Sunday, February 10, 2013

My Life, A Roller Coaster

You'd think I would have learned my lesson by now and post the good results of one thing before new issues come up, but apparently I haven't.  So, I guess I'll start where I last left off and go from there...

On Sunday, January 27th we drove to Utah.  We experienced all variations of winter driving conditions on the way down.  I was glad to have Josh driving and especially grateful for all wheel drive!  When we arrived in Tremonton there was tons of snow and it was drifting over the roads and sidewalks.  Josh spent most of the week plowing and shoveling snow as his parents were gone on a cruise to the Bahamas.

Annabelle and I left on Monday and drove down to Riverton where Annabelle would be having her scans.  PCMC was booked full and couldn't get a sedated MRI scan scheduled for several more weeks so we went to Primary's outpatient satellite clinic in Riverton.  We stayed the night in a motel and enjoyed swimming in the pool and snuggling while watching TV in bed.  Tuesday morning we headed in for scans.  Annabelle did great, except she really did not want to wake up after the MRI.  We weren't in any hurry so I let her sleep for quite a while, but after being there for over 4 hours, I was ready to get going!  She was so peaceful I hated to pester her but they made me wake her.

After having labs drawn and the MRI done, we headed for x-rays.  I always look at the x-rays when they are taking them to see if anything jumps out at me.  I was relieved that when they did the ones of her skull, it looked normal and didn't appear disfigured where the lumps are.  When we finally left the clinic we grabbed some (very late) lunch and stopped at our friends, the Pender's, house.  We love the Pender family and it was just what we needed.  Annabelle perked up and played with Jackson and Hailey and then didn't want to leave.  Then we headed to a different motel up by PCMC.  The weather was bad and our appointment times were at the worst times for traffic so it was much easier and less stressful for us to just stay down in the SLC area instead of driving back and forth to Tremonton.  Of course we missed Josh and Layla, but they were having their own fun time back at the in-laws.  It was just like the good old days for Layla playing with all the toys at her "crib house".  That's what she calls grandma and grandpa's in Utah.

Wednesday morning finally came and Annabelle and I headed to PCMC.  Clinic wasn't very busy at all and it was nice to not have to wait forever and prolong the anxiety and worry!  Dr Bruggers had good news for us.  All of Annabelle's scans looked good and she was declared to still be in complete remission.  The lumps on Annabelle's head are not connected to the bone, and although Dr Bruggers did not know what they are, she felt confident that they weren't cancerous.  If they do get any bigger though, she will need to have them surgically removed and tested.  It would be a relief to have them gone and not wonder anymore, but not having to stay in Utah for the procedure was nice.  Annabelle hates to miss school and was anxious to get back!  Her white blood count was closer to normal for her and her other labs looked good, with the exception of her liver enzymes.  Dr Bruggers brought it to my attention but said that she sees it often enough, she didn't feel there was any need for concern.

We drove home on Friday the 1st of February and I have never been so relieved to be home.  Everything was supposed to be good and I thought we'd have a break from scans for the next 3 months.  Silly me.  I should know better than that.  Annabelle had a routine endocrinology check-up scheduled for Wednesday the 6th.  When we were getting ready to leave that morning, Layla was really whiny and said she didn't feel well so Josh offered to keep her home with him.  That turned about to be a very good thing!

Dr Bailey is the pediatric endocrinologist that comes to Missoula every other month.  She is managing Annabelle's thyroid care and tracking her growth, or lack of.  She was going over Annabelle labs from early January and mentioned that her liver enzymes were high and that concerned her.  I told her they were much higher last week in SLC but that Dr Bruggers wasn't worried.  Dr Bailey felt around on Annabelle's belly and thought her liver could be enlarged so she sent us for more lab work and an ultrasound that afternoon.  Annabelle was not impressed that she couldn't eat anything until after the ultrasound, but she's such a trooper!  Dr Bailey called me later that afternoon with the results.  Her labs actually looked better, which was good.  The ultrasound didn't show any issue with the liver but that her bile duct was enlarged.  What??? How strange is that!  Dr Bailey was very concerned with this and spoke with Dr Hall, our pediatrician, and was turning us over to her since Dr Bailey is only here for a week at a time.  Dr Hall called me Thursday morning and said she wasn't too worried but that she would call me later in the day after she got the official radiology report.  When she called she told me she had been researching and reading literature about this and finally called a gastrointestinal doc at PCMC in SLC.  Of course she couldn't get a response from anyone that day and Dr Hall was leaving for vacation for a week.  Just my luck!  She then called Dr Bruggers and now she is supposed to be tracking down a GI doc at PCMC to see what we do next.  They told me that I probably wouldn't hear from SLC until this next week, so the waiting game continues.

The fun just never ends around here!  I hate that it seems like so much drama all of the time, but with Annabelle's history, we have to be extra careful and look into anything that is abnormal.  The biggest fear is that her bile duct is enlarged because of something (possibly a tumor) pushing on it and backing up the flow of bile.  It could also be from some kind of obstruction, such as a gall stone that passed into the bile duct, but there wasn't anything noted from the ultrasound except that they couldn't actually see the end of the bile duct on the images.  A normal bile duct measures 2 mm in width and Annabelle's measured 6 mm.  It seems like such a small issue but obviously it could actually be a BIG issue.  Annabelle feels fine other than being extra tired lately and having had several infections in the past couple of months.  I'm anxiously awaiting the call from SLC and hoping they'll at least order some more imaging so we can know for sure if there is something we need to address or if just waiting is okay.  The not knowing is the hard part.

I promise I'll update when I know more, but until then, please continue to pray that we can get the answers that we need so that our minds can be at ease.  Thank you!

Oh, and I forgot to mention...Layla has croup again.  The poor girl just can't grow out of it!  This is the 4th time this fall/winter season and I'm so done with sleepless nights.  Ugh.

1 comment:

Rachel said...

Oh my gosh Sally. What to say? I'm so sorry. :(