Life with MS & EDS

May 1, 2009

Prednisone – Day Nine

Filed under: Uncategorized — by mseds @ 8:14 pm
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Today was my first productive day in two weeks!  The birds woke me up around 5:30 despite the white noise of my fan.  I gave up on sleeping at 5:50 and have been going strong ever since.  I finally got some things done at work.  After that I packed away all of the clothing that doesn’t fit Little Sister.  Tonight I went through Big Sister’s stash of old clothing and found a ton of tops that will fit Little Sister.  Bottoms are in much shorter supply, but hey, that’s all the less money we need to spend.  I even found PJs and swimsuits!  So aside from terrible reflux, things are going well and that promise of steroid-driven energy seems to finally have come my way!

I called Dr. Specialist this morning about the reflux.  It was horrible last night.  My throat was on fire.  I got the okay to take 3 Zantac 150 a day instead of 2.  I always take one with the Prednisone in the morning.  I took an extra before dinner and I’ll take the last before bed.  I also bought a bottle of ultimate strength Mylanta to coat my throat.  Little sips every few hours seem to be helping.  Thank goodness!  Hopefully I won’t have to sleep upright like last night.

Today we also started getting ready for Little Sister’s dental surgery next week.  She needs to have at least 8 cavities filled.  Since she has hypotonia she has trouble sitting still (she is constantly moving) and they couldn’t get a clear x-ray at her last appointment, but it’s obvious that a lot of work is needed.  She’ll have x-rays taken again while under anesthesia on Tuesday and they’ll let us know the full extent of the work needed then.

I had a good conversation with the pre-admission nurse this afternoon.  I went through my basic blurb about Ehlers-Danlos Syndrome.  Things always take a bit longer to go through about Little Sister than the average almost 5 year old.  Most kids this age have not been in the hospital 6 times, under anesthesia 3 times, seen a bunch of doctors, have a diagnosed medical condition, etc.  Then we went through the basics like not being potty trained, fine motor challenges, oral-motor difficulties, and so on.  I was surprised by the number of questions they asked, but I’m glad they were pretty comprehensive.

The nurse was very nice and seemed to take down all of the things I said.  My main concern is that Little Sister has sensory issues that make her freak out a bit more than the average kid.  Getting her blood pressure taken is as scary for her as getting a shot.  I made sure to mention this and the nurse said they’d be willing to do it after she gets the “giggle juice.”  I just need to ask to talk to the anesthesiologist before the nurse does anything and ask that we change the order around a bit.  We may even try to get her changed into the hospital gown after the giggle juice.  She hates hospital gowns!  Now if only I can find a way to get them to agree to take the IV out before she wakes up.  That will be the biggest challenge.  If she sees the IV in there, she won’t use her arm for weeks.  She’s both stubborn and ambidextrous, so she can go quite a while using just one arm.

But, before Tuesday, I have a wonderful weekend planned to keep my mind off of everything.  I can’t wait to get to Ocean City, NJ tomorrow for our girls’ overnight before the MS Walk on Sunday.  It’s likely going to rain, which stinks, but I’m sure we’ll still have a great time.  I can’t wait for tomorrow!  For all of you who made donations, thank you so much!  We raised more than I ever expected.  For those of you also doing MS Walks this weekend, I hope you have a great time!

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