Ethan's Recovery

On Saturday morning, we got a visit from the Oto team and then later on from Dr. Sie. Ethan was actually looking a little better and had some of his energy back. It was looking pretty hopeful. He asked for some milk and even a bite of something to eat. I gave him his bottle of milk and he just put it in his mouth to pacify. Dr. Sie checked him out and said he was looking pretty good and that the next time she would see us would probably be in clinic at our follow up visit in 4 months or a month after his next sleep study. To be discharged, he would need to drink enough liquids to sustain himself and that's what we're to work on. Before she explained the plan for the day, she went and grabbed our nurse so that she would be on the same page too. While Dr. Sie was still in the room, Ethan tried to take a sip of his milk and then took a bite of his food. I don't remember what it was, but she watched him to make sure that he was swallowing. He looked like he swallowed something and we were all pleased. Dr. Sie left the room. As soon as she left, Ethan proceeded to spit out the food. I went out and told Dr. Sie who was standing at the nurses station which was right outside his room. She came in and looked at Ethan. We both had a laugh and she said that he was one smart little guy because he obviously knows who he needs to impress. His IV fluids were dropped down in hopes that he would start feeling thirsty.

Dr. Sie and Ethan

Throughout the day, I kept offering Ethan liquids and food. He loves milk, but he wasn't really drinking any. He tried a few times, but I think it hurt him to swallow. Whenever the nurse came in to give him his oral pain medications, he would cry and refuse. The nurses were patient though and would squirt small amounts into his mouth from a syringe until he'd swallow and then they'd keep doing that until all the medication was gone. Around lunchtime, he seemed to get excited when he saw his lunch tray and looked it over. He tried something, but decided it wasn't worth it. I eventually got him to eat a whole container of yogurt and he didn't cry when he swallowed it down. My mom came and brought me some lunch (Ton Po Po) and ate with me. She also brought Ethan a banana and he said he wanted it. She cut up some small pieces and mixed it with yogurt. She gave him one bite and he said he was done. She then tried to just give him yogurt and he did eat that. Grandma also brought Ethan a new Thomas the Tank toy, a boat named Captain which Jonathan picked out for him as well as 5 new matchbox cars.

We also got a visit from Dr. Evans from Craniofacial. She always tries to come and visit Ethan when he is in the hospital. She remembered that I said the surgery was on the 16th and she knew he'd be staying overnight so she was in her office working and took the time to stop by and see how Ethan was doing. Dr. Evans was hired by Craniofacial as a physician when her fellowship was up. Ethan was one of her first patients that she saw as a Craniofacial fellow. We decided to stay with Dr. Cunningham though as his regular Craniofacial physician only because he was such a good doctor, knew his case, and was the clinic director.

Eventually Jonathan and Bob came to visit. I continued to encourage him to eat. We offered him some jello, ice cream, and popsicles but nothing seemed to work. He took one bite of the ice cream, but that was it. He didn't even touch the popsicle. I thought maybe he wanted to drink out of his straw cup or his Tupperware sippy (the old fashioned, non spill proof kind) so I showed Ethan the cups and he wanted his sippy. I asked the nurse if we could thicken his milk since he seemed to eat the yogurt fine and can take the thicker medications after initially protesting each time. She brought some rice cereal. I thickened his milk but again he took one sip, swallowed, and said all done.

He also wasn't sleeping. I know he hadn't really fell into a deep sleep since he had surgery, which was over 24 hours ago. He eventually began to get grumpy. Jonathan and Ethan played with their toys, but Ethan eventually got to the point where he needed to sleep. I thought taking him for a walk might help since most of the other times I have walked him through the hospital in a stroller, he's fallen asleep. I asked for a stroller earlier in the day, so I had the nurse unhook him and we were off. Mom, Bob, Jonathan, Ethan, and I all walked to the playroom. My intent was to walk Jonathan there and then leave to take Ethan on a walk, but when we got to the playroom, Ethan saw the train table and wanted to get out. I didn't even have his shoes or socks on. After he cried because he couldn't play, I asked the worker about being in bare feet. She said they usually like patients to wear socks at least but they didn't have any extras so go ahead. I put Ethan at the train table and he played a little bit. I left him there with mom and I went to play with Jonathan and Bob. I heard Ethan cry a bit but didn't think anything of it and continued to spend time with Jonathan. Eventually I went to check on Ethan and my mom was holding him in her lap. She said that he was so tired that he actually started to fall asleep playing at the table and fell backwards a bit. Luckily grandma was there to catch him. I took him, washed his one hand off and put him back in the stroller. He was unhappy, but he was going to sleep whether he liked it or not. I walked around with my mom for a bit trying to show her the construction site, but I couldn't find a place to see it really well. I took her to Giraffe 5, but you can't see the site because the roof from the floor below sticks out. Oh well. We walked her out and then I proceeded to walk Ethan around. He kept asking to walk by the windows by the Starbucks. He really seemed to like looking out the windows, so back and forth we went. He finally fell asleep, but just as he did that, I noticed that every time Ethan would take a breath in, he opened his mouth really wide. He continued to do this so I walked back to his room and showed the nurse. While he was still in the stroller, she hooked him up to the oxygen saturation monitor to measure his levels and they were inconsistently dropping under 90.

At the train table.

Jonathan having fun in the playroom.

Notice how his mouth was wide open. Even though the bottle was near his mouth, he didn't have it in his mouth because he was opening his mouth wide when taking a breath in. This is not normal behavior.

Eventually, Bob and Jonathan came back up to the room and stayed a while. He brought the chair over near Ethan who was in his stroller sleeping on and off because whenever Ethan would wake up, he'd want someone near him. I took the opportunity to eat some dinner before they left.

What a picture! It was so sweet how Jonathan and Daddy fell asleep together in the chair. I couldn't help but take a picture :)

Jonathan saying goodbye.

After Bob and Jonathan left, Ethan continued to fall into a deep sleep on and off. His oxygen saturation levels continued to drop and it became very worrisome, especially with the way he was breathing opening his mouth so wide. During one of his episodes, the nurse turned him onto his side and his levels returned to normal. I put him back into his bed and tried to keep him on his side as best as possible along with giving him blow by oxygen, which consisted of a tube being put by his face. After a while, the nurse talked to the attending physician on the unit and she came by to talk to me. She didn't think it was unusual for a small child to be doing this considering the circumstances. I guess T&A surgeries are usually done on a 2 year old since docs usually like to wait until a child is older, however, in this case it was deemed necessary and also given his history and small airway, she thought all the swelling was somewhat blocking his airway so keeping him on his side would be best. I actually felt better after talking to her. She ordered the IV fluids to be turned back up to full strength since Ethan wasn't taking in hardly any fluids at all. There was some fluids in yogurt, but he didn't drink hardly anything out of his bottle. A respiratory therapist also came in to evaluate Ethan and she agreed that keeping him on his side really seemed to help.

Julie our nurse came in after everyone left the room and told me I should get some good sleep too. She said that she would take over during the night trying to help when Ethan woke up. That was great because I ended up sleeping pretty well that night. Julie only woke me up once at 3am when Ethan was messing around with his IV and she needed me to hold him while she went to get some tape to re tape the IV. He had pulled the red sock off earlier while he was awake and she didn't put the sock back on after he fell asleep. Now he was pulling at it. That was more like him :)

At the end of the night, I was feeling very emotional. I felt like a failure because I couldn't get my kid to eat. I tried so many things and the nurses kept asking if I had any more suggestions, but nothing I did seemed to work. It really made me feel like I had failed. I was also frustrated not because we were in the hospital still, but because he made no progress. He even went backwards in a sense because he wasn't breathing well, which was one thing he needed to be doing before discharge, but I was really frustrated because his IV drip was back on full which is where we started the day.

-Dina