Friday, February 24, 2012

In Which Connor Goes To Clinic And I Might Actually Get Sleep Someday

Another super crazy day today.  Seems like we've had a lot of those this week!

We got up bright and early this morning and drove down to the hospital for Connor's developmental clinic visit.  This year he was in the neuromuscular clinic, so we saw a developmental pediatrician, physical therapist, neurologist and genetic counselor.  Also the urologist and the head of the developmental peds department popped in as an added bonus. 

Basically the purpose of the developmental clinic is to make sure Connor is receiving all of the treatment and services he needs, and to get a general picture of his overall health as well as current medical issues.  Jer was able to come for the first two appointments, which was pretty nice.  He doesn't get to come to Connor's appointments very often, so it's always good to have him along. 

The basic conclusion the doctors came to was that for the most part we're on top of things as far as Connor's care goes, and that we've got our bases covered with his therapy, adaptive equipment and specialist appointments.  There was one thing that the developmental ped thought we could add to our repertoire as far as services go, though.  Connor is enrolled in the Extended Care Health Option (ECHO) with our insurance so that we can receive the medical equipment that he needs.  One of the things that ECHO covers for certain children is home health care.  Because Connor is a medically complicated child and he has a g-tube pump at night, we should be eligible for 40 hours of home nursing care a week.  This isn't meant to be used for childcare services, and it is in addition and not a replacement of our current respite care services. 

The big benefit for us is that five days a week I could have a nurse come in and monitor Connor at night while I got a blissful eight hours of sleep.  Seriously, eight hours of sleep on a regular basis sounds like some sort of crazy pipe dream to me right now.  I can't remember the last time I got eight hours of sleep five days in a row, but I think it probably happened before Connor was born.  So if we can get that set up it would be pretty fantastic for me.  At the very least it would seriously lower the amount of money I spend on caffeine each month. 

It wasn't all great times today though-- he started getting a migraine after the first hour or so of clinic and he threw up all over me.  Then when the urologist came in and did his quick check the little guy's diaper didn't make it back on properly and about twenty minutes after he threw up all over the place he somehow managed to pee all over my lap and yet mysteriously get none of it on his own pants.  I still have no idea how that happened.  Anyway, we still had about two more hours of appointments to get through, and I wasn't exactly as fresh as a daisy by the end of it. 

The little guy wasn't feeling so hot either, though it wasn't because he was covered in various bodily fluids.  He spent the whole car ride home with his eyes closed and his fist pressed up against his forehead, and then he napped for the next four hours.  I gave him some Tylenol, but sleeping it off seems to be the only really effective way to treat his migraines.  When he woke up he was totally wiped out, and just wanted to spent the rest of the evening curled up on my lap with his head buried in my shirt.  So it was not the best day for the kiddo-- being poked and prodded and then getting a massive headache is no fun. 

Of course now he's wide awake and chipper.  Oh well.  At least I can sleep in tomorrow.



Anonymous said...

Migraines are the worst. Poor little guy. Hope he's feeling better this morning. I've found that nothing helps except sleeping, either.


Anonymous said...

I hope Connor is feeling better. And I am keeping my fingers crossed that you can get a night nurse!!

-Julia O'C

Julia said...

Oh, my -- sleep! And this could be even more essential once Ellen comes home and you're needing to find the energy to meet the needs of two kids. I'm so glad there's the prospect of a night nurse.

But boo hiss on the migraine (and the bodily fluids).

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