Friday, May 12, 2017

Sam's still sick

It sure has been a long month of doctor's visits, and it doesn't appear that the end is in sight any time soon.

On Sunday this week I didn't even think about Sam and sacrament meeting.  It wasn't until we were sitting in sacrament and Sam was holding the bread tray, looking at me completely horrified that I realized I had let her down.  She ended up taking a piece of bread for sacrament.  Travis and I didn't think it would be a huge deal.  We thought wrong.  Ten minutes later she was sick.  She ended up getting up and walking out of sacrament and walking home.  Epic mom fail.  Lesson learned.  Travis has talked to the Bishop to find out what we need to do.  Hopefully we will have our crap together for Sunday this week!

After the sacrament fiasco I told Sam I wanted her to start a food journal.  I figured that the GI would want to see one anyway so we might as well make the most out of the time we have to wait to get in to see that dr.  I don't want to have to wait three weeks after an appointment to make a food journal.

Samantha is still on home bound for school.  I know she misses her friends terribly.  The girl is super social and she has not been out and about much in the last month.  She's been to one dance recital, one choir concert (to watch the girls she helped choreograph a dance piece for), one dance competition and about three dance classes.  I'm surprised she hasn't gone completely stir crazy yet.

The good news is that I think Sam's finally only sleeping 8-10 hours at a stretch instead of 12-18.  This is progress!  Yesterday she woke up on her own and was in the shower before 10 am.  That has not happened in an entire month!  I was a happy momma.  When she got out of the shower she was talking to me and told me she had gotten on my scale before getting into the shower.  She said she was down EIGHT POUNDS since she saw Dr. Garg last week.  Tell me where she's got eight pounds to lose (third from left).

After my conversation with Sam was over I called the pediatrician's office.  Now, I'm not generally one to get into hysterics super quick.  However, given the fact that she maintained weight for three weeks and is now down eight pounds, I started to freak out a little bit.  Yes, I know that if she's got Celiac's and we are cutting out gluten she's going to lose some weight - my mother in law did.  She also spent Monday vomiting (Brooke and Olivia had a well check so when we were at the pediatrician's office he called in a prescription of Zofran for her).  However, she only vomited three times Monday - not nearly enough to lose eight pounds.  I explained to the nurse what was going on and what Sam had told me.  She said she would send a note to the dr. and have him or someone else get back with me.

Luckily it didn't take too long for the dr. to call me back.  He said he had been reviewing her file and all the labs and the ER notes.  He said that he noticed that when she was in the ER and did a urine sample that her urine had some sort of crystallization in it which could be indicative of kidney stones.  However, since she didn't have any blood in her urine he didn't think it was kidney stones.  He also said that her x ray showed that she was quite backed up.  I told him the ER had told us that she had some fecal blockage but nothing that would cause what she had going on.  He said he didn't think that the constipation was causing her problems but that it could be exacerbating it.  He wants to put her on Miralax.  I already know this isn't going to go over well.  When Sam was little and was constipated all the time they put her on Miralax.  She hated it.  She said it was like drinking gritty juice.  Not only that, but when she made Mac & Cheese for the girls the other day, she took three bites and ended up with diarrhea ten minutes later.  How is she blocked up if she's got diarrhea from eating gluten?  She claims she's going every day but she still hasn't ever given me a stool sample to take in for them to check for H. Pylori.  I've told her time and time again just do your thing and I'll put it in the sample bottles!  Apparently that's asking too much.  Sigh.

While talking to the pediatrician he told me that he had called the Primary Children's GI department again and they could get us in first thing Monday morning.  He said the reason they hadn't offered us that appointment before was because they knew we were coming from Cache Valley.  I told the dr. that I didn't care if I had to get up at 3 am and haul all six kids with me, call them back and get me that appointment because she isn't getting any better!  Needless to say, we now have a 7:40 am appointment at the Primary Children's Outpatient Center in Riverton on Monday.

Today I also finally heard back from Dr. Feffer's office.  I told the girl that called me what was going on and asked what she thought about the possibility of it being a sleep disorder that had come on so suddenly.  She made sure to tell me that she hadn't been to medical school but she hadn't ever heard of a sleep disorder coming on that quickly.  She told me that she doubts it's a sleep disorder.  We ended up deciding to put her on the schedule because they are booked out until about June 20.  I told the girl I wanted to go see the GI on Monday and see what that dr. thinks.  She told me that if we decide to cancel to just give her a call back and she'll cancel our appointment.  I'm hoping we can cancel - found out their office is clear out by West Jordan!  I don't want to have to drive all the way over there for a sleep study any time soon!

The timing of being able to get into the GI's office is a major blessing.  We were originally told June 8th.  Travis put his notice in at Geneva Rock on Monday.  Tomorrow is his last day there.  He's going to go work for my brother in law doing pest control.  We're going to have to find our own insurance.  Of course, now that we've met our deductible we get to switch insurance.  Murphy's Law, right?