I really do like elephants. They are probably my favorite thing to go see at the zoo, if I had to pick a wild animal to ride, I’d definitely go for an elephant, and I absolutely adore watching them do tricks at the circus.
And all of that is a good thing since we apparently have an elephant living in the middle of our family room. You know the one, the elephant in the room that no one addresses.
Our elephant’s name is “Complex Special Needs Child”. She is citrus-colored, and wears a pink tu-tu with purple polka dots. And for the most part she stays very much to herself, not really intruding upon my life, or the life of anyone else in the family. We all do a really super good job of ignoring her on a day to day basis. But yesterday at our GI appt in milwaukee, she was acknowledged, and that gave her the freedom to kind of go trampling through my thoughts and the room.
I knew going in to this appointment, that it was probably going to lead to some hard discussions and choices about what else to do for Kendall health-wise. We have danced around the issue of placing a “GJ tube” for Kendall’s feeding for a few months now. When it was first brought up, I was SO relieved to have avoided it. I saw it as a major step backwards when we were just starting to FINALLY have some forward momentum. It has continued to be part of what I personally consider to be “background noise” – blah blah blah GJ tube, blah blah. Last week when we were up in milwaukee for the EEG (brainwave testing), our complex care nurse stopped in to check on Kendall because of all the other issues she has been dealing with for the past few weeks. When she brought it up again, and made a note that she was going to send a note to our GI, I knew then that we were going to be barreling towards a switch sooner than later. And when Kendall started a pretty hefty amount of vomiting this past Saturday night for no real apparent reason, I knew it was not a matter of “if”, but “when”.
So at the GI appointment yesterday, when Dr. Noe came in relatively concerned about the increased vomiting, and started asking some very pointed questions (when do we notice it, is it worse at nite, what is the consistency, etc) – I could tell it was coming. He did a good job trying to ease me into it, i’ll give him style points for that much. He offered to do an endoscopy, offered taking her completely NPO (nil per oral = no more bottles or cheerios or food – only slow feeds all day long through her G-tube), and then said, “orrrrr….we could talk about the GJ”. I kind of smirked at him that since this was the third time he had brought it up that maybe I should start considering it! He told me “right – cause I like to ease most parents into it, but hey, we’re already past that point. I think it’s time”
So – end of discussion.
And here’s what the rest of the conversation basically contained:
I went in to this appointment knowing that i was frustrated. I knew it was time to start asking the harder questions about what is going on with Kendall, and what do we expect from Kendall, and how do I fix Kendall, and the bottom line is…no one really knows. Dr. N looked me in the eye after i got finished ranting about my frustrations over the fact that it’s not like I am dealing with “well, hmm, do i give her tylenol or not? it MIGHT be an ear infection or it MIGHT be her molars…” – no, it’s, well ok, here’s a semi-lethargic baby whose appetite has noticeably decreased, been sick for almost 2 straight months, is breathing real rapidly and shallowly, and her core body temp is 93 degrees rectally…..is this a medical emergency? or do we ride this one out with a few pairs of pajamas and some warm water flushed through the tube? – and he told me basically
“Look, I know we don’t have the muscle biopsy back yet, but from everything I can see in her chart, we don’t have anything else working at this point BUT the mitochondrial myopathy. i think we have to all work towards that, in order to protect her better, keep her better comforted, until we DO get more solid answers. i’m going to be straight up honest with you – I do not expect Kendall to EVER be off tube feeds. She plain and simple does not have the function in her gut and intestines to support herself nutritionally by what she can handle by mouth in any given day. Especially in the case of a myopathy, we don’t ever expect to see that function increase. So our goal with Kendall isn’t to “help her be normal” – our goal with her is to keep her functioning as well as we can, for as long as we can.”
And therein lies the birth of our elephant in the room that no one wants to discuss.
The fact that Kendall is not only more complex in her special needs than I think either Ben or I have allowed ourselves to believe over this past year, coupled with the slap-in-the-face reality that Kendall may actually have mitochondrial disease. These are two things I have hardly allowed myself to even really consider over the past year. They are my little pets that I like to just tuck back into my brain somewhere and not really acknowledge them, even while I have to live with their presence. And really, the good news is that probably within the next couple weeks, I will be able to shove them back into their little hiding places, even if I was forced to take them out and look at them yesterday.
But that’s just a coping mechanism. Cause really, i get it. I know that Kendall is different and special and may have….life-shortening problems. i know that by going to the GJ, we are hoping to preserve her stomach function. But that eventually, someday, that part of the muscle will probably wear out. And someday after that, her intestines will probably start wearing out. And then, maybe some far far far away day, she will end up on TPN (nutrition through her veins). And while I hope with every ounce of my being that this ISN’T what happens for her, i know that sometimes we have to be willing to take it out and look at it, as a possibility. I think we have to come to terms with the fact that Kendall is indeed a more complex kid than we tend to treat her like. And that needs a balance. No, we don’t want to treat her differently, or be constantly consumed with her “needs” – and yet, it will not behoove her at all for us to blithely ignore all that she does require in the name of “treating her like a regular kid”. I think it’s going to be a mindset readjustment for our family. Learning to figure out what our end goals are – protecting her energy levels as much as possible, preventing, as much as possible, any major sources of stress which would suck even more energy out of her, and trying to allow her to use her energy on an even keel so we stop seeing some of these random swings in her health.
Ok so I am kind of rambling…processing out loud. There will be plenty more of THAT in the days to come I am sure!
In as quick of a nutshell as I can – I’ll try to explain this new switch to a G-J tube. i’ll try to do a post with links tomorrow for those of you who read too much google like I do. But basically, what Kendall has now is a “G-tube” – gastrostomy tube, which drips the food directly into her stomach. It gets held in place by a balloon that we inflate with water through one of two openings on the outside. One opening is in the middle, we plug an extension tube up to that hole, and the food goes in there into her tummy. The other opening is on the side, and that’s how we fill and check the water level in the balloon to keep it in place.
The reason we need to advance to a GJ tube is to bypass her stomach with the majority of her food. For reasons not known to us, the muscles of Kendall’s body have never quite worked right. When she was born, it was her lung muscles not allowing her to breathe right. She is in various therapies because her arm and leg and neck and trunk muscles don’t quite have the strength in them to do what they should do. And we have always known that her Gi tract (which is one big long smooth muscle from top to bottom!), doesn’t quite function like it should. And right now, her stomach part of that muscle just doesn’t seem to want to play nice with the rest of her. it just doesn’t have the energy it needs to hold in and process foods in quite the normal way. Maybe two months of sickness is just finally taking its toll – or maybe this would have happened without all of that stress. But either way, we need to find a way to ensure that MOST of her food can be properly absorbed, so she continues to gain weight, and grow, and get as much energy from her food and her meds as possible.
So to do that, we have to switch out the G-tube, for a G-J tube – gastro-jejunal tube. Meaning the food will now go through an extension tube and drip slowly into her intestines, or jejunum – hence the name! isn’t that clever???
Anyways – hoping that kind of explains it a little more.
We will be making a trek back up to Milwaukee next Friday, February 5th for an Upper GI study to rule out the .001% chance that Kendall’s tube just may sit too low for her be absorbing her food. Her GI doesn’t really believe that this is the issue because we would have seen the increased vomiting almost immediately after her surgery, and it would be with pretty much every feeding. Which is not the case. So once we have ruled that out, we will head over to Interventional Radiology, where they will hopefully NOT have to sedate Kendall, nor dilate her stoma too much (yes i promise that is as painful as it actually sounds), and they will insert the G-J button.
And then we can all go back to ignoring the large citrus colored elephant in the room again. For a good long while hopefully.
It has taken me about four hours to get this post written – and i am sure it doesn’t make a whole ton of sense – but there you have it.
There is a lot more that i need to get out, process, spew/vent/whine and then Praise the Lord about. But it will have to wait for another day. Preferably one after which I have had a great nite’s sleep.
Thanks for reading. And really, I know its tough to know what to say. I don’t expect you to say…anything, really, I guess. I am the queen of never knowing what to say to some people when they drop news on you that is….less than sunshiney? So I promise you – there is really no right or wrong thing to say. Something inappropriately funny always works though!
hope you all have wonderful Fridays!