Nebraska Update

For some strange reason, I’m up early. After being on the go and out of town for over a week now, I assumed I’d be sleeping in (well, at least until the children awoke at 7:00), but here it is 5:30 and though I have a slight headache and pressure around my eye sockets, I’m wide awake. I’m hoping the headache doesn’t mean I’m coming down with something.

I’ve made my first batch of Oral Rehydration Solution, added some Crystal Light, and now I’m waiting for my drink to cool in the freezer, since apparently, we’re out of ice. I’ll get to the ORS in a few minutes.

First things first. I had a wonderful time at the beach with my 3 girlfriends. It just so happened that our trip fell over the one-year anniversary of losing my baby and my small intestine. What better way, I thought, to celebrate life than with three of the friends who’ve been an instrumental part of my life for the past almost 10 years? Some very kind friends of one of my friends allowed us to stay in their beautiful beach condo down in Hilton Head.

We girls laughed like I haven’t laughed in a long time. We sang old songs, played games, cooked dinner, walked on the beach, laid out under umbrellas (for it was stinkin’ hot), and just relaxed. I think my favorite part was getting to spend time, one-on-one, with each of them, sharing our hearts about whatever the miles made it hard to say.

(Me, Janessa, Sarah, and Beverly)

As soon as I flew back in on Sunday afternoon, Jeff and I picked up our rental car and headed home to pack it up, hitting the road with the children that afternoon. We drove until about 9:30 and stayed in a hotel, getting up early to finish the rest of the drive. Between DFW and Nebraska, there ain’t much to look at, let me tell you. We were a little irritated that I-35, in Kansas, was a toll road, but the land is actually quite pretty, though sparse. Lots of cattle farms, gentle rolling hills, and an occasional pond dot the landscape. Once you get closer to Nebraska, it turns to farmland. Corn and soybeans, and once in Nebraska, it was corn as far as the eye could see, just miles and miles of it.

All of the roads we needed to take had been re-opened since there’d been major flooding up that way. We could still see a few houses sitting in water, and the water was nearly to the bridge we crossed over…crazy how high it was. We saw a few crops totally destroyed and my heart went out to the farmers who wouldn’t be able to recover any of it.

We got into Omaha and finally found our way to our host home. Natalie and Kyle Spontak are friends of my brother, Alex, and his wife, Julie. They graciously offered to let our entire family (having never met us) stay with them while I was doing all of my testing at the Univ. of Nebraska Medical Center. They are the sweetest couple, and we now count them among our close friends.

Tuesday was a long day of testing for me, so we decided Jeff should take the children to the zoo. He rented a wagon and wore himself out carting them around in the heat. Nebraska wasn’t much cooler than Texas, that’s for sure. They all came to the hospital on Wednesday, since I just had one long test, the small bowel series. I thought I was going to get away from having to drink “contrast” since my Barium Enema was cancelled (the WORST test ever that gave me diarrhea until 1 a.m. last year). I’d forgotten that the small bowel series was similar, except that I didn’t get that horrible camera stuffed up my anal hole, thank goodness.

The doctor who led the testing put me on the table and just had me take little sips of the contrast which was very thoughtful of her, and true to form, I scrunched my face like a child and grimaced most awfully every sip, but I did it. Horrible, that contrast stuff, like a thicker version of milk o’ magnesia or something equally awful.

Anyway, after that test, we decided to head home, and though we’d gotten a late start, we made it all the way. We missed a phone call telling of the results of that last test, and I had to call yesterday for the update…so, together with the meeting I had with the clinic team, here’s the complete update.

• There has been some dilation in my small intestine, which means it has grown a tiny bit. After we’ve exhausted every possible rehab intervention, there’s talk about a ‘step’ surgery (and I can’t remember the name) which would basically slice the intestine and re-attach length-wise, which would give me a tiny bit more length. They want to wait as long as possible before this happens to give my bowel a chance to grow a little more, or in my case, I believe, to give God a chance to continue to work his miracle.
  
  
• They ‘may’ put me on Zorbtive again, the growth hormone, but no decision has been made. Truthfully, I’m not looking forward to that, since it made me so nauseated, but I’ll do whatever I’m told to give my body a chance to work even better.
  
  
• I now take 12 Imodium a day and the goal is to get me to “stool” (such a silly word) 1-2 times a day like everyone else. Wouldn’t that be GREAT?!?
  
  
• Dehydration has continued to be a problem for me, so I’ve got to order the Oral Rehydration Salts I mentioned above and make my own adult Pedialyte. I’m supposed to drink a liter a day, and they told me to get a camel pack and wear it all the time. I feel a little overwhelmed with the liter because I never drink that much, but the more hydrated I can stay, the less diarrhea (and vomiting) I’ll have. So, will I do it? Yes.
  
  
• We talked about exercise, something I miss terribly, but being out in the Texas heat is off-limits (thank goodness), so I’ve been given the okay to swim. That was the best news ever! I use a very sticky patch to cover my line when I shower, called an Aqua Guard, and as long as everything is covered, I was told it should last an hour, long enough for me to swim. I don’t particularly like doing laps, but I feel weak and jiggly, and I want to feel fit and healthy, even if I’m not.
  
  
• One of the last things covered was the line itself. The next time I get an infection and have to be hospitalized, I’m to ask for an ethanol-lock compatible line because they’d like to start giving me ethanol through my line to kill bacteria and keep infections at bay. Didn’t think too much about it until we stopped to fill up our gas tank and I see “Warning. Contains ethanol.”
  
  
• They’d like to try and wean me down off of TPN (oh yeah), but that will require getting the hydration issues resolved and the poop lessened, so maybe soon I’ll be down to 5 days a week!
  
  
• And lastly, I think, we talked about some recent bloating/gas I’ve been dealing with, which my team believes is a direct result of bacteria in my small bowel itself, so there’s talk about trying me on cyclical antibiotics to kill that stuff, however, most of this, excepting the Imodium, won’t occur right away. They don’t want to make too many changes at once.
  
  
• Basically, I didn’t get any bad news (which is fantastic news); my stool has changed somewhat; it’s thicker and often macaroni-shaped, which was good news for them…the only people who, besides me and those potty-training mommies, who get excited about poop! There is a little concern over the fattiness of my liver and potential gall stone issues (results of the TPN), but they’re simply going to keep their eyes on all that and I’m not to worry about it yet.
  
  
• All in all, I was very pleased with this clinic visit and the fact that I’m doing well enough they only need to see me once a year, with regular phone calls and email check-ups. Thank goodness for modern technology!

Keep praying, friends. God has heard your prayers and there’s a little activity down there, but in order for me to not have to transplant and sustain myself nutritionally, I need more length!! So, please, join with me as we ask for the not-so-impossible.