The weather’s bound to change!
Or the situation as the case may be.
Sure enough, as soon as I hit publish on my last whiney post, in walks Ben, who drove for almost 4 hours (round trip) to come be with me and kendall when he got my text about our craptapular morning. that helped immensely. The next good thing was that a surgeon came to talk to us. I can’t really do all the details of that conversation justice here, but the summation is that for the first time in a long time i felt like someone was LISTENING to me talk about Kendall’s issues, and was actually filtering this info through his medical degree and coming up with a GOOD PLAN to combat some of what we are dealing with.
The only problem is – he has to go through the GI who is attending Kendall’s case here. Who is very…conservative to say the least. But he comes in a few minutes after surgeon left, says he talked to surgeon and here’s our plan:
Tomorrow she will have her flexible sigmoidoscopy AND an EGD (esophahogastroduodonemy) study. Basically a camera will go from the bottom up and a camera will go from the top down, and get a mostly full picture at what’s going on with Kendall’s GI tract. Some biopsies will be taken from these scopes, and a full report on the condition of her tract will take a few weeks, but right now we are trying to rule out a few acute (possibly needing emergency action) issues (again this is all as best as i understand it from how it was explained to me). Basically we are looking to rule out Hirschprungs Disease ( a condition where part of her lower colon is either missing the correct nerve cells, or completely atrophied to the point of not working correctly), or a malrotation or intusussepcion (blockage) of the upper intestines. If any of these things are seen, my knowledge is that they will schedule corrective surgery relatively quickly.
If those things are able to be ruled out, then we start moving towards Procedure B. (procedure sounds less scary than surgery). This will involve the placing of a G-tube for permanent help with supplementing her feeds, a Nissen fundoplication to reduce her reflux/aspiration (this involves wrapping the lower part of her esophagus around her stomach so that she can no longer burp, puke, or reflux), taking deeper intestinal biopsies and finally doing a muscle biopsy of her thigh muscle.
Right now, there is a good chance that if all goes well tomorrow afternoon, she will stay here over the weekend and have procedure B on Monday, and we could possibly be home by Tuesday. All of Mondays procedures should be laparoscopic, so lots less invasion.
As scary as some of it sounds, I walked away from that meeting with the surgeon almost GIDDY with relief that i think we’re finally being heard, and someone finally has a plan in place to deal with some of these bad cycles kendall keeps going through.
so that’s where we are tonite.
they took her back to put her IV in already so that she isn’t such a hard stick in the morning after we’ve had to turn her feeds off and she starts to dehydrate a little again. seeing her with the IV back in kind of made it all seem real. like we’re really and finally moving FORWARD toward answers for her.
she had a great day today, finally slept pretty restfully for the first time in a long time.
so see? things really can change around here with the wind.
thanks for the prayers and thoughts after this mornings craziness.
I am sure that i will be updating to distract myself tomorrow as we wait for Procedure A to begin. It starts at 1 pm supposedly…I wo’nt be shocked if we are still waiting to get taken back at 2. But you never know, maybe it will actually be on time tomorrow!
peace to you –