That’s what we’ve decided to rename it here at our abode.
I don’t even know how to go back and begin trying to start at the beginning of the medical saga that is our lives – so we’ll just kind of jump right in!
I think I had posted a while back about Karissa’s issues. Add to that now Kaylen and as of last nite, ME TOOOOO!!!!!
So – a quick recap/update/intro on what’s going on here so you can keep up when I am a completely nonsensical mess in January. K?
I think in my last post referencing K2, I discussed her having had a spina bifida defect at birth and a few of the complications that we have seen over the years from that. And I also talked about her general issues/decline over the better part of the past year – things like cognitive issues in school, a noticeable decrease in her energy levels, and just a basic blah-ness to her. If you’ve seen her recently you’ve also noticed the addition of some new hardware to her – she has had a pretty shocking and quick decline in her vision since last spring. Of course this is a rather “common” occurrence for many kids – to need glasses at around this age. Even the doctor was rather concerned though about how quickly it went SO far downhill – and I was shocked that Karissa had never once verbalized that things were “fuzzy” or in any way hard to see! Getting the glasses though was a huge help to a lot of the issues we had become very concerned about (cognitive issues at school, behavioral outbursts/super-emotional, headaches, etc). Unfortunately, the glasses didn’t fix everything – as she was still dealing with a lot of urinary and bowel issues – all of which she had very badly right before Kendall was born also, but were just pushed to the backburner when it seemed like everything else was crashing in.
So when we finally got to talk with the pediatrician about all of our concerns, she agreed that it was time to talk to a neurologist who deals with spina bifida, and to order an MRI to look for a condition called “Tethered Cord Syndrome”. Basically, in a healthy spine, the spinal cord is able to move freely within the vertebral space, and this is part of what allows us all our flexibility and ability to deal with a variety of injuries that seem like they should otherwise be debilitating. In kids with a spina bifida defect like Karissa’s, where surgeons often DON’T go in and correct any abnormalities like happens with the more severe and open forms of spina bifida, the spinal cord unknowingly can connect or “tether” to the backbone via a variety of mechanisms (bony or fatty growths usually), and the spinal cord is no longer able to float freely in that space. As the child with tethered cord grows taller and becomes more active, more problems from having a tethered spinal cord start to arise. Understandably, the more stress and strain that is put on a cord not designed to stretch like a rubber band, the more problems will start to pop up and get worse. And that’s where we are at with Karissa.
She may not have a tethered cord. She could just be having a really really rough year and having it show up in a lot of different areas in a lot of different ways. I mean, admittedly, our lives are far from “normal”, and it has only been in the past couple months that we have seen ANY kind of “stability” for the first time in years! I go back and forth a lot with thinking she definitely has a tethered cord one minute, and then the next thinking its all just ridiculous and over-reactive. But watching her change and withdraw more over the past few months – I know its the right thing to do, to at least get it checked out.
When the nurse called to do the pre-procedure questionnaire for the originally scheduled MRI (which we had scheduled at an outpatient center), she said that due to Karissa’s snoring (she sounds like a train most nites!) and the fact that Karissa is needing near daily ibuprofen to help control her pain, that we would need to reschedule the procedure at the main childrens hospital (the one actually here in chicago! yay!), and she would need to be put under GA (general anesthesia) and be monitored for a while afterwards. So now the MRI is scheduled for January 9th, with followup with the neuro on January 12th.
From what we understand right now (based on conversations with the pediatrician and dr. google only) is that if there IS evidence of tethered cord, a decision would probably be made by neurology/neurosurgery to “de-tether” the cord in order to protect some of her organs from further or worsening nerve damage. I really have no idea how soon they would recommend surgery or IF they will recommend surgery. We know from X-rays at her chiropractor’s office that there has been a definite change in the lower curve of her spine – where it should bump towards her stomach like an S – hers has become much more C like, and bumps out towards her back. It’s hard to put into words – but I can say that all of the above, and more that I can’t even describe, have left me feeling very sad for Karissa. Wishing I could take away the pain, make her happier again, see her bubbly cloud gathering again for more than a few minutes at a time on random days. It’s still there, don’t get me wrong – but it’s changed. and I can’t wait to see it come back!
As a quick Kendall update – she is hangin’ in there! She has been in a LOT of pain the past few weeks – seemingly stemming from her GI tract. It is causing oral and enteral (by mouth and through her tube) feeds to not be super successful – in that she seems like she is STARVING, but then can’t handle more than a nibble or two. She tells us multiple times every day how she is in pain, doesn’t feel good, has a bad tummy, wants her bag on (her bag is how we relieve pressure that builds up in her stomach – we typically only vent/drain her at nite time so her formula doesn’t build up and try to get puked out/into her lungs, but when she is feeling really badly, we hook the bag up during the day when she is too sick to move off the couch much anyways). Anyways – we have been able to give her an anti-nausea medication orally up to this point, but since we know her gut does not absorb most medications very well, and since we would need to be using it nearly non stop in order to stay on top of the nauseating pain, it has really not been much of a weapon in the fight against “kendall’s crappy gut pain” as of late. After going back and forth with the doctor for FAR too long, we were finally able to get this medication ordered as an IV med, and wouldn’t you know – halfway through the first dose being infused, Kendall sat up in my arms, announced that her tummy didn’t hurt, and her temp instantly dropped two degrees (she had been running a slight fever, which she does as a pain response quite often). I’m so glad for the relief, and yet frustrated that she had to go through so many weeks with ZERO relief to get here. We see GI and complex care again the first week of January – and I am REALLY hoping they have some better ideas to help get this gut moving again. TPN has been an amazing boost for her – and i love watching her learn new things in school, which i know she could never tolerate if she was getting her energy zapped by having to use her gut for all her nutrition/hydration – but it would be really nice to get some native functioning back here SOON! Overall – she is doing well, and for that we are absolutely BEYOND grateful!
Since Kaylen and my updates will be so long, I’ll end Part 1 here and hopefully get to Part 2 tomorrow!
hope all is well with all of you~ thanks for still checking in on us!
Have a wonderful Monday!