOVED the industrial look of the parking garage in the finished photos! :)
indigodove From: indigodove Date: May 24th, 2012 12:29 am (UTC) (Link)
Beautiful photo!

I'm glad to hear the kids are doing well, continue to be praying for all of you about the bad stuff. I hope these 6 weeks fly by.

estherchaya From: estherchaya Date: May 24th, 2012 04:32 pm (UTC) (Link)
Thanks for your thoughts and prayers. We hope the six weeks fly by too! It's not THAT long in the grand scheme of things, but I know that the kids are going to be asking a LOT about when Seth is coming home!
arosoff From: arosoff Date: May 24th, 2012 02:23 am (UTC) (Link)
I saw that photo on FB. I refuse to believe the triplets are that old. REFUSE. Much less Tobie being 2. </p>

Facebook is great, but I also love reading longer updates.

arosoff From: arosoff Date: May 24th, 2012 02:45 am (UTC) (Link)
(of course, I love the photo, that sounds unintentionally snotty, like "I saw THAT before." whoops)
estherchaya From: estherchaya Date: May 24th, 2012 04:36 pm (UTC) (Link)
I didn't take that as snotty in the least bit. I promise!
estherchaya From: estherchaya Date: May 24th, 2012 04:33 pm (UTC) (Link)
I can't believe we've made it through 4 1/2 years of triplet parenthood! The thing about FB is that I can't go back and read about my life "back then"... it doesn't archive my life the same way. So I prefer LJ in this respect. It's just been a matter of time and energy.
real_bethy From: real_bethy Date: May 24th, 2012 02:45 am (UTC) (Link)
I'm so glad that you posted! I've missed hearing from you!

I had no idea that it was possible to live without a stomach! I really, really hope it doesn't come to that. I am keeping you in my prayers and I hope that you are feeling better soon. I can't believe how much weight you have lost. You do look fantastic (you always look fantastic, weight has nothing to do with it) but I worry because I know that you are losing weight from not being able to eat and that isn't fun.

I refuse to believe that your kids are getting so big! I feel like just yesterday, you were posting to let us all know that you were expecting triplets...never mind the miracle that is Tobie! Julian is also never far from my thoughts. I know your arms must be hungry for him.

A thousand blessings upon your family! I hope Seth finds stable work soon and that you all have one less thing to worry about. :)
estherchaya From: estherchaya Date: May 24th, 2012 04:36 pm (UTC) (Link)
Yep, absolutely possible to live without a stomach. You have to change the way you eat significantly, but you really don't need your stomach to survive in the same way you need, say, a liver or a kidney or a heart.

My kids have turned into little people - it's astounding, really. I'm in awe of it. :)

Thank you for your thoughts and prayers - they are much appreciated.
jeannegrrl From: jeannegrrl Date: May 29th, 2012 01:53 am (UTC) (Link)
Really good to see an update Karen. Even if the whole stomach mess were *not* something you're dealing with, I'd absolutely feel for you re: single-parenting for 6 weeks. But with the gasterpainintheassisis on top of it all... just, OY! I'm glad you'll have some scheduled help. Doesn't make things easy, but maybe a bit easier. If you're up for it, I'd love to come visit. If it's in mid-June, I'd have to being my 4 with me. If that would be too overwhelming, I could find some time while everyone's in camp....
28 comments or Leave a comment