Our last hospital visit. Ugh.

I've had a few days to ponder and mull now.  I still feel a little numb, and just exhausted.  My Facebook friends know most of this, but I didn't want to leave anyone out.

I had emailed the nurse practitioner at our rheumies office last Monday, in preparation of our visit that Thursday and Friday.  She spoke to the doctor, and we all agree that she needed a new swallow study done.  Emily had told me that she feels like there is a bubble in her throat when she tries to swallow.  Hmmm.  Since she had started to get stuffed up again (on antibiotic number 2 for the month), I mentioned that, as well as the headaches she has been having.  I assume they are either from the sinus infection from hell or maybe from the growth hormones.

I wasn't going to tell her about the upper GI until right before.  I asked for Xanax for her.  She never uses that stuff except for medical testing.  She just freaks out.  It's bad.  I guess that everyone thought I was overreacting.  Nope!  It was supposed to be outpatient at 11, but knowing how difficult it would be to get us out on time, they made it inpatient at 11:30.  She woke up on Friday morning to the nurse telling her it was time to go downstairs for the test.  She got herself so worked up that she almost hyperventilated.  She cried for a good hour.  She didn't calm down until someone finally got her a 1/2 a Xanax, but it was too late by then.  She was rescheduled for 3:30, though no one told the scheduler downstairs.  We were discharged at 1:30, so we had time to kill.  We couldn't really leave, and since she couldn't eat, we tried to avoid all of the food places.

They told me to give her another 1/2 Xanax around 3.  Despite having one full Xanax in her, when they took her back she still had another hour meltdown.  I can't blame her.  She has no control, no say in any of this.  It sucks.  If I didn't suspect it was bad, I never would have pushed.

After she finally calmed down, she worked with them to help herself.  She asked to be slightly elevated.  I watched the barium start to go down, then back up, several times.  At one point, I thought the camera was showing something else, or glitching.  Nope.  What it basically showed is that she has, as the nurse practitioner emailed it, "Her study showed severe reflux and little motility of her esophagus."  Hmmm.   I suspected as much, but it still hurts to see it.  At the moment, that is really all that I know.  This is in conjunction with her patulous esophagus, which if you missed it, means that the muscles at the base of her esophagus have dilated and spread away from her stomach.  .  Well, this explains why she doesn't eat.

At the same time, she has spent 30 days on Augmentin and 10 days now on Clindamyacin, and she is still sick.  She had an x-ray last week that showed she is still gunked up, so the ENT is working on getting an authorization from rheumie to get this expedited so they can culture her and suck out the junk up there.  I really, really think she needs to be on a prophylactic antibiotic.  Then maybe we could stop IViG, and maybe not have to sleep over the hospital every month.

But, wait!  There's more.  I have noticed for the past couple of months that her ALT (muscle enzyme) has been a tad elevated.  I'm no longer the one to panic at the first sign of trouble, so I've just been keeping an eye on it.  However, Monday her thighs hurt badly- like a 6-7 on the pain scale.  That could mean that her dermatomyositis is also coming back, which would mean adding Prednisone back in.  We really, REALLY don't want to do that.  It makes me so sad.

If all of that wasn't enough, they ran her cortisol levels on Thursday morning before she had any of her hydrocortisone.  A normally functioning adrenal system will have a count of 10 or higher.  She was only at 1.3, so the hydrocortisone stays for now.  And the final kicker was the email from camp that she is on the wait list for both sessions.  At least we had a few good months.  Hopefully this will all pass quickly.  I guess we need to find a set Gastroenterologist now.  We've seen a couple before, but mostly as favors to our rheumies.  We don't really have anyone set.  Hopefully endo will be able to help her more with the cortisol, and ENT will see her fast to help her sinuses.  Please pray that all of this comes together just right.  Thank you.

Free time!

I apologize for my slacking off when it comes to posting.  I am finally on summer break from school!  It's been a very tough semester.  I actually failed a class and then got a B in my other class.  I don't approve of either, but I've had quite a bit to adjust to.  I didn't even realize that it was stress until the semester was almost over.  I'm praying this doesn't kill my honor society status!

If we were the type to give up, we would have given up on growth hormone quite a while ago.  However, we stuck with it and she finally got it!  It has been about 2.5 weeks.  The down side is that she has had a major headache from it, so we agreed to skip a few days to see if the headache would go away.  We are hoping that when she re-starts it, her doctor will approve a lower dose, and then gradually move back up.  We have already seen some of the benefits:  improved sleep, for one thing.  It is also supposed to strengthen bones, which is wonderful considering that all of the years of prednisone can cause osteoporosis and brittle bones.  I know that this is the right step; we just have to find the right mix here.

She has another sinus infection.  If you read the last post, you may recall that we had a runaround trying to get her into the ENT for a swab and suction.  She ended up getting better spontaneously on her own before we could get the authorization.  Now she's sick again.  She just had 30 days on Augmentin.  She was sick again after a few days.  Now she is on Clindamyacin again.  I have another call into the ENT.

The other bit of Emily news is that, while we were at our pediatrician's office, she tells me that her throat is "bulging" again.  Apparently it is difficult for her to speak, and to eat.  The eating is hampered, but she also has too much reflux coming up, too.  None of the usual meds seem to be helping, so I emailed our doctor to let them know in advance.  This is a hospital week.  It should be interesting.  They are supposed to test her cortisol levels to see if we can start dropping hydrocortisone, and now they will also run an upper GI to see what is up with her throat.  Also, she has been telling me this week that her muscles are bugging her.  That could be from the growth hormone (we are hoping!), but it may not be. The last two visits I noted that her muscle enzymes were elevated.  Not a huge amount, but definitely increased.  I am hoping this will be just a fluke.

Zach is doing pretty well.  Now that he's had a steady supply of Enbrel he is doing better most days.  He's had a few days with a lot of back pain, a couple with knee pain, but overall he is good.

We are going to try the Paleo diet.  I am definitely going to try the Whole 30 on the advice of two friends.  While Emily is one of the pickiest kids in the world, and she would rather starve than eat broccoli, I am hoping that if I lead by example, they will follow.  I really feel like this could help, but if I push, then I have no chance.  I am not looking for a cure or a miracle; I'm not setting us up for a fall.  However, I see correlations with food myself.  I know that soda makes me more tired, it breaks me out, and I feel yuck.  I recently realized that is the same for most sugar.  I feel worse when I eat certain things.  I had chips this weekend and now I hurt everywhere.  I'm almost positive it's from the chips.  So, perhaps if we cut all of that out, things will be better.  The essential oils have been amazing, too!  There is an oil for everything!  Our favorite is doTERRA's Deep Blue.  Especially when we use a friend's concoction and add more wintergreen and frankincense to it.  Amazing!  Now I see that many of my migraines were from my neck.  It's been a fascinating couple of months!

I am hoping for a calm summer since we didn't get to do anything fun last year.  This year I am hoping that we can go out on Friday's to do fun stuff!  After this week...  I will try to post from the hospital when we know more.  Take care!