It's been loooooong week, and it's only Wednesday.
But, cuteness first:
Sunday Night:
 |
| Wes' reaction to his first taste of ice cream. |
We spent 6 hours Monday at the lab and other doctors' appointments.
Lab draw went well: one stick, no crying, no tears, not even a flinch.
Then we had the long awaited appointment with the neurosurgeon about his open fontanel.
I realize it is brain surgery, but we waited for over an HOUR in the waiting room.
Then we saw the medical assistant. Then the nurse. Then the Nurse Practitioner.
FINALLY saw the doctor after another hour in the room.
Anyway, the Nurse Practitioner felt he may have a slight developmental delay, because he is not putting himself into a seated position and not pulling up on things.The doctor said nothing about this, and basically said that he wasn't worried about his fontanel being open. It can be open for up to two years. But, since he is a specialist, he was obligated to do a MRI to make sure that there was nothing inside his head that was causing the bones not to close (ie cyst)So then we headed over to outpatient imaging. I have to admit that I was pretty impressed that they were on time. In the past, that has been another marathon wait.Weston did GREAT during the scan.They swaddled him tight so he couldn't wiggle around--didn't care. In fact, LOVED it.Put his head in this plastic cage-like contraption--so what?Stuffed the sides of the cage with these foam block to keep him from moving his head--booooring!He was awesome. If you have never had a MRI before, they are LOUD.I guess he has been conditioned, having lived with her
his entire life. LOL.
So then the waiting started...
Heard from Julie (transplant nurse) that his ALT (a liver enzyme) continued to be elevated. But everything else in the liver panel was normal.
Then we waited to hear what Dr. Fishman thought.
and waited
I gave them a little jingle this afternoon. Seems as though both Drs. Fishman and Goss (transplant surgeon) think that he has something viral going on. I guess something in his CBC tipped them off.
They want to keep everything the same, and then recheck on Wednesday.
Ugh.
I'm a little frustrated because he is darn near 4 months post transplant and should be off of his steroid now. But, since his labs have been funky this whole month, we only got one step of the weaning done. Once that nasty steroid goes, it takes two pain in the butt friends with it.
On the bright side, we are changing one of his mega pain in the butt meds to a ONCE A MONTH inhaled treatment.
Yes, so long grape smelling Bactrim, all 11mLs of you.
(if you are not versed in mLs, that's almost half an ounce)
Our Monday, Wednesday, Fridays will be so much more pleasant once you are gone.
But, the waiting doesn't stop there.
We are still waiting to hear about the MRI.
I think this is God's way of telling me that patience is a virtue which I am seriously lacking.
PS: The Daddy only has 6 more days of school before summer break. IT'S TAKING FOREVER!
