Kiefer's Heart Surgery

We arrived at the Yawkey Family Inn on Sunday evening at about 5:00 pm. It is a beautiful house located only a 10 minute walk from the hospital. It actually used to be a fraternity house... the frat donated it to the hospital and it is now a lovely and inexpensive place for families of patients at Boston Children's to stay. Kiefer was very excited to explore the place, but we did have to get dinner so we walked to a restaurant in the pouring rain. We were all quite soaked, but we had a good meal and when we got back, Kiefer took a warm bath. We had to bathe him with a special sponge and soap to help make sure his skin was extra clean for surgery. He enjoyed being sprayed with the hand-held shower and was quite cooperative.

After bath, we let him play in the playroom and he had a great time. There was a little girl about a year older than Kiefer who was rather shy but wanted to play with him. They eventually broke the ice and had lots of fun running around and playing. I assumed the little girl was a sibling of a patient at the hospital. It turns out that she was a patient who had just been released that day. She had open heart surgery just 5 days earlier! I was amazed! Her family had to try very hard to get her to not run. That was definitely a good thing for us to see!

Kiefer doesn't sleep very well in new places, so he really didn't want to go to sleep. I think it was close to 11 pm before he did finally fall asleep. He woke up bright and early at 5 am and was ready to play! We got ourselves ready and called the hospital security to come and pick us up. There was no way we were going to walk in the pouring rain again! Security took their sweet time coming to get us, though and we ended up getting there at 6:45 am when we were supposed to check in at 6:30 am. The good thing, I suppose, was that we didn't have to wait for anything. We checked in, they took his vitals, put an ID bracelet on his arm and off we went to pre-surgery. We had a few minutes there to play with a sticker sheet the nurse had given him before the anesthesiologist gave him some cherry flavored liquid to calm him. He spit most of it out, of course. Only moments later they told us that one of us could bring him back to the OR and handed us a surgical mask, cap and gown. I put the cap on and when I stood up for the nurse to assist me with the gown, she asked, "Are you pregnant?" I told her I was and she informed me that I wasn't allowed to go. So Roel suited up and brought Kiefer to the OR. I cried and cried. It all went so fast and it was scary to think that he was about to be cut open.

Within a few minutes, Roel was back and there we were with the sticker sheet Kiefer had just been playing with and the clothes he had been wearing. The nurse brought us to the OR nurse station, where we gave our cell phone numbers so they could call us and give us updates on the surgery and when it was finished. We went to Au Bon Pain on the hospital main floor and had some breakfast while waiting. We were both OK when we didn't think about the surgery. I occupied myself on-line and Roel read the Boston Globe. About 45 minutes later, we got a call from the nurse saying that the surgery had started. Actually, she said, "They just made the incision." Yeah. I really didn't want to know that. More waiting and trying not to think about it and an hour after that we got another call and to my surprise it was the surgeon, Dr. Emani. He told me that they were finishing up and he would be transferred to the CICU in about 15 minutes. We headed upstairs to the CICU waiting room and 1/2 hour later we were brought back to his room.

It was pretty shocking to see him hooked up to so many tubes and machines. He had a breathing tube, two ivs in his right hand, an iv in his neck, a thoracotomy tube coming out his chest and a urinary catheter. This in addition to the wires monitoring his heart rate and O2 levels. We held his hand and talked to him, but it took him a long time to come out of the anesthesia. He'd wake up a little, nod or shake his head to questions we'd ask and then he'd fall back to sleep. It wasn't until about 4 in the afternoon that he woke up enough for them to remove his breathing tube. When they did, he was so good... he didn't cry at all and the nurses were very surprised. When the tube was removed, he immediately turned over to lay on his stomach. I got into bed with him and he put his head on my lap and slept for a while. Dr. Emani stopped by and said that Kiefer was doing great. He told us that Kiefer would likely be able to drink or eat something like a Popsicle within a few hours.

I wasn't feeling so great by then. I had been having Braxton Hicks contractions all afternoon and generally didn't feel good. Certainly the stress and lack of sleep had caught up to me. I stayed with Kiefer at the hospital that night and Roel stayed at the Yawkey. Kiefer slept from about 10 pm -12 am and had a Popsicle when he woke up. He slept again from 1-2 am, but woke up quite unhappy and threw up the Popsicle at 2:30 am... a side effect of the anesthesia. That was all the sleep he or I got that night. He cuddled with me the rest of the morning until they removed the thoracotomy tube and arterial line. Because I was laying right next to him when they were removing the arterial line, I got sprayed with blood! It was nice for him to be a little less wired.

Roel arrived at the hospital at 7:30 am and I went to the Yawkey to get some sleep. When I returned at 1:00 pm, I found that he had moved out of the CICU at 11:30 am and onto 8 West to a cardiac in-patient room. He was playing with the trains in the play room and riding around in a big wheel chair cart. That afternoon, our friends Carisa and Ed (who live nearby and with whom we stayed Thursday last week) came by to say hello. They brought Kiefer some Duplo blocks and he showed them the playroom and train table. He got a little sleepy and took a nap for about an hour. Dr. Emani stopped by again and told us what one of the nurses had told us earlier that day: Kiefer would likely be discharged the following day because he was doing so great.

Kiefer got a roommate that evening--a 3 week old baby from Ecuador. The baby cried a lot and it made it difficult for both Kiefer and Roel to get some sleep that night. Kiefer slept more than Roel, but when I got to the hospital the next morning at 7:30 am, they both looked pretty tired. Roel headed back to the Yawkey for some sleep and I stayed with Kiefer. We played in the playroom for a while, but they needed to draw blood remove some of the bandages/tape and get a chest x-ray before they could make the final call about the discharge. I couldn't believe that he didn't care at all about the chest x-ray this time. I told him he was going to get his picture taken and he said, "Cheese!" when both of them were taken. He insisted that I get my pictures taken, too, so the tech had to pretend to take x-rays of me. This pleased Kiefer.

They pretty quickly let us know that things looked fine and Kiefer could indeed go home that day. The last thing to be done was to remove his remaining arm iv and neck iv. This was not pleasant. It took two nurses and me and Roel to hold him down to take out the neck iv. He screamed bloody murder. Poor little guy. When both were removed, we got him dressed, packed our stuff and headed home! It seemed strange to be leaving just two days after his surgery, but we were happy to head home.

Kiefer will see his pediatric cardiologist and pediatrician in the coming weeks and he will be on both Tylenol and Motrin for pain relief and some blood pressure medication for a little while until he heals more from the surgery. He'll be at home for the next week because daycare might be just a little too exciting for him, but after that, he should be back to his normal schedule. His scar is about 3-4 inches and we can't get it wet for at least 10 days. This is going to make bathing a challenge, but we'll figure it out.

Thanks again for all the well wishes. They certainly worked! And a big thanks to all the doctors and nurses at Children's Hospital Boston who took such good care of our little man.

Love,
April, Roel & Kiefer