Appointments Galore

Gracie's last abdominal migraine cycle ended, in it's entirety, January 23rd. My absence here since that horrible week, I'm happy to report, is due to a lot of busy days... school, medical appointments, fun, therapy appointments, visitors, more appointments, and so on. Being that the cycles last between 4-6 days and occur approximately every 16-21 days, we capitalize on the good days and accomplish as much as we can, not just for Gracie, but for all of us. The space between is exhausting for wonderful, "normal" reasons, and though I am downright spent at the end of a day, you won't hear me complaining about being that kind of tired.

It's no secret that Gracie has a level of fight and resilience beyond words, but after that last cycle, her return to hard work at school and therapy (OT and PT twice a week each, plus mommy therapy) reached a new level in my opinion. She went from being in terrible pain, having dusky pallor, being listless, retching, sweating and unable tolerate pedialyte (let alone formula) to having two great weeks in a row at school. Last Monday was a marathon day with school (where she had a great day), a cardiology appointment (more on that in a moment) and then an hour of therapy where she rocked it by working on stairs with her PT and sit-to-stand while painting (thus, reaching and using one hand to balance on the wall) with her OT. She was tired, but she rallied through. She had been up since 4:15am, left the house at 8am and didn't get home until almost 6pm. ROCKSTAR. Her PT even commented on how amazingly well she continues to bounce back without skipping a beat. That's my girl!

The Medical Appointments:

GI
During her last migraine cycle, we saw her GI doc. My mission with him was to show him what she's going through, how she looks, why it's impossible to get nutrition in her during this time, etc., and to show him my records of her calorie intake since her last multiple-day hospitalization in October. Because of the frequency of the cycles, Gracie's missing a lot of nutrition. The good news is that I can bump up her intake in the space between and give her more (because when she's well, she now tolerates her feedings beautifully!). But even with that, I'm limited on volume for cardiac reasons and still can't catch her up enough - - averaging out a month, she's short roughly 300 calories per day. Thankfully, this doc (unlike another in the same practice) completely agrees with the way we handle her feedings during a migraine. He, too, is concerned with how hard she can retch and the risk of her slipping the repairs that were surgically made last summer. He urged me to try a calorie booster that was unsuccessful in the past (she vomited and retched for hours) to see if she'd do better now. I was skeptical, but said I'd try it over a weekend so that she'd not miss school if it made her miserable. Guess what?! It worked! We've been giving it to her for a week without issue... Woo Hoo!
We will see him in another month to check Gracie's weight and height. The goal is to get some weight on her... she's had a bit of linear growth since the fall, but still only weighs 29.5 pounds.

Neurology
I brought my records of Gracie's cycles (for the last year... I have records since she was just a few months old), a list of the symptoms, video and pictures. For the umpteenth time I expressed my belief that this appears to have a cranial nerve and sinus related component. (She does a lot of pulling on her face - especially her mouth, her color changes drastically, she covers her eyes and/or presses them, she has a increased secretions - - saliva, not mucous - - through the whole thing, etc.) He didn't really want to look at any of it... not in an unsympathetic way... just that there isn't much he can do other than mess with her meds. He'd like to get an MRI of her brain and take a close look at the nerves, etc. but Gracie has a pacemaker and it's simply out of the question. She had one as a baby, but her nerves were so small then. A CT of her brain won't show us anything in enough detail (with regard to nerves - - she's had three brain CTs in her life and we already know her brain structure is not normal), so, once again, he made some medication adjustments. (We are looking into pursuing another go at alternative medicine, though.) We will call him in two months to let him know if the pattern has changed at all. This is so very frustrating, not to mention heartbreaking... as this central nervous system/neurological piece of Gracie's medical drama has the most impact on her... it affects her nutrition (which, thankfully, is the best it's been since 2007), but more than anything, it affects her quality of life... every 16-21 days.

Opthamology
Gracie has a cataract in her right eye... which is, thankfully, her non-sighted eye. We will follow-up with the doctor in April to determine when to do a lensectomy, though she did say she'd like to wait as long as possible. The biggest concern with Gracie's right eye is that it is so small - - the orbital is smaller than normal, but the eye is even smaller than that - - and therefore, more prone to irritation and infection. The opthamologist stressed how fragile that eye is and mentioned that there is a possibility that, at some point, her right eye may have to be removed if it doesn't remain healthy. Our first opthamologist had mentioned this to us years ago, so I was not shocked by the statement. And, even though it is a "possibility down the road," I'd be lying if I said I didn't feel my stomach drop just a bit at the thought. In the wise words of my mama, I will "not borrow trouble." There are plenty of "for sure things" on my plate (and Gracie's) right now.

Orthopaedist
Gracie's scoliosis is slightly worsened (not too surprising given how sick and inactive she was for many months last year). The rotation in her pelvis has also increased and has caused her to sit even more crooked. The bracing "contraption" that the doctor ordered for her hips last year is not a safe option as it forces Gracie to lay flat on her back - - not good for a kiddo with a trach who needs to often roll to her side to clear her airway (not to mention how incredibly uncomfortable it is). She has had other braces for her scoliosis in the past, but they restrict her mobility so much that everyone (including the ordering docs) feel that it's better to give her the option to move and gain strength as those activities will also help with slowing the deterioration of the curve. We go back in April.

ENT
Fluid in her ears... as always. That's why she can't wear BTEs (Behind the Ear hearing aids). My bigger concern during that visit was the irritation under the right side of her trach. Ever since the pulomonologist increased her trach size (and thus the shape of her trach) we've dealt with a very irritated spot... so bad that it became a Grade 3 pressure ulcer and her ENT was just as displeased as we were. Much to the chagrin of the doc that wanted her trach size increased, I have since put back in the smaller trach to relieve the pressure on her skin and, thankfully, the nasty ulcer quickly healed. Now we need to see pulmonology to find out what they want to do. The only thing I know is we won't be putting Gracie through that kind of discomfort again... they'll have to figure out another way to protect her floppy airway.

And, speaking of trachs... My sweet girl has become a trach yanker in the last week. (John and I have always felt so lucky that Gracie has been a "perfect trach child" - - never really tugging at it or pulling too much on her ties. Those days, sadly, seem to be over.) What does "trach yanker" mean, you ask? Well, last Friday, she was in the family room laughing hysterically and I realized she sounded "different." I came out from the kitchen to find her trach out and her hand over her stoma as she's blowing air against it, cracking up and quite pleased with her little self. Then, this past Friday night she did it again. And, yesterday, she did it four times. For those of you who don't know, this is NOT good. Trachs must be sterile (or clean) and once it's out, it shouldn't go back in without proper cleaning. I have four more trachs to clean today. She just cracks up at me when I sternly sign "no" and put in a new trach. What's terrifying about this, more than the germ factor (which is huge, of course), is the fact that while the trach is out, something could easily enter that stoma and get lodged in there and/or inhaled into her lungs. She also has a floppy airway and the trach helps support that and keep it open. And, she can't swallow her secretions, so if the stoma closes up enough (which can happen quickly) that I can't even get our smaller, emergency trach in, she could choke or drown on her own saliva. If only she understood this... perhaps she wouldn't think it is so hilarious. Grrr.

Cardiology
Pressures remain stable, volume is still within acceptable (non-surgical) ranges and though her mitral regurgitation is moderate, she is no longer showing any signs of borderline heart failure. Great news!


We will continue to see him every three months to monitor the pacemaker in between the phone monitoring we do at home. He said, "I don't think we need to echo her again for a year unless she is symptomatic or starts having more "normal" activity for a child her age." I took this with a grain of salt, chuckled at him a bit and asked him to knock on wood because in the spring of 2006, we heard something very similar from her cardiologist. By July she was in early stages of heart failure and by December 2006 she was having her third open heart surgery. (By "normal activity" he means walking, running, etc. It might sound weird to say I hope he needs to echo her sooner, but with respect to "normal activities," I can only dream he'd need to!)

Dentist
Both kids went last week. We feel so lucky to have two kids who truly enjoy going to the dentist! :-) Unfortunately, we learned that Gracie's enamel didn't form properly on her permanent molars (probably due to how sick she was during the time the enamel formed on those teeth), so we will be having to keep a close eye on those... plus she is such a grinder, which doesn't help matters. She also has terrible recession of her gums where her bottom two front teeth are, so we will also be keeping a close eye on that as, sadly, some grafting will probably be in her future. He said that it's not anything we are or aren't doing... just the way it is for her. Bummer.

That's it... for now! Isn't that enough?!

Coming soon:
Follow-ups on most of these appointments, plus endocrinology, infectious disease, pulmonology and audiology (which has been cancelled four times since last June due to hopsitalizations or illness). Good grief!