ChezPerky

I haven’t posted  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
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:

I now have documented proof that I have a brain!

MRI today went fine and I came away with a CD of the images, all 344 of them.  Unfortunately, I didn’t go to medical school so I don’t know what any of them mean, but it IS clear that there’s a brain in there.  Don’t know when I’ll get the radiologist’s report.  I’m following up with the neuro-ophthalmologist on the 15th, but I may need to call him before that, because I feel like my peripheral vision is shrinking.  Ugh.One day at a time, right?

The appointment with Dr. S at JHU was definitely worth the wait.  She had a lot of good thoughts for moving forward:

– First, she said not to lose hope that the gastroparesis may just resolve on its own over time with no rhyme or reason to it.

– She thinks some of the nausea is related to the gastroparesis and some may be related to hormone wackiness.  I have polycystic ovary syndrome (PCOS), which can wreak havoc on hormonal balance.  She’d like me to talk to my OB/GYN about getting back on metformin, which I’d taken before I was pregnant (PCOS is linked with insulin resistance, so metformin tends to help reduce the symptoms and restore hormone balance).  She’s hoping if I get that under control that it will help relieve the nausea.  She also noted that the PCOS is probably the reason I’m not losing weight despite barely eating.

– She said that with most motility disorders your gut is essentially “confused”.  Throwing up for 8 months while I was pregnant with Tobie probably started a vicious cycle.  She said your gut kind of gets stuck in a pattern.  The more you throw up, she said, the  more you throw up.  To that end, she wants to see if she can get me out of this pattern for now.  She’s suggested that I revert back to a completely liquid diet.  She said to try to drink 3-4 ounces of ensure/boost/carnation instant breakfast every 3-4 hours.  Even if I don’t like it, I should just think of it as taking medicine and force it down.    Fair enough.  While I wasn’t able to keep Boost down when I tried it before, I got some Carnation Instant Breakfast and Ensure and both are easier to stomach.

– Even though the botox wasn’t a miracle cure, the fact that it did any good was a great sign.  She said with the botox injections, if you hit the exact right spot, it can cure a person forever.  If you hit *near* the right spot, a patient can have relief for up to 3-4 months.  Unfortunately, there’s no map, of course, so there’s no way to know if you’ve hit the right spot until you do.  She recommends continuing the botox injections every 3 months.  I had my last botox injections in October, so it’s about time to try again.  She said not to add back in solid food until after trying the botox again.

– She gave me a referral to Dr. E who does their gastric pacer surgeries.  She said that by meeting with him now, we open that door so that if the other things don’t work, we don’t have to waste time waiting around for a consult with Dr. E.

– She’s ordered a 4 hour gastric emptying study with solid & liquid combined.  That’s scheduled for 2/25/2011.  She also ordered UGI/SB xray series.  That is scheduled for 1/19/2011.  She said both will give a better idea of where things stand now, but are also both typically prerequisites for a consult with Dr. Eckhauser, so it’s worth getting them out of the way now.

– She suggested changing my exercise routine to add in 3 10 minute periods of continuous walking.  She said the idea is to encourage gastric emptying any way we can, and gravity may help us out here.  This should be relatively easy to incorporate into my routine.

– She said to empty the Nexium capsules into applesauce and eat them that way.  She’s concerned that the Nexium could just be sitting in my stomach and not doing me as much good as it could be.

– Interestingly, she didn’t suggest that the narcotics are the culprit.  She asked if I really needed them: “would you be down for the count without them?”  Yes.  Then I should keep taking them, she said.    She just said to stop taking the narcotics and the domperidone (if possible) for 3-7 days before the gastric emptying study.  If I have to take the domperidone in order to guarantee that I can keep down the food for the study, then so be it, but it would be preferable to get it out of my system first.

Overall, it was a very positive appointment.  I admit having been skeptical that there was really any point to the consult – and I really expected her to say that I had exhausted my non-surgical options, but it was nice to hear that she had some simple strategies  to try and improve my quality of life in the meantime, even if the surgical options turned out to be the right answer in the long run.

I’ll be following up with her on March 3rd once all the other testing is complete.

I do my best to (almost) never curse in my blog.  Not because I don’t have a mouth like a sailor, but because there’s something so permanent about it.  But seriously, WTF?

Our heat died last week on the day we got a few inches of snow (not a lot, but still, it was measurable, so that’s something and the point is the timing is lousy).  It’s fixed now, but now we need a new water heater… about $1100 minimum we’re told.  I was ready to fly to Florida today and Seth landed in the hospital with mysterious abdominal pain yesterday (he’s still there, but hopefully coming home today).  Tobie has a fever.

WHEN, oh WHEN will the universe give our house a BREAK?  I am so tired of this.  It’s not this year.  It was last year too.  Will 2011 be ANY better?????