Halloween

Zachary had his second Halloween, but his first Halloween costume :-)! We went to our church class' Halloween party and fun was had by all.  We all really enjoyed doing things a normal family gets to do on Halloween.

Last year, Zachary was home on Halloween but ended up in the hospital the next week.  (The stay lasted all the way thru Thanksgiving and Christmas.)  

Last week Zachary had two follow up appointments.  These two doctors are some of our favorite doctors at PCH.  They have incredible insight into Zachary as well as an excellent bedside manner.  The first appointment was with his GI surgeon.  Dr. Egan confirmed that his posterior is looking good and the diaper rash has disappeared.  We were really concerned when Zachary's diaper rash kept getting worse after surgery.  It took about a month to clear up, but it was a long 4 weeks.  (His shrill cries were awful to listen to when he was getting wiped.)

Second appointment was a cardio follow up.  Dr. Graziano said he's looking great right now.  We had several questions for Dr. G about the next steps for Zachary.  We need to continue with the goal to reach age appropriate or "normal" milestones (walking, talking, eating normally, finger dexterity, etc); however, as he continues to become more active, he will most liking fatigue quicker than a normal toddler.

We then asked when will he need to have his next heart surgery and what does that look like.  The doctor said it is hard to know when he will need intervention.  It is all on Zacharys time frame!  As we all know he has his own plan!   But the doctor said by the time he is around 4-6 years old we will know if Zachary is a candidate for the Fontan procedure (More research here and here).  There is a real possibility that Zachary may not be a viable candidate for this procedure because this procedure puts additional strain on the patient's GI tract.  Since Zachary has gut issues already, he may not ever get the Fontan procedure.

So what happens if he is not a viable candidate for the Fontan? Well, he probably would be placed on the heart transplant list.  Zachary's heart is not made to last a normal lifetime in its current state.  Medical technology is evolving so fast that there may be a third option that is not possible at this time.  Do we have more answers? No, i think we have more questions.... but for tonight, we rest in God's peace that covers us.  We do not worry about what tomorrow brings, it would rob us of our joy today.