Recuperation and Drinking from the Fire Hose

So today was a big day for all of us. Eddie was able to rest up a bit and recover from yesterday's procedure while Sarah and I were introduced to the wild and daunting world of organ transplantation. But before I say anything about what happened at the hospital, I want to take a minute to say thank you to EVERYONE who has helped our family over the past few days. I can't bring myself to name names because I know I would miss so many of you, so instead, I'll simply say "You know who you are and we love you!!!" We've have kind visitors, an abundance of loving emails and comments on this blog, families inviting our kids into their homes, and innumerable prayers and well wishes. We are truly blessed to know each of you and hope to return your kindnesses with our own soon.

Meanwhile, back at the ranch . . .

Eddie slept great last night and woke up to a breakfast of eggs and oatmeal (Seattle Children's may be a Tier 1 pediatric cardiology hospital, but they could work on their menus a bit). Anyone who knows Eddie won't be surprised to hear he gobbled down the oatmeal. Sarah arrived around 9:30am and walked into a room crammed with what appeared to be well-dressed high school students . . . a quick reminder that we're in a teaching hospital!

Basically, our attending physician, Dr. Law, would pepper the residents with questions about Eddie's condition and they would do their best to mask their fear and give a decent answer. It was fascinating to watch and I have to admit it felt like I had slipped into an old episode of St. Elsewhere.

After rounds, Dr. Permut (Eddie's ICD surgeon) stopped by to discuss implanting an ICD in pediatric patients and its attending risks and benefits. He was also kind enough to bring a couple samples so we could get an idea of what kind of hardware they wanted to put inside our little boy. As you can see from the picture below, these are relatively small devices, but not insignificant when you consider Eddie's size.

We are going to move ahead with the ICD and surgery is scheduled for tomorrow morning at 9:00am. It's hard to think of Eddie going into the OR again so soon after his cath procedure, but we feel much better knowing that the ICD will minimize the risk associated with arrhythmia which was a likely cause for Eddie's previous cardiac fainting episode. The surgery should last about two hours after which Eddie will probably need a couple days to recover. We hope to leave the hospital early next week, but that may depend on . . .

The transplantation evaluations . . .

We had an hour-long conversation with Dr. Law and one of the transplant coordinators about the waitlisting process and some of the realities of heart transplantation. First, Dr. Law informed us that all members of our cardiology team agreed that, considering the results from Eddie's cath, we should kick off the transplant process immediately. Yesterday, there was some discussion about waiting for genetic testing results to come back, but Eddie's pressures were high enough that waiting for another six weeks didn't seem wise.

So the first step in adding Eddie to the transplant waiting list is to complete a battery of evaluations from various teams: cardiology, infectious disease, physical therapy, even social work. The goal of these evaluations is to determine if Eddie is a viable candidate for transplantation. Basically, the thinking is that if Eddie were too sick (or too well), he wouldn't qualify and this could only be teased out by having several different groups assess his condition and then conference to make a final decision.

Happily, Dr. Law felt that Eddie was in a very favorable position at this stage . . . that he could potentially qualify for a high status on the waitlist due to his restrictive diagnosis and pulmonary hypertension, but not sick enough to require hospitalization during the wait period.

We have agreed to proceed with the evaluations since they can perform most of them while Eddie is in the hospital for his ICD surgery. Once the evaluations are complete and a decision is reached about his viability as a candidate, then we are faced with the real decision about actually adding Eddie to the transplant list. It goes without saying that we are taking this process very seriously and will make a final decision when that time comes . . . probably in the next 7-10 days.

Needless to say, Sarah and I are in awe of the patients and their families that have navigated these waters before us. In fact, we are working with the transplant coordinators to connect with families of other young transplant patients and are excited to meet several in the weeks ahead. It sounds like this is a pretty tight knit group and we are anxious to learn from them and come to grips with many of the difficult realities of living with a new heart.

So in all, we continue to feel overwhelmed and intimidated by the volume of information being thrown at us every day. In spite of that, we also feel quietly confident we are headed down the right path and are certain that we'll be guided as we make such important decisions in the coming days. And finally, it was wonderful to see the day end the same way it began . . . with a dose of welcome sun flooding into the room. We love you.