Wednesday, September 18, 2013

That B Word

Spencer fell out of bed at 4:20 this morning.  He hasn't fallen out of bed since before we moved to this house 10 months ago.  It's been so long I don't even remember when it was, I just know it was not at this house.  He woke up whilst crashing to the floor and then wandered out to the hallway crying and calling for us.  I got to him about 30 seconds before Michael did.  He was fine, just confused and obviously upset. 
That was how the day started.
We all went back to bed, but it took me a while to fall asleep after all of that adrenaline had been pumping through my veins.  There is just nothing in the world as shocking as waking up from a deep sleep to the sound of a hysterical child in the middle of the night.
Michael went to work this morning, Elliott and I dropped Spencer off at school and then went back home to get ready for his doctor's appointment.  The appointment was at 10:30, but we got there at 10:15 as was requested.  Security had no record of his appointment and they wouldn't let us upstairs until they found it.  They couldn't find it under his name or under the department, but they finally found it under his date of birth.  With security badge in hand we headed to the 2nd floor.  Then we had to check in at the computer kiosk. The kiosk didn't have his name either so we went to the Gastroenterology counter.  They found his name on the daily schedule, but per new procedures we had to go over to Counter A to check in.  Everyone at Counter A was busy, so we waited.  Elliott wanted out of his stroller and wanted to sit on the bench with me.  They finally got us checked in so we went back to Gastroenterology where they were waiting to take us back.  Elliott saw this so he ran.  I chased him down, grabbed him and carried him into the vitals room where he proceded to freak out and cry while he was weighed (31.6 pounds), measured (33 inches), had his head measured (didn't ask) and his temperature taken (98.4).
Then we went to the exam room.  Since we were now really late for the appointment, through no fault of our own, Dr. Miloh was chomping at the bit to get in there (I don't actually know that, but he did show up really quickly).  The nurse hadn't even tracked down the blood work yet.  He came in, we chatted a bit and then he said that he had two interns (or maybe he said residents, I forget) with him and wondered if it was OK for them to come in.  I said yes and two young teenage boys entered the room.  So, either I am getting old and people in their mid-20's now appear to be 14 OR they were the 2013 versions of Doogie Howser.  I vote for Doogie, because I reject the idea of my getting old.
We talked about general development, Elliott's eating (normal toddler picky), drinking (way too much),etc, etc and then Dr. Miloh left to get copies of the labwork.  One of the 14 year old residents was very excited to take the opportunity to do some fancy calculations to show me that Elliott's liquid intake is completely within the normal range.  It reminded me of the enthusiasm that I had right out of graduate school when I was in a meeting or something and finally got to show off something I had learned in school. 
At one point we also talked about a test that blood was taken for, but isn't ready yet that will look at fatty acid oxidation.  If that shows anything abnormal we'll be referred to a metabolic specialist, but Dr. Miloh is doubtful about that because Elliott has shown no signs of a metabolic disease nor have any of the previous metabolic tests been suspicious.
Anyway.  Then we got down to the real discussion.
The labwork.
Elliott's GGT and ALT are still elevated.  His ALT number has actually gone up a little, but not significantly.  Dr. Miloh is not as concerned about the GGT, but he is rather concerned about the ALT.  Concerned enough that this is the plan:
We'll repeat all of the labs in December and if the levels are still elevated we're doing a liver biopsy.
So there it is.  The B word.  Biopsy.
Elliott's ALT has never been normal.  His GGT was normal one time (last November I think), but then the range of normal shrunk and his level stayed the same, so it became elevated again.  There is just absolutely no way that his numbers will be normal in December.  So it looks like 2014 will usher in general anesthesia and an overnight hospital stay. 
The actual liver biopsy is not that big of a deal.  It's a pretty easy procedure.  It's just all the rest of it that worries me.  The IV, the anesthesia, the not eating or drinking before the procedure, the needing to lay still for like 5 hours after the procedure (really?) and the overnight hospital stay.  No bueno.
We talked a little bit about how we were both convinced that the appointment in June was going to be the last one and we were both shocked when it wasn't.  I also basically demanded for him to tell me his career plans because I would flip out if I called to make an appointment only to be told he had left Phoenix and returned to New York.  He said that he will for sure be here for two more years, but after that, who knows.  So basically Elliott must be healed within two years.
I also asked him what he would do if a kid with no history of any liver problems had blood work done for something totally unrelated and it just happened to show elevated liver enzymes.  He said he would give the kid a chance to recover and then do a liver biopsy.  That's basically what he's done with Elliott.
We got the lab sheet for the blood draw in December, but Dr. Miloh doesn't have his schedule out yet, so we can't make the actual appointment.  I wonder if I should do it before or after Elliott's birthday.
We got home from the appointment around 11:45, ate a quick lunch and then this tired baby went down for a nap.  I had to wake him up at 2:30 to go get Spencer.  He was not happy about it.

I know that this post was a bit of a bummer. 
Here's some cheerful, random stuff so we can end on a positive note.
I found this picture from our double date with Monica and Rick on Saturday.  Michael was delighted with his beer sampler.
My mom and dad got Spencer some special M&Ms for his birthday.  They say Spencer, Happy Birthday! and Happy 6th.  And one of them has a picture of a cake.

He loves them.
And just because he wasn't in here anywhere, here is the builder/graphic designer himself.

1 comment:

Sherry said...

Yes, this post made me sad. I thought for sure all of this would be behind little E, but I know he must be in the best hands and is going to continue growing like a champ. One day when he is big hulk of a man, you'll read him these stories and both be in disbelief that he could ever have been sick. Seriously, I have seen so many stories about how the biggest and strongest men started out as the puniest little babies. And the proof for E is definitely in his weight and height measurements...that boy is thriving!!! I vote for after his birthday for the doctor appointment unless it will ease your mind any to do it before. I would just put off anything that is likely to bring anxiety to him during such a happy time. Love those pictures of him sacked out...can I blow raspberries on that big belly? :-)