Thursday, August 28, 2008

Sean's Open Heart Surgery

On July 31st, Sean, age 14, went in for his 3rd open heart surgery. It was going to be a routine thing...they would put in a valve where he didn't have one (human or pig, whatever fit the best) and tighten up the tricuspid valve that leaked like a sieve. But routine is not what we got...

While trying to attach the heart/lung bypass machine, the surgeon nicked his femoral artery and he bled into his abdomen. The anesthesiologist, seeing something had gone wrong, injected him with brain protecting drugs. The surgical team raced to get the bypass machine hooked up to his chest instead. His blood pressure/oxygen to the brain was down for 5-6 minutes.

Because of this issue, they decided to chill his body for 18-24 hours to prevent brain swelling. This was done by attaching a device called "Arctic Sun" to his body, (see pictures here: and cooling him to 31 or 33 (I truly can't remember) degrees centigrade. Touching him was horrific, as he was so cold and rigid from the device and the drugs they had him on to keep him from shivering.

On the 2nd day they began to warm him up. The warned us that often the hypothalamus tries to overcompensate as the body warms, and his did. His temperature shot up and his blood pressure was up and down in a totally random, really scary way. I went home that night afraid we were going to lose him.

The next day, however, I discovered that an angel had been sent to care for him as his night nurse. I had met Andrea before I left the hospital that night (my husband stayed with him at night) but I didn't know how critical she was to Sean's care.

The neurologist had told us (and Andrea) that she wanted the Arctic Sun device left on him in case his temperature kept climbing. Andrea watched him that whole night as his blood pressure climbed and crashed, and she came to believe that the Arctic Sun device (even though it was off) was still making him feel chilled and that because of this he was fighting the cold and underneath all the drugs he was shivering. So she made the decision to take the device off, against the recommendation of the neurologist.

When I returned the next morning, it was to a totally different child. You could see that he had relaxed. His blood pressure was back to normal. His temperature was still fluctuating a bit, so Andrea had put a cooling blanket underneath him in case he needed to be cooled down. From this moment on, Sean started to make improvements.

He began to come out of the drugs and started making eye contact. He began answering questions we asked him with appropriate hand movements. (Waving, thumbs up, and also head shakes).

Andrea was followed by another angel nurse named Deanna. Deanna was not to be outdone by Andrea, and against recommendations decided that Sean needed to be off the ventilator. She began by turning down the ventilators breaths and forcing him to breathe instead of the machine. She came on shift at 7AM and by 4PM that afternoon she had him off the ventilator.

At that point he asked us in a tortured whisper if he could go home today. We had to tell him no. But we also gave him a list of things that once he could do, he could go home. He tried to climb off the bed that instant to get started, but we told him no, that people would have to help him with stuff for awhile.

That very day PT came to work with him and he got to sit up in a wheel chair for 5 minutes. That exhausted him and he slept 4 hours. But it was a beginning!!!

The next day he was moved out of PICU and into an intermediate room. He actually walked halfway there with the PT team. And that was just the beginning of him completing his list of things to be able to go home.

One of the most difficult things he had to manage was learning to swallow liquids again. The attempts choked him. He was only allowed thickened liquids to drink and pureed food to eat (which gagged him). But he drank and ate what he could, working hard on his list of tasks to accomplish to get to go home.

Over the weekend we were able to take him outside to the garden on the grounds. We also took him to the cafeteria with us every time. Part of the time he walked, part of the time he rode. He was finally able to go to the bathroom unsupervised. He managed to eat something that wasn't pureed. And finally, on Monday morning, he swallowed some Sprite without choking!!! We were on our way home at noon that day.

Sean is working with Physical Therapists, Occupational Therapists and Speech Therapists through an organization called "Rehab Without Walls." These women are fabulous and they are making great progress with Sean in walking, self care, posture, going places, and talking. They will also go into the school with us to meet with all of his teachers/counselors to be sure he has what he needs to have a successful school year. The team that is working with him thinks he is a fabulous teen and they all love working with him.

At this point in time, we have no doubt anymore that Sean will make a full recovery. At his follow-up appointment on August 21st, I was able to see his new valve functioning in his heart, and the ring around the tricuspid valve that tightens it, in his Echo cardiogram. His EKG looks almost normal. Truly he is a walking miracle!!!!