Thursday, March 18, 2010

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.

April, Roel & Kiefer

Saturday, March 13, 2010

Kiefer's pre-op adventure

It has been a long couple of days, but Kiefer is a trooper. We got up at 4:15 am on Thursday morning so we could leave for Boston no later than 5:00 am. We told Kiefer we were going to see the doctor and he said, "No! It's closed." What a smart little guy. We arrived at 7:15 am for our 7:30am  appointment and we ended up spending a lot of the day waiting... to get a chest x-ray, to talk to the anesthesiologist, to get a tour of the CICU and the regular cardiac in-patient rooms, to talk to the surgeon, to get blood drawn, to get the echo-cardiogram. Kiefer charmed almost everyone he met. He didn't seem to mind the waiting because he had hallways to run up and down, toys to play with, books to read, a playground to play on and lots of other distractions. It's a good thing because we weren't finished until just after 3:00 pm.

We then drove to a friend's house in nearby Somerville, where we spent the night before heading back for 7:00 am Friday morning. Kiefer wasn't used to sleeping somewhere new and we had a very difficult time getting him to fall asleep. He woke up at 5:00 am and said, "I want to play!" Because Kiefer didn't want to cooperate Thursday with the ultrasound (he refused to lay down for it and cried when we asked him to), he had to be sedated for it. This meant he could have no food or drink that morning and we heard more than a few times, "I'm hungry!"  Based on what they saw in the ultrasound, they would then decide if he needed an MRI, too. Luckily, they decided the MRI wasn't necessary.

When it was time for the ultrasound, Kiefer was given a little something to relax him. The nurse handed me a syringe with a little liquid in it and sugar on the tip because the liquid apparently doesn't taste great. I let him take a taste of the sugar and then when he went for a second taste I squirted the stuff in his mouth. He spit a little out and said, "That doesn't taste good!" and "It's yucky." He got a little drowsy and then the anesthesiologist was able to put a put a mask on his face to knock him out enough to do the IV to give him the other meds. They actually scented the gas like marshmallows. Pretty clever. It was hard to watch him go limp and I cried when we left him. We were called about an hour later to let us know that everything looked fine and we could come back for when he woke up.

It took him a long time to wake up! When he did, they said he could have a Popsicle or juice since he had to fast before the procedure. His eyes were barely open and he was mumbling, but when he was asked, "Do you want a Popsicle?" he said very clearly, "Yes!" and opened his eyes wider. Then the nurse asked if he wanted, red, orange or purple and he said loudly, "I want red!" He ate the Popsicle right up. He tried to hold it himself, but I had to hold it for him because they put the iv in his right arm and he had tubes, an O2 monitor and a padded block to prevent him from bending his wrist and screwing up his iv. He asked for an orange and then a purple Popsicle, so he tried every color. He was woozy for a little while, and couldn't walk unassisted, but after about 2 hours he seemed to be back to his normal self.

We're so happy to be home for a couple of days, although we've had a lot of laundry, etc. to catch up on. We're driving to Boston tomorrow afternoon and will be staying at the Yawkey Family Inn, which is family housing for hospital patients and only costs $30 a night. It's a 10 minute walk to Children's from the Yawkey. We decided it would be no fun to have to get up ridiculously early on Monday morning and drive 2 hours to Boston with a kid that is fasting and will definitely say he's hungry and wants to eat. We have to be at the hospital at 6:30 am and they will probably do the surgery about an hour or hour and half later. I'm still kind of scared because they will be cutting my baby and messing around with his heart, but the surgeon, Dr. Emani is fantastic and we know that he will take good care of Kiefer. 

We learned about Dr. Emani and what to expect and where to stay from, Erika, a woman in Western Mass whose daughter had the same surgery as Kiefer. It is a strange coincidence how we got in touch. One of my friends has a blog about children's products and I check it weekly to see what she's reviewing and enter some cool giveaways. One of the items she recently reviewed are tutu shirts for little girls. Since we know we're having a girl, I've been checking out girl clothes... it's a whole new world for me. These tutus are very sweet and $10 from every tutu is donated to Children's Hospital Boston. I checked out her site, Tutu Pour Mon Deux, and that's when I learned that Erika's daughter, Maeley, had had an aortic coarctation just like Kiefer and was operated on by the same surgeon. I sent an e-mail and quickly got a response from Erika, and she has helped us feel more at ease before heading to Children's. Children's has been great to us and it is amazing how they take care of children from all over the world. If you have a little girl in your life, consider ordering a tutu shirt. It will make the little girl happy and help other children at the same time!

Roel and I would like to say thanks so much to you, our family and friends, for the well wishes and prayers. We feel very lucky for the support and love... it has helped us be strong for Kiefer. We're feeling confident that things will go well on Monday. We shall keep you all posted.

April, Roel & Kiefer