Updates

It was at some point after midnight in the early hours of March 28 that the blog got a lot harder to update. Cliff had slept peacefully beginning at about 6 pm March 27 just like he always does. It was great because we were in Texas Children's Hospital so any time that he slept well in a bed that wasn't his you feel lucky. It's still true today. But at midnight the nurses came in to give Cliff his IV. He hated the cold water they were giving him and was awake pretty much from that point on.

They came in to wheel him up for open heart surgery at about 6 and we said goodbye to him just after 7 AM. Although the hospital was amazing at giving updates and we never went more than about an hour and a half without hearing exactly what was going on and how things were going, the day just seemed incredibly hard.

Dr. Fraser finished the surgery at about 2:30 PM but it wasn't until about 6:30 PM that we were able to see him in the Cardiovascular ICU. He was connected to a huge array of tubes, pumps, and IVs. But bit by bit he started the multi-day process of waking up and starting to heal. By Sunday, just a few days after having open heart surgery he was able to leave the ICU and go back downstairs to the 15th floor where we had stayed before surgery. By Tuesday, when I left Houston to fly home to be with the other kids, he was standing up in his crib and starting to gain back a bit of his fun personality. Cliff ended up being able to come home to Arizona about a week later - 12 days after open heart surgery.

Since then we've just enjoyed have Cliff around. So far the initial progress reports all show that as far as Cliff's heart goes, the surgery has done a better than expected job at minimizing many of Cliff's symptoms. The surgery is not a cure but more of a first step in stabilizing Cliff. Although there are many things that can affect the ultimate outcome, including many things that aren't controlled by the heart at all, the prognosis heart-wise is that Cliff could live another 20 years and it would not be surprising. We'll take it.

Looking forward, Cliff is going to have another heart surgery in October. This surgery will be to measure the growth that has hopefully occurred and do some angioplasty if needed. Other than that Cliff continues to meet with doctors about his liver, his kidneys, and now we've added a feeding therapist to help him overcome his feeding aversions.

We are so appreciative of everyone who has helped us a long the way. We know we still have a long way to go, but it's great to see little nuggets of happiness mixed in with everything else that is going on. In so many instances our family and friends have provided those moments and experiences and we are so grateful. Hopefully, we can return the favor by updating you a little more frequently on our progress.