Ethan's fourth surgery happened on Wednesday March 2, 2011. This surgery was to repair his g tube hole that had reopened and was leaking really badly. Everytime he would drink a lot of liquid, a lot of it would come out of the hole and soak his clothing. Eventually, food starting coming out of the hole as well. This surgery was orginally scheduled to occur on January 25th, but he got sick and it had to be rescheduled. Check in time was 9:45am and the surgery was scheduled to begin at 11:00am. The hardest part of the whole experience this time was the few hours before we got to the hospital. Ethan is used to waking up in the morning and having milk first thing from his bottle. He could only have milk until 3:00am and of course he was asleep. I tried to hold off dinner until late, but it didn't seem to make a difference. He was allowed to have water, apple juice, 7-Up, or unflavored Pedialite until 7:00am. He didn't wake up until 8:10am. When he woke up, he had an empty bottle. He tried to drink from it and then handed it to me. I told him he couldn't have any milk and he threw the bottle at me. We continued to play this game for the remainder of the time we were at home on and off. I kept trying to give him toys that he really liked to play with including some of Jonathan's toys, but that would only last a few minutes and then he'd remember he was hungry again. We finally left for the hospital, but traffic was so bad that we went north around the lake. Ethan slept the whole way there. Once we got to the hospital, he woke up. I carried him into the hospital, but when we walked through the doors, he started to look very worried. Luckily, we didn't have to wait too long in the surgery center waiting area. He was scheduled to go to the ICU after the surgery, so we went to the green area for pre-surgery. As soon as we started stripping him to be weighed, the tears and crying started. He was NOT a happy camper. Not only does he recognize the hospital, but I think he recognizes the pre-surgery rooms too. Nothing good happens when he is there. Because he was crying so much, the anesthesiology intern that was assisting in Ethan's surgery came to check on us and thought he might need an anti-anxiety medication to help calm his nerves. If he got it, then I wouldn't get to go back to the OR with him because he wouldn't need the same type of anesthesia. Luckily, he calmed down after I picked him up, he calmed down. I was able to wipe him down with the pre-surgery wipes, but I was not able to put the gown on. The nurse said that was alright since it would just come off anyways during surgery. Ethan was also breathing very loudly this morning, so the nurse asked if he was sick because he did sound like he had a cold. I told her that this was normal for him. Dr. Waldhausen came in and met with me before the surgery as well as Dr. Bozenburg, the anesthesiologist that was going to do Ethan's intubation. I was told he was the best and on loan from South Africa. He was a very nice man and obviously very good since he didn't have any problems.
Ethan in pre-surgery holding Pengiun and wrapped in his blanket to help him feel better. He was able to take both into the OR with him.
Penguin got a name bracelet around his neck so the OR staff would be able to identify him.
I was able to carry Ethan to the OR. He was ok until I laid him down on the operating table. The nurse immediately put the mask over his mouth. In a way it was better he was crying because he was breathing in the gas in more deeply. It took him less than a minute to fall asleep. I thanked the nurse and Dr. Bozenburg and was walked back to the pre-surgery area.
After I gathered all of my stuff, I went to the ICU desk and got a pager from them. I didn't get one from the surgery center this time because he was scheduled to go into ICU after his surgery. I then walked outside and called Bob. It was raining, but reception in the Whale area of the hospital is very spotty. I gave him an update and then went to move the car from the whale parking lot to the parent parking lot in giraffe. Once I did all that, I walked through the hospital to the cafeteria and figured I should eat lunch before I get paged. I literally got to the cafeteria entrance and my pager went off. I couldn't believe it. It had not even been 45 minutes. I thought maybe the ICU was calling to give me an update. I called their extention and they told me that Dr. Waldhausen wanted to talk to me. I went back to the ICU waiting area and met Dr. Waldhausen. He told me everything went very smoothly, including the intubation. It felt so great to have one smooth surgery, FINALLY! We'll take 1 out of 4. It's good momentum going into the next few years off before he has his jaw surgery. I thought there might be a possiblity that Ethan would be released that day, but they wanted to keep him for observation even though things went so well just as a precaution. The decision hadn't been made whether he would go to the ICU or not. Dr. Waldhausen is such a nice man and a great surgeon. Before he went back to the surgery center, I thanked him and asked him if I could give him a hug and then I gave him a hug. It just felt so good to have this situation over and done with. I then went to the cafe for lunch. KISS FM was doing a fundraiser for the hospital and was broadcasting from the cafe so it was very crowded. I had just enough time to eat a phalafel and call Bob before I was paged again. I went back to the ICU who told me that Ethan was going to the regular floor and not the ICU. I got the room number and headed over there.
Ethan right after he came to the room from recovery.
When I got the the second floor of giraffe, there was no one at the desk so I went to the nurses station. The charge nurse greeted me and was a little surprised that I had gotten there so quickly. She said that they weren't expecting him since he was supposed to go to the ICU and had no regular bed reserved. Luckily, he was able to get one. The nurse walked me to his room (the door bed in 2024), but it was not ready yet. I went to the waiting area for about 10 minutes and then she came and got me to tell me his bed was ready. We had a roommate that was about to be discharged. I waited for about a half hour or so before Ethan came up to the room from recovery. I was surprised that he was awake and so alert. In the past he has taken 24 hours to completely return to his normal self. He wasn't by any means himself when he came to the room, but he was a lot more alert then I had ever seen him right after a surgery. He was not allowed to eat until 2pm so I held him for a while until he fell asleep. He also had a nerve block where the repair took place on his tummy.
Ethan wakes up from his nap and finally gets to eat.
The repair job.
The doctors wanted to gradually begin Ethan on a feeding schedule to make sure he could keep things down since his tummy was involved in the surgery. He was allowed to start with pedialite, but only 2 ounces every half hour. He sucked down the first 2 ounces right away and was able to wait a half hour. After the second 2 ounces, Ethan was a little more restless. I was able to hold him off for about 15 minutes and then the nurse said to go ahead and let him eat as much as he wanted as long as he could keep it down. In all, he sucked down 14 ounces of pedialite and kept it down. For his next feeding, he was able to drink a little milk. Once he could prove he was able to keep milk down, he was able to try some real food for dinner. His nurse Molly ordered him a special dinner with soft enough foods that he could eat. While we waited for his dinner, Molly brought him some yogurt and applesauce. He was very happy to have strawberry yogurt. His special tray arrived around 7pm. He got some mashed potatos, chicken and fruit. He loved the mashed potatos and ate a little bit of chicken. It was a good start on his eating.
Bob and Jonathan arrived at the hospital around 6:15pm. They had a wonderful Daddy/son day together. They got to go to Bellevue Square and play in the kids area, found out Learning Quest closed down (which was a little disappointing for Jonathan because he liked to go there and look at all the toys), play at the Lego Store, and have a Jamba Juice. He got to finish his day with daddy down in the inpatient playroom at Children's. When they arrived, Bob went to the cafeteria and picked us all up some dinner and then they went to play. Some UW Husky football players were there visiting in the playroom and one tried to talk to Jonathan, but he acted very shy. Bob thinks he was a little intimidated becaue he'd never seen a human so big before. While Ethan slept, I went down to visit. Two of the players, James Atoe and Colin Tanigawa made shirts for the boys. I had the players sign the shirts and take pictures. They both were so nice and I showed them a picture of Ethan since he couldn't make it down to the playroom. I guess these players come quite often to visit the children at the hospital. Such a great thing and the players look like they were having fun interacting with the kids too. On a side note, a hospital staff member came into the playroom with two young boys and walked them over to a playroom staff member. Bob heard one staff member tell the other staff member that the boys needed a break and distraction because their sister way dying. The sister, we guessed was about 8 years old. So sad. The last time Ethan had a surgery, I saw a family standing around a bed and I later saw them in the hallway crying. When you see something or hear something like these stories, everything gets put into perspective and I am reminded how lucky we are that Ethan's condition is not life threatening and he is overall a healthy little boy. At times we think Ethan's condition is frustrating or terrible, but then we are reminded that things could have been so much worse. I know that you aren't supposed to compare your life to someone else's life or in this case kid to kid, but we really are very fortunate that Jonathan is happy and healthy and that Ethan is such a happy, healthy boy who is living with a syndrome that can be treated.
Bubble time.
Lining up cars.
James Atoe and Jonathan holding the shirt James made for him. What a cheesey smile :)
Colin Tanigawa with the shirt he made for Ethan.
Ethan eating yogurt. His first taste of real food after the surgery.
At about 10:30pm, we got a 9 month old roommate. I was holding Ethan. I heard the nurse talking to the parents. In a bit, the nurses were going to come in and do some very unpleasant things to our neighbor such as put an IV in so I decided to just hold Ethan until all that was done. I knew there would be a lot of crying and no sleeping for Ethan. He got a dose of tylenol and then we waited since our nurse told us in about an hour people would be coming in to work on our neighbor. As we waited, my friend from church Kathy Wells came to visit. We ended up on her floor. she is normally a charge nurse and couldn't work on Ethan, but tonight she was kind of a utility nurse, on call to any nurse that needed help in several different units. We talked for a while. It was a nice to get a break. Kathy has come to visit Ethan on 3 out of his 4 surgeries, only missing one because she was on maternity leave.
We waited and waited and continued to wait for a while. I decided to put Ethan down since he'd fallen asleep already. It was around 1:30am in the morning. Of course as things go, the minute I put Ethan down is when the team showed up to start working on our little neighbor. Of course. Well, it wasn't very long before our little neighbor was crying and it wasn't long after that when Ethan woke up poor guy. He was so groggy, probably wondering what was going on. At this point, Kathy came back and apologized. She stayed with us for a little bit and visited with Ethan, now awake. As soon as he saw Kathy, he sat straight up, perked up, and wanted her to hold him. It was so cute.
Kathy and Ethan at 1:45am visiting.
Around 3:30am, we were finally able to get some sleep. Everything with our neighbor finished up and everything calmed down.
Ethan woke up around 7:30am and was very hungry. He sucked down a couple of bottles and was ready to go on with his day. We had several visits from doctors and nurses. One visit was with the general surgery doctor who was on call. Dr. Waldhausen was not in this morning, so we got a visit from one of his colleagues. This doctor, Dr. Micah Jacobs, told us that they wanted to see how Ethan would do on his eating and if all goes well, he'd get to go home after breakfast. The incision was looking very well. Soon after that, we got a visit from the general surgery nurse practictionor who was in the operating room with Ethan, Cathy Bollarro. She came in and told me from her perspective how everything went. She wanted to stop by and see how he was doing. I really appreciated her visit. She introduced me to another of her colleagues, Nicki Burns, who later came to visit Ethan and discharged him.
As we waited for Ethan's breakfast, our CNA Toni came into the room. She was the same one we had when we got here. She was standing over Ethan's crib looking at him and I thought I heard her say, "She's beautiful". I asked myself if I heard that right and she said it again. I told Toni that Ethan was in fact a boy and she said, "With that pretty face?". I was in a bit of disbelief to be honest since she had cared for him the day before to, but of course never changed his diaper since I did it. I do believe though that people taking care of Ethan should at least know the most basic information about him such as when gender is this child!!!! She was a nice lady, but this made me loose a bit of confidence in her.
Ethan's breakfast came around 8:00am. He had some eggs, cheerios, oatmeal, peaches, and applesauce but he really wasn't that interested. He ate some eggs, oatmeal, and fruit but not a lot. He was more interested in his milk. I later gave him some yogurt. I also got a call about what he wanted for lunch and I ordered him some things that I thought he would really like-mac 'n cheese, an avacado, applesauce, etc. I asked the nurse to bring us a stroller for Ethan first thing in the morning because I knew he would get bored fast. I held him for a while after breakfast. He just sat on me for a while, snuggled, and fell asleep. Our nurse, Kathy (not my friend), would come in from time to time and check on us. She'd also tell us that she was still working on getting him a stroller but the hospital was so busy that she was having trouble. That's understandable. I just can't believe the hospital was so full that kids were getting treated in the hallways of the ER and tranfered to other hospitals. This was according to our little neighbor's mother who came over to our side to use the community sink in the room. She saw us sitting there and asked what was going on with Ethan. I always wonder what's wrong with our roommates, but I never have the nerve to ask. I just don't believe it's appropriate to ask that. Not everyone thinks that way obviously. She was a nice enough lady though who's had a rough go with her son. His stomach was distended and he's had several surgeries along with a g tube placement that had to be redone.
Eventually a stroller showed up. Of course Ethan was asleep. I saw the man they call the "Milkman" too. He was on our floor dressed in his cow outfit delivering milk to kids. Well, I eventually went to get some lunch and while I was at the cafeteria, the radiothon was again taking place. I decided to buy a Children's Hospital tote bag from the volunteer group and later on a drinking cup from the gift shop. When I got back to Ethan's room, the nurse had put him in the stroller. He apparently had woken up upset and she was going to let him hang out with the big girls (the other nurses). He seemed to become happy when he saw me so Kathy fed him some yogurt so I could eat, which was nice of her. After I finished eating, I fed him his lunch. He ate a good majority of his mac 'n cheese, applesauce, and a little avacado (although I tasted it and it didn't taste normal). I guess the hospital keeps their avacados frozen and an unfrozen plain avacado is just plain gross.
Ethan after lunch drinking his bottle.
"Yeah, I get to go home!"
After lunch, we went for a walk around the hospital. Around 2:00pm, we were given the green light to go home. One of the general surgery nurses came and talked to us and since the discharge paperwork had been started already, we could get out of their fairly quickly. We had to go over the paperwork, which included home care instructions and pick up Ethan's pain medication which was just Tylenol. $3 for the whole bottle. Pretty cheap. We also went to visit Paula, the lady who checks you in on the day of your surgery who thinks Ethan is just the cutest thing. I of course agree :)
I got everything packed up, Ethan got one more dose of Tylenol because he was a bit touchy, and he got his IV out. We left Children's at around 3:30pm. It was so great to go home and Ethan was playing and being his normal self immediately. He was sure happy to be home and see Jonathan. Once home, he never needed another dose of pain medication. Thank you so much for all your prayers and support. It feels so good to have a completely successful surgery under our belt. We should have no more surgeries for several years now.
-Dina
With The Shat himself!
With Brent Spiner (L), and Jonathan Frakes (R)
With Bruce Boxleitner
