More tubes, more tests, less answers.

The long awaited GI appointment update at last.

I actually had MOST of this typed up a few days ago, and then my blog editor ate it. Talk about frustration.

Although sometimes that is maybe a good thing, cause it might help me ramble less….

on second thought, no, probably nothing can help that.

Anyways.

To attempt to clarify this appointment – it was not because we had been in the hospital. It just so happened to be scheduled for a few days after we left the hospital. We typically see the GI every 3 months for regular followups and to make sure that everything is hunky-dory with kendall’s gut (which it rarely is, but we have learned to have a relaxed definition of “hunky dory”, so it’s copasetic.) Back in the week before Christmas, when Kendall started doing more weird Kendall stuff, and we started upping our home interventions, and then called him for some more support, he moved her appointment up from the last week of January to the first week, and gave us the new med to “buy us the holidays at least. we hope.” Obviously, it bought us christmas, but not new year’s. Close though.

so – it wasn’t because of anything that did or didn’t happen in the hospital, but it WAS because he knew something was going more wrong than typical. Make sense?

So – at the appointment was K, the nurse who deals with my frantic GI calls, M, the nurse from complex care who helps coordinate all of kendall’s specialists, Dr. N, the GI, and me and kendall.  K the nurse takes all of our info first, relays it to Dr. N, who then usually comes in and says, ok, address this issue with this fix, this one with that, add this, try this, see you in three months. It sounds like a not good system, but it actually really works well for us. I am obviously condensing a lot of talking. So this time he comes in and he is obviously up to speed on the fact that Kendall is getting the port put in, has spent 5 days in the hospital the past week, and that I am fed up with not having any help or answers.

Somehow he gets all worked up over “this output situation”. I don’t even remember how it came up. But it really was bugging him that Kendall is putting out so much more bile. Now if you have a kid with special needs whose gut is not working optimally, you know the vast discussions that can be had on “bile” vs. “stomach acid”, normal vs. not normal, yellow vs. green, etc. So he wanted to get into a discussion on what was coming out and I opened up kendall’s backpack and showed him, and he did his deep thinking face rubbing thing.

Then he said that right now, our best option is definitely putting the port in, but that we would most likely need to talk about doing a surgical J soon, and that it was definitely time to do the motility testing. Our complex care nurse is nodding along like she totally agrees, Kendall is eating baby soap out of her diaper bag, and i am like “homey come again???” How did we get from “I think she needs a different formula” (which was my big question for this appt) to “she needs more surgery and more painful testing to confirm that things have gotten much worse for her gut”???

i was seriously baffled. Dumbfounded even. I felt like I had missed a major part of the conversation. I mean, I know things haven’t been super-fine in the gut department as of late, but how do we know its not her wonky kidneys or another metabolic process out of whack or heck, even just autonomic dysfunction at play here? Obviously none of these things are great answers. None of them are even really just good answers. But something about his jump to more surgery, and the manometry testing just seemed very defeatist to me. His whole demeanor changed, and I was left wondering how things got this bad this quick.

Now- as to what all of this really MEANS on a practical level –

no, we are not doing another surgery anytime soon. I will need some REALLY strong evidence that a surgical J-tube is going to be the absolute best option for Kendall before Ben and I consent to something like this.  Here is a link that kind of describes the separate J-tube surgery (which I don’t really understand myself very well). And its not that I think the surgery itself is a bad thing. I know it has helped out more than a few of our mito friends whose tummies have needed the help. For instance, our awesome model Samuel here, sporting the newest look in chronic tummy issues – he is showing us his new port (its the little round bump near his left shoulder, just past midline), his G-tube on top and his separate J-tube underneath that. It’s just that, in my mind, right now, its most definitely a step backwards for Kendall. It is to admit defeat in a small way, more so than doing the G-J was in the first place.  (aNd just to clarify, this is a picture of how her tube looks NOW – not the separate J) I know that J-feeds have made a WORLD of difference to Kendall and were one of the best decisions we ever made for her. And who knows, i may feel that way about this surgery some day too. but it just seems so young, too early to be having talks like this. It was just all a little too REAL. And it sucked.

In Dr. N’s opinion, we are tabling the J-tube surgery discussion till we get the manometry (motility) testing results back; in my opinion we are tabling it until further notice from me, which might be never. The manometry testing is a controversial thing among kids with gut issues. As Dr. N put it to us “We might catch Kendall on a great day, and get no answers from this test about what her gut is doing. Or, we do get answers from this test, and they are not the kind of answers we want to hear. But at least they will help us know what other directions we can look to get her help.”

so let me get this straight.

you want to put kendall through a rather painful testing procedure in order to either disregard any “good” results we might get, because we assume that they aren’t a true reflection of her gut function, or, we will get devastating news from this painful test that might mean we have to make hard decisions about her future care? Yeah, sign us RIGHT up for that. Cause that sounds like a GREAT way to spend a few days and a couple G’s worth of money. Sounds like Disney on crack right there – every kid’s dream come true!!!

Unfortunately, I think he is going forward with the manometry testing scheduling at least – which takes a few months to get into at our hospital. There are apparently only a handful of places in the US that even do this kind of testing on kids, and luckily, CHW is one of them. i mean, luckily if you are excited about this kind of thing. Which I am not. I was not excited about ANY of that appointment. I am not excited about ANY of the news or issues we have received or are dealing with for Kendall lately.

When Dr. B asked me the morning after we were transferred up there to CHW if I felt like Kendall has gotten better, rollercoastered, or gotten worse in the past 6 months, it really made me stop and think. I wanted to say that she has made great strides over the past six months. i wanted to tell him that we were all done being sick and yank all the tubes out and take back the formula and the pumps and the machines and the wires and give me back my healthy baby now please. I wanted him to be as excited as I was about the fact that she can walk now, and she says a few more words than she did 6 months ago, and that I don’t worry that she will stop breathing any given nite anymore. And I wanted to point out that she has only had 1 pneumonia in the past 6 months, (except then we’d have to forget the scary RSV issues she also just had a few weeks ago). and I wanted him to see that of COURSE I want to say that my baby is getting better every day because in my eyes she is. She’s my baby. I will NEVER give up hope for her. i will NEVER stop rejoicing in the inchstones, or the major milestones, no matter how delayed they are. I will probably NEVER accept that she has a disease that could continue to zap her organs of precious life-giving energy. Because I am her mommy and I just can’t give voice to those words. My head can kind of form the words from a semantic standpoint, but my heart never will.

But I looked up at Dr. B that cold morning with tears in my eyes and I told him that I just wanted her to be fixed. I just want her to be better. And I still want that. And I always will.

Because the bottom line is, right now, her body is doing it’s own weird little thing. I am not going to say things are getting worse because I just don’t have solid proof of that right now. I know that we are dealing with a lot more issues now than we were say, 3-4 months ago, especially with regard to her gut. But  that does not mean “getting worse” necessarily. It just means we need to learn to support her a little better, a little differently than we are doing now. Hopefully this port surgery on the 18th will be a large part of that. Hopefully being able to keep her all hydrated up in a way that her gut isn’t able to do right now will give her tummy the break it needs to start working on its own again. Hopefully we are able to find the things and ways of support that she needs right now.

I hope…

I never stop hoping.

I hold on to hope because I believe in and know the author of all Hope. And I know He is holding my baby girl in His hands, and that He has all the answers that our doctors are so frantically searching for. He knows whether Kendall will need the surgery and He knows what the results of her testing will be and He knows the plans He has made for her.

So – even though I am writing this a week after the fact, it still doesn’t quite take all the sting out of that appointment. GI appointments are rarely good around here. But that’s ok. Because today Kendall is laughing. yesterday was rough, but today is good. And I hold on to the good days, and try to forget the bad ones.

Because really, that’s all any of us do.

Thanks for checking in on us~

 

terra