At least it is festive!

A couple of days before Thanksgiving (November 23rd), KayTar's biopsy site started to get inflamed. The scar is shaped a bit like a needle, the length of it is a straight line, but the end has had a harder time healing and resembles more of a loop, like the eye of a needle. That little loop is what had started to look inflamed. I sent a photo to the pediatrician (it is like she has her very own subscription to Disgusting Photos Weekly with KayTar as a patient), who recommended topical antibiotics because at that time, it was just the beginning of a surface infection in one small area. By the evening of the 25th, there was a small, spreading warm red area coming from the length of the scar. I sent more photos and we went in for an appointment the next day. She took a culture and started KayTar on Bactrim for the cellulitis and continued the topical antibiotic for the abscess. By that evening, the cellulitis area had more than doubled in size, extending jaggedly from the biopsy site. We were put on ER watch, if it didn't stop spreading within 24 hours of the start of the oral antibiotics we were to go in, and we watched it carefully on Thanksgiving Day. It did stop spreading, and eventually it retreated, though when looking at her leg I can still tell where the worst of it was because the tissue has a slightly different hue. A week or so later, the culture came back and it was MRSA, which was what it was suspected to be. Before her surgery, she had folliculitis on her wee bottom, and although we had treated it and cleared it up before the surgery, the pediatrician thought a bit of that colony had migrated over to the leg and found a nice new home, marched right in through the opening and set up camp in her thigh.

On Christmas, I noticed that the small opening of the scar (the origin of the initial infection) had scabbed over, which was odd because after the MRSA infection, it healed nicely and there was no scabbing. The next day, there was fresh redness surrounding the little scab, I started applying the topical antibiotic again. By yesterday, it was getting a bit puffy around the edges and oozing blood. (Nice visual, right? You're welcome.) I sent the pediatrician a photo (see, Disgusting Photo Weekly) and she said to continue the topical and add in another round of oral antibiotics, so we started those last night. She said that staph tends to reoccur in the same area at the slightest irritation and we might do this a few times before it finally clears up for good. Dandy! Hopefully this time we started treating it early enough so that we don't get to the spreading cellulitis stage, because it was a wee bit unsettling, waiting for the medication to turn the tide in her tiny little leg. (Fun fact, the week she had the initial MRSA infection I had just had an exam over bacteria and 7 full index cards were dedicated to staph...it is one nasty little pathogen. The one thing I did not learn about staph in that course was just how much it enjoyed spending the holidays at our house!)

Here is a little public service announcement: Never email your pediatrician and jokingly say, "Merry Christmas! Hopefully I won't have to bother you until the new year!" Because then on Christmas Day your child will get into the peanut butter she is possibly allergic to, prompting you to email her (though, you might wait until the day AFTER Christmas to send this, to be kind), and the following day your child's MRSA infection will recur, prompting you to send yet ANOTHER email, complete with disgusting photo. We sure are lucky she loves us.

Children in festive clothing; totally irresistible to staph. Who knew?

Score 1 for the Internets

From time to time, I get a random email or comment with a link or a condition name for me to check out in regards to the KayTar. I always appreciate people taking the time to think of our little mystery and pass along information they feel might be pertinent, even though we've (mostly) gotten to the point we've (mostly) accepted the questions we live with and (mostly) stopped pining away for that elusive answer. A couple of weeks ago, however, I had quite the influx of emails/comments all suggesting a single condition, mitochondrial disease. Weird, right? In fact, just as I was telling Josh about the weird Twilight Zone-ness of it all, I sat down to check my email and BAM! there was another one. So I did what any overly superstitious blogger mature, responsible parent would do, I emailed the pediatrician about it.

She knows about the blog, so I basically said, "Hey, the Internets told me to ask about this!" only with a bit more verbal camouflage than that, and she was kind enough to not even point out I was taking medical advice from people who I fondly know only as "anonymous". She even went so far as to hop into her forklift and haul the behemoth also known as KayTar's medical file to her desk for review. She's good to us like that. She said that KayTar fits some of the symptoms of some of the mitochondrial disorders, but not ALL of the symptoms of any. Still, she feels like looking into it might be helpful, so we will. Her neurologist (who we saw yesterday) said that we've tested her peripherally for mitochondrial disorders, through labs and such, but since she is headed to the OR (on November 4th, in case you missed the rescheduling update), he's going to order a muscle biopsy to get some more conclusive results (though they'll be look at things other than mitochondrial disorders, too). Now the OR to do list look like this:

Tonsil/adenoid-ectomies
G-button installation
ABR
Muscle biopsy

We like to multitask, what can I say?

The neurologist said it will take about two months to get the results back and even then we might not learn anything new, but he said there isn't a downside to having it done since she'll be having surgery either way. Two months, meh, big deal. We've been waiting years for a diagnosis, so what's two months? Just a blink, really. I almost didn't write about this at all. After last year's hope dashing debacle I'm reluctant to approach anything even mildly resembling hope, but I don't really feel hopeful about this, just curious. How bizarre would it be if my friendly little lurkers were the reason we happened upon her diagnosis? That would definitely be a story for Mystery Diagnosis. Heh.

So to YOU, my dearest lurkers, (yes, I can see you back there in your trench coats and dark glasses) thanks for the suggestion!

PS: While I'm tapping into the collective knowledge of the Internets, does anyone have any personal or peripheral experience with the BAHA (bone anchored hearing aid)? We're researching options for KayTar's increased hearing loss.

Information Processing

KayTar missed school on Wednesday (and Thursday and Friday), but I kept her ENT appointment because she wasn't feverish (yet). I had questions I hoped to get answers for and I didn't want to cancel unless I absolutely had to. Turns out, I actually got some answers. Imagine that! I'm going to break them into categories to make it more easily digestible. I've had two days and I'm still trying to swallow it all down.

1. Progressive hearing loss...

was confirmed. With her right ear masked (white noise fed into her functioning ear to block out sounds) her left ear tested completely in the profound range. There was a spike at the very end, but it wasn't high enough to get into the severe range. However, her bone conduction results looked much better than the regular test and the audiologist isn't sure of what that indicates. She said we definitely need an ABR to get more information. The ENT said this can be done during her surgeries, it will just add about an hour to her overall anesthesia time.

I asked him to give me the odds of it progressing to her right ear and he said there are none. However, he did say that if we were to get an MRI of the temporal bones and detect a soft tissue abnormality on the left that isn't present on the right, then that would be a good indicator that the right ear is safe, but no abnormality means no indicator. Her CT of her temporal bones was normal, but an MRI has more detail where soft tissue is concerned and an abnormality might be detected. Her brain CT was clear, but her brain MRI was not...that sort of deal. So if and when she has another brain MRI, we will add on a temporal bone MRI to reduce anesthesia for her. She sees her neurologist on the 13th, so I suppose we'll chat about it then.

He also said her hearing aid is probably not helping at all at this point.

2. Surgery

He thinks we should move the surgery up. In fact, when the nurse came in to schedule it she said, "How is October 14th for you?" And then my heart just fell right out my ass and landed on the exam room floor. Thwack! It was a little embarrassing, because then I had to scoop my heart back up and swallow it down again. Gulp. Her ENT feels that postponing the surgery until December will cause her to miss more school for infection than she would miss for surgical recovery time. I see his point, I've thought it myself to be honest, but...of course there is a but...I've been easing myself into this decision. See, I've made it, but I know I don't have to act on it for a few months which provides me with ample emotional digestion time. When he talked about moving it up, but insides were all "Whooooa! Let's throw on the breaks here, people! This is not what I signed up for!" My brain was all, "Oh, yes. I see your point. If that is what is best for KayTar, of course we'll do it." Then my insides were like, "But we have loads of agonizing What Ifs to go over before this happens! Emotional torture yet to be experienced!" and my head was like, "If you've decided it is the best thing for her, why wait?" I should sell tickets to these debates, I think.

Since I couldn't make a decision, I did the next best thing...I talked to our pediatrician. God love her, she told me that either decision would be fine. She sees the medical reasons to do it sooner and the momical (yeah, I made that word up just now) reasons I might want to wait. However, she did inadvertently lead me to an epiphany of my own by reminding me that the recovery will be no picnic for KayTar. If she wasn't getting a g-button at the same time, there would be no way we'd be able to do the tonsillectomy in the first place, really. Can you imagine KayTar wanting anything to eat or drink after throat surgery? HA! As it stands, she will be in the hospital for about a week and then she will be home and not feeling great for another week at least. If we do this during her Christmas break, it will ruin her holidays. I don't want her to have horrible holidays! There are other reasons, too, of course. Cold and flu season is descending upon us and being tonsil-free and in possession of a g-button will make it much easier on her. Sure, she'll miss 10 days or so for the surgery, but hopefully she will avoid at least that many absences by having the surgery. The only downside seems to be that I'll miss a week of my classes while I'm in the hospital with KayTar. If that is the only real problem I can come up with, I don't really see any reason to put it off. And just like that, I think I'm okay with it, and not just in the I'm-forcing-myself-to-be-okay-with-it-through-sheer-force-of-will kind of okay, the REAL kind of okay. I might even feel a tiny bit of peace about it all. Strange how that happens when you least expect it.

On Monday, I'll call the nurse and see if the 14th is still available for both the ENT and pediatric surgeon and then we'll go from there. The trickiest part of this is going to be keeping her healthy long enough to HAVE the surgery, I think!

I'll stop talking about this at some point.

Yesterday, KayTar went:

To camp

To the Children's Museum

Out to dinner

Take THAT, Anxiety!

Last night I still fell asleep thinking about her hearing, about food, about illness, about the Button. So I probably didn't show Anxiety much of anything and KayTar will probably be sick within the week, but it felt good in the moment. We were free! Or we fooled ourselves into believing that at the very least. Either way, it was nice.

We are restarting sign language with KayTar, back to the beginning it seems. Once upon a time, it was her only communication, but her speech really began to emerge after getting her little purple hearing aid. Signing fell by the wayside much like her wee walker had, a crutch she no longer needed. Here we are again, though, feeling the the beginnings of a communication struggle. Our words are not always reaching her ears with the meaning still attached, so the hope is that sign in conjunction with speech will alleviate some of the confusion. The hope that this is all an imagined response to an incorrect hearing test is still trying to keep its head above water for appearance's sake, but I don't think it can keep it up for too long. We got her new hearing aid mold this week and it isn't fitting quite right, which causes copious squealing. It is loud and annoying and we ALL hear it. Except, well, she doesn't. It is squealing directly into her ear and there is no response from her. She used to tell us, "My ear is squealing!" or pull it out when that happened, but now, nothing. Just one more weight dragging that sad little hope underneath the waves. In the end, it can't hurt to reintroduce signing, but if we don't and the loss progresses? Well, we'd just prefer to work on it now rather than later.

At the museum, she spent quite a bit of time in the little mock-up grocery store...mostly counting things and reading the signs and labels. I looked around the store and realized, she eats absolutely nothing they sell. Nothing. A grocery store geared to children and she eats not a single thing that is sold there. Ice cream was an almost, but they didn't have vanilla which is OF COURSE the only acceptable flavor. At dinner, though, she ate part of a bread stick and dipped it in alfredo sauce, which was HUGE! She hates cheese, so dipping her bread into a cheese sauce was like a miracle. She also ate a few croutons and a small bite of my mom's birthday cake without vomiting. An offer of a second bite was met with locked lips and a stern head shake, but she ate a bite of CAKE with ICING on it! It was a bit of a miracle, really.

When I step back from the whole g-button thing, quiet my emotions and look at the facts, I know it is the right thing. It isn't taking anything away from her, she'll still be free to eat and drink what and when she wants, but it is giving her an advantage she doesn't have right now. The freedom of nutrition and hydration that isn't a chore. It will do for her nutrition what sign language will do for her communication, it will give her options, insurance. I know that is the truth of it, but the moments where I can disconnect my emotional response long enough to really believe it are still a bit farther apart than I'd like them to be. In between those moments of clarity, I question whether we are doing it for her or for us, whether we are making our lives easier or hers. I wonder if we are trading in the problems we know for unknowns, swapping things like strep and dehydration for site infections and granulation tissue. On this side of the surgery, even though we've made the best decision possible, it still feels like a bit of a gamble. Hopefully once we get to the other side of the surgery, it will just feel like relief, coupled with wondering why we waited so long to go through with it in the first place.



Sometimes KayTar is sneaky. Very, very sneaky.

Totally tubular

About a month ago (wow, a month? It doesn't feel like a month), I mentioned that the feeding tube was firmly on the table again. Since then, her eating habits have gone from Barely Enough to Most Definitely Not Enough. She has been sick almost without a break since school began and it makes her Most Definitely Not Enough status morph into Should We Just Pack Our Hospital Bag Now? status. I've been experiencing varying levels of anxiety about her intake and general health for a couple months now and although there are times when the anxiety almost dissipates, another illness or other obstacle is waiting in the wings and takes center stage before I ever get to experience that great big sigh of relief. During our last pediatrician's visit while we were going over a list of various KayTar-related items, she said, "Do you want the surgeon's number?" I eloquently stuttered something to the effect of "Yeah. Okay. Sure." and called as soon as I got home, lest I lose my nerve. To my surprise, because this NEVER happens, the scheduler said, "He can see you next week." So I once again eloquently said something like, "Yeah. Okay. Sure. That will be fine." and shakily wrote it in my calendar before I lost my nerve.

The appointment was last Thursday and it went well enough. I think I expected some sort of conversation about whether this was really the right thing for her (which I was internally agonizing over), but there wasn't and that in itself kind of made me feel better. Looking at it as something to be done, rather than an agonizing decision to be made was a relief. He was kind and honest, which I find to be admirable qualities in most people, especially people who will be cutting my child open. He was honest about the procedures and risks, which I was already familiar with from my own reading and surgical video watching, and he didn't make it seem like a huge deal, which was also a bit of a relief. Next week she has a tonsillectomy consult with her ENT and then their schedulers will have a chat and get a date on the calendar for both surgeries during her winter break. We're doing a two for one sort of deal, trading in the tonsils for a tube in hopes of cutting down on infections and improving her intake all at once. It is what every three year old wants for Christmas, I'm sure!

Internally, I'm still torturing myself a bit with the decision. Logically, I see it as the best thing for her or else we wouldn't be pursuing it. Josh and I both agree on it and he isn't really a medical intervention kind of guy, so that in itself is reassuring for me. Emotionally, though, I still have doubts that resurface periodically. This evacuation has been really good for her, which just encourages the little doubts to speak up a little more. She's been drinking 2-3 Pediasures per day again. She is finally healthy (KNOCK, KNOCK, KNOCK on wood). She has been snacking more often (on chips and bacon mostly, sigh). Logically, I know this is because we have been effectively under house arrest and there has been nothing to distract her from the work of drinking and eating and she hasn't been exposed to any germs outside of the home either, and we can't live our lives like that indefinitely. We can't keep her home from school or therapy or camp or fun or LIFE just so she has time to drink her bottle or avoid illness. It isn't a worthwhile trade for her. She loves school and therapy and all of the fun stuff her days are typically full of. To achieve this brief period of eating and drinking like she was 6 months ago, we've basically cut everything else out of her days. She shouldn't have to devote her 12 waking hours each day to receiving minimally adequate nutrition. We shouldn't have to pass on trips to the museum or the park or the zoo for fear of what little pathogens she will bring home as souvenirs and what it will do to her intake. But we do. We think about these things now, daily. They factor into the decisions we make for her every single day. And these big surgical decisions we've made recently, although they feel enormous and frightening at times, can change that. These surgeries will help her be healthier, they will help her get adequate nutrition without it being a chore for her. She can live her life fully, and whether or not that includes 3 bottles or not, we can make up the difference for her. When she does get sick and her oral defensiveness kicks into hyperdrive or she feels too poorly to drink, we can make up the difference. The g-button won't change her bizarre relationship with food and drink, but it will give us the ability to carry her through it when she can't or won't do it herself. I believe--we believe--that ultimately it is the right decision for her, but sometimes I really have to work to remind myself of that. In roughly three months, my little girl will have a wee plastic button on her belly and we fervently hope her quality of life will have improved exponentially for it.