Wednesday, April 30, 2014

Just Waiting

The biopsy yesterday went great and we're just sitting in Stephen's room waiting for the results. Stephen did a great job yesterday and charmed the pants off all of the nurses. He had a little bit of a tough time at first because he knew what was going on, but once child life brought him some cars and a ride-on car, he was over the moon. Plus, the "happy juice" the gave him to relax him worked great (until that set in and he was too loopy to ride his car and then he got really pissed!). The procedure was short and was actually done right in his room in the sedation unit and then he slept for about four hours until we were moved up to the floor and to his room.  And last night, he got to sleep in a big boy bed, instead of a crib, which was pretty cool. Thankfully, no falls out of the bed overnight.

Now, we're just sitting and waiting until we get some results and they hopefully send us on our way. Then it's back to York to pick up the dog and then home to Virginia.

Here's Mr. Happy in his cool pink car and with his "race car driver uniform and gloves."


Monday, April 28, 2014

Makin' Lemonade

We spent Easter this year much of the same as we did last year; at home resting and recuperating from a cold. Stephen woke up Easter morning with a nasty cough, so we decided to keep our germs to ourselves and stay home. Lucky for me, he passed his germs on to me and I ended up being the one who got it the worst. But he felt much better as the week went on and this past weekend, Stephen had a blast at his school's carnival playing games and getting temporary tattoos and then we made the trip to PA to Mimi and Poppy's house for our monthly trip to CHOP today.

Unfortunately, the trip hasn't gone completely as expected. Most of Stephen's lab work improved from the last visit (white blood cell counts, hemoglobin, etc), but his creatinine increased again. It's now been trending upward from 0.3 over the past month or two, so his nephrologist wants to do a kidney biopsy to make sure he's not having any rejection or a bout of Prograf toxicity. So we've come back to York from Pheladelphia where we'll meet up with Bill tonight and then head back to Philadlphia in the morning for Stephen to be admitted to the hospital. If all goes well, he'll have his biopsy at 11:30 tomorrow morning, have an uneventful recovery from surgery, and we'll spend one night in the hospital and then go home Wednesday afternoon with positive results.  My gut feeling is that his doctor is just being cautious and ruling out any issues and his new baseline creatinine level has increased to 0.6.  I really don't think there's anything to worry about, but I loathe being admitted to hospital and hate he has to go through another surgery.  And of course, this comes right before we're set to take a few days of vacation to Florida next week and Stephen's first airplane ride. And it's even more frustrating because he's been doing so great lately and looks so healthy!!'s always somethin'! 

Here are some pictures from Easter and getting ready for the Easter bunny:

Stephen grew almost 1/4" from our last visit to CHOP in March and is finally tall enough to ride his bike!

Easter, take 2! 

Monster truck at the York Revolution baseball game. This was taken 2 seconds before we almost got his by a fly ball.

Mimi and Poppy's neighbor, Mr. Dave, has a cool red tractor that Stephen loves and he was finally brave enough to ride the tractor with Mr. Dave. He's been wanting to ride it for over a year, but was too scared to get on it every time Mr. Dave came over. But not anymore!!

Friday, April 11, 2014

Beautiful Day Today

Just got back from a trip to a local park/farm this morning and wanted to share some pictures. Stephen LOVES Frying Pan Park Farm and the second we pulled in the parking lot he started shouting "Mommy, get me out!" It's such a gorgeous day and there were a lot of baby animals to see. Hope everyone had a wonderful weekend!

Tuesday, April 8, 2014

Health Update

I have some new news about Stephen's blood work/labs that I thought I would share.  Late last week, CHOP got the final results of Stephen's viral studies from our visit on March 26th, and it turns out that Stephen has picked up cytomegalovirus (CMV).  CMV is one of the big viruses that doctors monitor before transplant and then closely after transplant.  It's also one of the viruses that are checked in the donor prior to transplant.  It's a common virus that is spread through the community and shows itself as a common cold, cough, or fever, but for transplant patients who are under a lot of immune suppression, it can cause serious damage to the transplanted organ.  For 6 months post-transplant, while Stephen was under a lot of immune suppression, he was taking a medication called Valcyte, which prevented CMV.  And CMV, along with EBV, is checked routinely at transplant clinic (if you remember, Stephen got EBV pre-transplant and spent some time in the hospital fighting it off and it ultimately caused his transplant to be re-scheduled at the last minute). 

Thankfully, when it was really critical right after transplant, Stephen did not get CMV, but, his blood work showed copies of the virus this last time.  They're low numbers at this time, which we're happy about and for right now, the only course of action is to stop his CellCept and start the Valcyte again and check his numbers at the next visit.  So, we're just swapping one medication for another and hoping that his numbers will decline in a few weeks.

I've spoken with the transplant coordinator and doctor at length about this because the acronym "CMV" is a scary one, but it sounds like valcyte is a great treatment and if for some reason, it doesn't work, they can administer an IV medication as an infusion (one he's had in the past for other infections).  But Stephen seems to find away to kick these viruses to the curb without too much hassle.  He's kicked EBVs butt and BKs butt, so I don't think CMV will be any different.