Jordan getting ready for a walk with Devon on Saturday morning, rainboots & all.
We always seem to be pretty busy around this house, but lately it's been exceptionally busy, for Jordan in particular. It seems to come in waves with Jordan: We can go months in "normal" mode -- then suddenly we're in high gear with all the "extras."
Besides Jordan's normal regiment of feedings, medicines, & therapies (physical, occupational, speech, vision, & education -- each week or every-other week with the therapists, and daily exercises at home), she's had 2 hospitalizations and numerous doctor appointments in the last two months, and more on the horizon over the next few weeks.
After her tonsils came out in September (and she survived respiratory arrest from a bad Codeine reaction) her sleeping & breathing improved almost unbelievably. But, the tonsil removal didn't totally solve the "gurgly" breathing, so just to make sure we aren't missing something, I took her to the allergist last week. He tested her for a few foods & the common environmental allergies (28 pokes on the back!), and as usual with Jordan, her test results were totally normal! No allergies, and no more Zyrtec (it seemed to help back in May, but I must admit that when we stopped it last week I haven't noticed any difference or increase in mucus or secretions gurgling around in her throat).
The allergist is partners with a dermatologist, so we set up an appointment with him as well. Over the last few months she has been getting red marks on her right elbow, hip, & knee. I was worried these were the beginnings of pressure sores, and asked every medical person or therapist she saw what they were. No one knew, and no one thought they were pressure sores, but even so, we avoided putting her to rest or to sleep on her right side just to make sure*. The strange thing was, that even when she wasn't on her right side for almost a month, the red marks didn't disappear for weeks. Also, sleeping & resting on her left side didn't cause the marks to appear on her left side. The dermatologist quickly admitted that he didn't think they were pressure sores either, but he also had no idea what they could be, so she had to have a small skin biopsy right there in the office. Poor Jordan, not just more needles (numbing), but an actual cut in her arm this time (it was her 3rd skin biopsy, as well, the first two were for lysosomal storage diseases/metabolic diseases when she was 6 months old -- also totally normal, as are all her tests [except brain MRIs & EEGs]). Those red spots finally faded, and on Sunday she had 2 more small ones -- one on the right hip & one on the right elbow. The biopsy results came back today (after an independent second opinion no less): non-specific. Of course, just one more of Jordan's little mysteries!
It seems to be a particularly harsh cold season already, and Jordan is suffering like everyone else, only worse. She's already spent 4.5 days in the PICU in October for nothing but a cold, and it hasn't fully resolved yet. Two weeks ago her ears were draining a mucky yellow goo -- this was good -- it was draining through her T-tubes instead of backing up in her ear & causing an infection! But, as all good things, it had to come to an unfortunate end. The T-tube in her left ear extruded, so last week I had to take her to the ENT & have him remove it from her ear canal (it had been there for a week & hadn't come out on it's own). T-tubes are supposed to be semi-permanent, and last a couple of years, rather than a few months, like more traditional ear tubes. But Jordan has only had them since February, so the one that extruded only managed to stay in place for 8 months. Ugh! Also, she had a bit of granulation tissue on her eardrum, so she's been on antibiotic/steriod drops for over a week. She went back to the ENT yesteray to see if it has healed (almost), and in 3 more weeks he'll decide when to replace the tube. She frequently has drainage from them, which prevents infections, so it's important to keep them draining. Luckily it's a simple, outpatient procedure.
Last Monday she had to have her blood drawn for the neurologist. We see him next week. We've had great success over the last year controlling her seizures with Keppra, Depakene, and Tranxene (much to the medical world's shock & amazement), but we have to monitor her Depakene levels every 3 months to make sure her dose is still therapeutic. Equally important, we have to closely watch her liver function, as liver failure can be a nasty side-effect of Depakene. In the past getting blood from Jordan has been a nightmare (and starting IVs is not much easier), but we totally hit the jackpot this time! The phlebotomist at the lab on Monday was the only that had never drawn Jordan before, and she got her bleeding like a stuck pig on the first try! I was amazed, and for once she got ALL of her labs drawn all at once (Depakene trought, complete metabolic panel, complete blood count). For once we'll have a great set of data when we see the neurologist next week!
Unfortunately, we have been seeing seizures here and there lately. Not alot, and not serious ones, but but enough to make us wonder if the "honeymoon" of seizure control is near. Having seizure control with her has been our saving grace this past year -- she really couldn't function at all when she was seizing all the time, so we're desperate to prevent seizures at almost all costs. But, on a side-note, we're also very interested in seeing what her alertness would be like without her Tranxene. It was never intended to be a seizure med for her, as we started it as an anti-anxiety med when she was about 8 months old, after a brutal 8 weeks on a steriod (ACTH) for infantile spasm seizures (which are one of the few types of seizures that can cause brain damage). It calmed her down, but perhaps a little too much. And desperate to get & keep seizure control, we have continued her regiment for the last 2 years. But now, since the Depakene seems to be the major player in stopping her seizures, Devon & I both want to know how much more awake she would be without it. Could increased alertness help her see & learn a little better? We've decided it's worth trying! Unfortunately, it's very difficult to get off Tranxene, and I wouldn't be surprised if it takes up to a year to wean off. I hope that the neurologist is supportive of this idea.
Things are changing all around, and along with some minor siezures, we're starting to see evidence of reflux again. Since we started her on blenderized food (instead of formula) over a year ago her constipation resolved, and her reflux followed suit. She's been off her Zantac since May & doing great, but now the painful burps & hiccups are back. We're starting the Zantac again to see if it helps, and will be off to see the Gastroenterologist next week. I hate adding medicines to her daily regiment, but I hate to see her suffer even more, and Zantac side-effects are relatively minor compared to some of her other meds.
She also has an appointment with the Neurometabolic team & the dentist in December. Never a dull moment!
On the school front, Jordan will "age out" of her Early Intervention program when she turns 3 (30 December), so now we are in the early stages of figuring out how we're going to get her to pre-school. We met with the school's nurse last week as a very preliminary step to getting her into the classroom. I can see that it is going to be a logistical nightmare, if nothing else, and I am nervous (especially in this economy) to see how the school district is going to handle her special needs. Of course they are federally mandated to accommodate her at school, but that doesn't mean that they are funded to do that (nice trick of government, eh?). Devon & I are determined to fight for her rights, but we're hoping it doesn't come to that. We just believe that she deserves to be in a classroom with other children, or at least to give it a try & see how it goes. But everything from getting her there to what she will do while she is there is up in the air. Obviously someone will need to go with her -- a nurse from the school? Provided by us? We'll just have to see what the logistics will be when we get to her IEP meeting (individualized education plan).
It's only going to keep "raining & pouring" around here, through November right into December. And right around Christmas-time it'll be time for "baby brother" to join the chaos! Never a dull moment!
It's enough to wipe a girl out! Jordan is an even better sleeper since having her tonsils out in September, and we sleep better, too!
*Pressure sore scare me to death -- Christopher Reeve eventually died due to infected pressure sores -- and he had to have some of the best medical care in the world!
1 comment:
Sounds like Jordan is having no trouble keeping you busy. Do you still have the nurse in 5 days a week? Could she go to school with Jordan?
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