Tuesday, April 10, 2012

CHOP Visit

I wanted to keep yesterday's post strictly about celebrating Easter so I didn't mention anything about our trip last week to CHOP.  But I've gotten a lot of questions from friends about the trip, so I need to share.  Yes, we had another visit with the doctor's at CHOP, but no, we don't have any new news to share about Stephen's transplant just yet.  The visit turned out basically to be a pretty routine doctor's office visit except that we were able to meet with both one of CHOP's nephrologists, Dr. Amaral, and the GI doctor that has been and will continue to follow Stephen's liver, Dr. Wen. 
Our appointment wasn't until 2pm, so we left in the morning and came back the same day.  And it actually worked out great.  We made it up to Philly in just over 2 hours so we had time to grab some lunch and take a walk around University City, the area of the city where CHOP is located as well as the University of Pennsylvania.  It was good we did because we found some restaurants and shops and a big CVS that's within walking distance to the hospital.  We know at some point we'll be spending lots of time there, so it's good to get familiar with the area.  Oh and I found a coveted Starbucks within walking distance too :)  Even when I worked in downtown DC and my employer provided FREE Starbucks coffee, I wasn't a Starbucks addict, but I've somehow become totally addicted.  Probably because there's a drive-thru Starbucks on the way to the hospital and the nephrologists office :)

Our appointment with Dr. Amaral went well.  We went over Stephen's current medications, his weight and height (15th percentile for weight, 5th for height), and his dialysis numbers and talked a bit about his hypertension.  For the past few months, Stephen's blood pressure has been pretty elevated.  It hasn't become a serious problem yet, thankfully, but we'll continue to monitor it and make sure it doesn't get crazy high.  We also chatted about timing for his transplant and how long kids his age typically spend in the hospital and need to stay in the area post-transplant.  Typically, kids like Stephen stay in the hospital from 7-10 days and then once discharged, need to come into the hospital for labs twice a week (yikes!).  So we're thinking that we're probably going to need to stay in the Philadelphia area for about month; at least Monday through Friday for Stephen and I (Bill will probably commute back and forth).  We can probably come home some times over the weekends, but to travel back and forth twice a week would be a lot.  And as much as we love staying in the Gift of Life House, it's tough staying there with Stephen since he has to sleep in a pack'n'play and we're all in the same room.  And maybe, if we found an apartment that allowed dogs, we could bring Mabel with us too. But we have yet to make a final decision about that.

We also found out some really interesting information from one of CHOP's dialysis nurses!  I had asked the nephrologists how they typically suggest parent's keep the dialysis catheter out of the diaper area.  We've been struggling with this for months now and haven't really found a good solution yet since I refuse to tape it to Stephen's tummy.  He's got enough tape already on his sweet little sensitive skin!  The dialysis nurse gave me some stretchy material that I could put around his abdomen to hold the catheter up; kind of like an ace bandage that's tied together at the ends.  Billy calls it Baby Spanx :)  So we've been using a big piece that stretches from the top of his diaper up over his catheter and his g-tube.  So far so good, but I also just ordered him a peritoneal dialysis catheter belt online today, so hopefully that might actually work even better.  But in having the dialysis nurse come in, she saw that we use a whole different catheter than they use.  Stephen's catheter and all of his dialysis supplies and machine are manufactured by Baxter and they use a different company; the only  other company with a home PD machine on the market.  She assured me though that they have some sort of connector piece that will allow Stephen's catheter to work with their machines in the hospital when we come for transplant so we don't need to haul our heavy-ass machine with us when we come.  yeah!  I took it one step further though and asked her if the kids had to bring their own machines with them when they come to the ER or are admitted to the hospital; and of course they don't.   How awesome is that?!?!  Every time Stephen gets admitted to the hospital, whether it's for surgery or in an emergency, we have to bring our machine and it takes forever for the nurses to track down the right supplies.  It's a total pain.  Just another difference between a big designated children's hospital and INOVA Fairfax.  Oh, and their nurses in the hospital can actually do dialysis as well.  They were shocked to hear that we have to do Stephen's dialysis in the hospital!

But I digress....we also got some good news from Dr. Wen, the liver doctor.  The lab work she requested came back normal which means that Stephen's liver is still functioning well.  It's large and course in texture and his spleen is enlarged as well, but everything is functioning just as it should.  So we're good to go on that front as well.  She even said we didn't need to complete the special high-level liver MRI before transplant, that it was something we could do post-transplant.  So the next time we will see her will be when Stephen is admitted for transplant. Yippee!  And we were able to get some labs done before heading home, so all-in-all it was a successful trip!

Now the only thing left on our end to wrap up for transplant is the urologist appointment.  We have the appointment this Wednesday (tomorrow), smack dab right in the middle of nap time.  So it should be interesting! 

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