Tuesday, October 02, 2012

Day 178

Sorry I have not written for a while.  We actually had an ENTIRE week off from doctor's visits.  It was nice to have that break and it gave me a chance to throw Ethan a birthday party on Saturday.  It was really fun to have our family together to celebrate.

Ethan began coughing early last week, so we had to keep the boys apart the best we could until his coughing subsided.  Ethan seems to be doing better now, for the most part.  Thanks, Mom and Dad, for letting him play at your house after school.

I wish that our week off from the clinic meant that the fluid around Jacob's heart was clearing up, but after returning to the clinic yesterday, we found that it looked "the same, if not worse," according to the cardiologist, Dr. Degner.  I suspected this might be the case.  He still has cold symptoms and a sporadic low grade fever, and when I hold him I can feel his heart pounding.  This issue could be treated with prednisone (just like almost everything, right?), but considering all the complications that arise every time Jacob has been on steroids and the fact that he doesn't seem to be in any discomfort, we decided to wait it out.  We also stopped his Cellcept (immunosuppressant) yesterday with hopes that his body will be able to fight off whatever virus has been plaguing him and causing this problem with his heart (the theory being that once his immune system is no longer suppressed, it will be strong enough to fight the infection).  Stopping this medication could also backfire, however.  If it had any anti-inflammatory effect on his heart issue, then it could get worse.  And then of course, there's always the issue of GVHD flaring up again.  We are taking a leap of faith, hoping that this is the right direction.  Please pray that it is.  He got his flu shot a couple of weeks ago and is getting an ivig infusion tomorrow for some added protection.  Please get your flu shots and have your children get theirs as well!

Just in case you're wondering why Jacob still has his ng tube in, he says he likes it and doesn't want me to take it out because we use it for his medications.  He's not on all that many medications, but he is terrified of having to take them in his mouth.  As soon as this tube clogs, we'll take it out and begin the battle with his oral meds.

On a brighter note, Jacob's 6 month chimerism came back 100% T cells, NK cells, and myeloid cells, and 99% B cells.  It looks like the cells have found their new home and are hopefully here to stay. :)  Also, Jacob is off night hydration.  He is eating and drinking enough to sustain himself and switched over to oral electrolyte supplementation.  His blood counts also remain stable. :)

This morning when I was dropping Ethan off at school, he asked me why I never smile.  I thought that was strange because I've been consciously trying to smile more often because I don't want to always be a depressing person to be around.  I guess Ethan saw through my efforts.  He asked if it's because I'm always having to pick up toys.  I wish.

Here are some pictures of what we've been up to:

Playing in the front yard

Boating with Grandma & Grandpa

Ethan's Angry Birds Birthday Party

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