Just 24 hours after Ethan's surgery, he was ready to leave the hospital. This is so amazing when one considers just how much was done during this latest surgery. We figure Ethan's surgery wrapped up between 6:30pm and 7:00pm. By around 6:00pm the following day, he just perked right up and was ready to go home from the hospital. This after a REALLY rough night and an iffy morning and afternoon. This seems to be Ethan's norm though considering he perked right up almost 24 hours after his G-tube insertion surgery, where he stayed even longer in the hospital.
The following is my experience with Ethan and some of the infomation Bob has already posted.
We arrived at Children's at 2:45pm June 3 after dropping Jonathan off with my Mom. My Dad met us there. Ethan was a very happy boy this whole day and he loved looking around at everything at the hospital. The three of us took some "before" pictures of Ethan.
Ethan and Daddy.Once we were called back to the pre-surgery green area, we had to get Ethan ready and "meet with all the players involved" as they put it. We met with the nurse that would be with Ethan during the surgery, Dr. Hopper the plastic surgeon, his fellow Dr. Combs, the Ear, Nose, and Throat fellow, and the anesthesiologists. Dr. Julie Humsi was one of them (are anesthesiolgists doctors?) and she was the one who explained everything to us. The anesthesiologists are the ones who made the decision whether or not I could go back with Ethan while he was going to sleep. Ethan was clapping at grandpa and really happy. My friend Christy showed up right before Ethan was called back to the OR.
Once we were in the OR, Ethan put up a really good fight. He was looking around and playing for a few minutes, but once he realized that something was about to happen, he started crying. The anesthesiologist put the mask on while he was still sitting up and he kept pushing it away with both hands. Eventually he laid back and his eyes rolled up into the back of his head. He was still screaming though for a few more seconds and he eventually calmed down a little. His body was still moving around though and I was told he was asleep but the reason his body was still moving around was that his brain hadn't caught up yet. It was very interesting watching this whole process. I am so thankful that I was allowed to be there this whole time and was not rushed out like his previous surgery. They told me to give him a kiss before I left.
We were originally told to wait around the pre-surgery area since Dr. Perkins (the ENT) was only cleaning out Ethan's ears and checking for fluid that he would come right out and talk to us. Apparently getting an IV into Ethan took longer than expected so we were told to go ahead and wait out around the hospital. We went to the cafeteria. While we were waiting to be paged, Scott and Ellen (family) showed up. It was wonderful having visitors during the surgery because it really kept my mind off Ethan. After an 1 hour 7 minutes, we were paged to return to the pre-surgery area. Dr. Perkins came and told us that his part went well though Ethan still had fluid behind his eardrums and would probably need to have tubes at a later date.
After another hour, Dr. Hopper came and talked to us for a bit. He had decided to snip the lower and upper frenulum instead of having the ENT do it. He released the lower, but thought the upper was more severe. We were not planning on releasing the upper at this time, but it had been discussed. Everything else went as planned except he was unable to fix his dimple due to the fact that it was not caused by underdeveloped muscle, but rather was "thin skin".
We also had to wait for the anesthesiologist. Dr. Humsi explained to us that they had a hard time getting the tube into Ethan's throat and explained her theory as to the cause. She also said that intibation was a problem in his previous surgery too, which was written in his chart, but we were never told this. We were told he did great with the intibation so I am glad that Dr. Humsi made us aware of the situation. This information will be important for future surgeries.
By now my brother Andy and his wife had arrived, but Scott and Ellen had left. I got Ethan's room assignment and we all walked over to the patient rooms in Giraffe from Whale. Ethan was sharing a room with an newborn. He arrived in the room around 8:30pm and was expectedly fussy. Everyone was able to see Ethan, but visiting hours had ended so they all left shortly after he arrived in the room. Honestly I was very surprised at how long his scar was. I was expecting a little "Z" shaped scar where the lip repair was, but it was longer because of the muscle repair. He was still bloody around his mouth and ears with black stitches around his mouth, blood, and black marker on the opposite side of his mouth (I thought they were stitches at first), while there was blood and steri strips where his ear tags had been. I would have started crying if it weren't for people being with us. He also looked bigger as he was pumped full of fluids.
Ethan right after surgery.
After Bob, Ethan, and I got settled in, Bob left to go pick up Jonathan. Ethan started crying on and off during this time and had that really sad sounding pain cry. If you've never heard a young child cry in pain after a surgery, let me tell you...it is a very distinct cry one that is unmistakable. I heard this cry on and off all night long. The nurse got permission to allow Ethan to suck his binky (not normally allowed after this type of surgery), but binky is his second favorite comfort only behind being with me. Around 10:45pm, Ethan took 90 mL of Pedialyte out of a bottle. The nurse was very pleased and mentioned that most children who have mouth surgery don't want to eat orally for 24 hours. This was very encouraging and the fact that he kept the Pedialyte down.
I held Ethan for hours, but finally decided to put him in the bed. He slept for a while, but cried on and off all night only sleeping well for about 2 hours. He also had arm restrains put on so he wouldn't tough his mouth, but unfortunately the restraints were way too big so his hand didn't even stick out the end. Ethan was taking small amounts of breastmilk and was keeping them down all night.
When Dr. Combs came to visit in the morning, he said that we should just watch Ethan throughout the day and see how things went. The goal for the day was pain management, which we would have to control before he could be discharged. Ethan also had a reaction the the narcotics-itching.
Ethan the day after surgery.
First time Ethan shows off is new smile.
Ethan's latch on the bottle is much improved. He loves to feed himself. What a big boy!
Slowly throughout the day, Ethan got a little more active and I got a stroller so I could take him for walks. I thought this would be a good distraction for him. He continued to take small amounts out of a bottle, but the nurse wanted to give his tummy a rest so we did not gavage the entire time he was an inpatient. The nurse said they were looking for him to only take 50% to 75% of his feedings in order to go home.
In a stroller going for a walk around the hospital. Ethan needed a distraction from being in his room all day long.
Around 10:00am, Ethan's feeding therapist Suzy Hutchinson came to visit as well as Dr. Hing and Dr. Kelly Evans who is Dr. Cunningham's fellow. Everytime we come to see Dr. Cunningham, we see Kelly (she prefers to be called Kelly) too. She's awesome! They just wanted to see how Ethan was doing.
We walked all over the hospital throughout the day as Ethan got better. He got so many comments about how cute he is. He would even occasionally flirt with the nurses. We realized that we had to give him his pain medication right on time or else he really complained. Once we realized this, the nurse wanted to make sure we gave Ethan his meds before he felt pain.
Dr. Combs came back around 6:00pm and checked out Ethan's progress. He cleaned off the blood and the wound. He taught me how to clean it and how to care for it. This was around the time Ethan just perked up. Even his nurse mentioned that this was the most active she'd seem him all day. Dr. Combs cleared him to go home at that point, though we were not being kicked out. He made sure I felt comfortable with everything.
I called Bob and told him to come pick us up at that point. We were waiting for some better fitting arm restraints and meds before we could go. While I waited for Bob to show up, I watched the Miracle Makers telethon for Children's Hospital and I have to say it was kind of surreal being at Children's while watching their telethon. Dr. Hopper and Dr. Cunningham each were featured on the show though. That was pretty cool. He's so blessed to have these wonderful docs.
When Bob showed up, the nurse did the teaching and then we were ready to leave. Ethan got his IV out and a new change of clothes and then we left around 8:30pm. We got home to find Jonathan and Bob's parents waiting for us.
Thank you so much to all the surgeons, doctors, and nurses who made this experience such positive and successful one and I am greatful for the care you gave to Ethan!
-Dina
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