Post Surgery Setback

We have been through so many things with this little fighter from his surprise condition at birth, stays in the hospital, surgeries, the unknown...but Saturday night was one of the toughest night I have ever experienced with Ethan. I almost called Pastor Mark and Mary Beth, but it was after 9:00 pm and I didn't want to bother them, especially since Sunday was the big back to church picnic. I just sat there watching Ethan sleep. He would wake himself up and cry. He'd call for me. I'd pick him up and hold him. He'd cry some more looking at me with those big sad eyes of his and I felt so helpless. I cried a bit. I couldn't do a darn thing for him to make him feel better other than to hold him. I felt so bad and so miserable. The nurse came in and would check on Ethan and turn him into a better position if he began to drop his oxygen level (desat or desaturations).

I posted the following on Facebook:

There is nothing more heartbreaking than watching your child suffering.
Tonight my son looked at me with his big beautiful eyes seemingly to say,
"why aren't you helping me feel better momma?" as he cried and I have never felt
more helpless.

Julie the nurse told me I should try and get some good sleep so she would take over during the night and only wake me up if she needed me. I actually did end up getting some really good sleep. Julie only had to wake me up once at 3:00 am when Ethan woke up and started pulling at his IV. She needed me to hold him and make sure he didn't pull out his IV before she had a chance to re tape it. It is amazing what a good night's sleep does for you.

Ethan in the stroller hooked up to the oxygen saturation monitor.

Ethan was working so hard to breathe that he was sweating through his pillows and gown. There was even a halo of sweat on the pillow around his head when I was holding him.

Sunday morning came and I felt better after getting some good sleep. I probably got a good 7 hours or so, only getting woken up that one time Julie needed my help. Apparently Julie walked in the room around 6:00 am and found Ethan sitting up in his crib quietly playing with his toys :)

Dr. Tieu (an ENT) and his team came in early in the morning to check Ethan out and briefly discussed the situation overnight. Ethan had fallen back asleep by then. I laid back down but got up when Dr. Sie came into the room an hour or two later. We discussed the situation. Ethan dropped his oxygen levels on and off throughout the night, getting down to 77 or 79 for a second at one point. Julie told me later on that she was standing in the room and watched him drop as he slept because he was already in the 80s and when he reached his low level, he actually moved himself to a better position and brought his level back up immediately. Dr. Sie explained how Ethan did overnight and then explained to me what her theory was as to why he was doing this. So Ethan was given a steroid after his surgery and it lasts between 12 and 16 hours before it wears off. Yesterday when she came in to check on him, he looked so good because he was still feeling the effects of the steroid. As the day went on, the steroid wore off and he slowly began to decline though we didn't notice it until he finally fell into a deeper sleep which relaxed his airway causing the desats. She wanted to give him another dose of the steroid and then see how he does. If he improves, then it would tell her a lot about what was going on. She explained that she didn't give him the steroid yesterday because he was looking so good when she saw him that she didn't feel he needed another dose of it. She said no matter how well he did today on the liquid intake, we were committed to another night in the hospital because she wanted to see how he did again overnight and see if he improved. I told her that I was feeling like a failure as a mom because I couldn't get him to eat and I also told her that it wasn't that we had to be in the hospital, but his lack of progress that frustrated me. His IV was back up to full drip and now we couldn't even say he was breathing fine. She tried to reassure me that I shouldn't be feeling that way. Ethan would take his time to heal and eat and when he was ready; it would be blatantly obvious to us. Some kids just take longer than others. Well, I appreciated the effort in trying to make me feel better, but until I saw some progress, I wouldn't feel better. At this point, it was all in God's hands and all I could do was pray that Ethan would be okay.

Dr. Sie then examined Ethan who had woken up by now. She looked in his mouth and realized that he was having a severe reaction to the instruments that she used during the surgery to hold his jaw down. There was some severe swelling and redness under his tongue, which I thought looked like his medicine. She also noticed that in addition to the swelling still in his throat (although there was space in his throat and the swelling was not cutting off his airway), he was holding his tongue upright, like if we were to touch the roof of our mouth with our tongue. She said that tongue position would make it easier for it to fall into his airway, probably explaining some of his issues overnight. The steroid should help with that swelling too. She went out to get the nurse. She came in and told her about the plan for the day. At one point Dr. Sie came back into the room and I happened to be one the phone with Bob so I gave her my phone and she discussed the situation with Bob answering his questions. I thought that was very nice of her.

Ethan spent much of Sunday just sleeping. Around lunchtime, he woke up and got some milk although he didn't drink any of it. He got his steroid around 1:00pm and within 3 hours, he seemed to perk up a little. This made me think Dr. Sie's theory was right. It looked like Ethan was going to go home on a steroid taper.

Karen our nurse only had Ethan as a patient since she discharged her other patients so she was able to spend some time with us giving Ethan a bath. As she got the bath ready, I held Ethan. Just before we stripped him, he threw up. It was mucus (he didn't have anything in his system) which she said was probably building up in his throat and he finally figured out how to get rid of it. She got Ethan a little green baby tub and filled it up with water. She wrapped his IV hand in a plastic bag. I turned on his movie so he could have that while he was taking a bath. I thought the water needed to be a little warmer so Karen added some warmer water and once in, he looked like he was just enjoying being in there. All of a sudden, he began to cough non stop and then threw up again in the tub. I pulled him out and set him on a towel on his bed. Karen cleaned out the tub and refilled it. Once I put Ethan back in the tub, he was upset so we just quickly cleaned him up, including washing his hair and then I dried him off in his bed. I was so happy to have a clean boy again, especially since he had been sweating so much and his drooling was worse than ever since he wasn't swallowing. He was going through so many gowns. She also gave Ethan a pink bin for all of his toys. He had so many of them floating around his crib that she though putting them all together would be better. It was funny too because after she did that, Ethan just stared at all the toys in front of him. I guess it was the first time he had seen them all together. He didn't really play with them immediately though. He was so sleepy.

All Clean!

Looking like he feels so much better now that he was all clean. It's amazing what a bath will do!

Karen also gave Ethan 3 positioning pillows filled with some sort of liquid goo. It actually kept him on his side better than the pillows did. I got to keep these when he discharged. Karen was off at 3:00 pm and we got 2 nurses in her place. Pastor Mark ended up visiting us after he was done with the activities at church. I caught him up on the situation and we visited for a while. I told him that I almost called them last night it was so rough. Before he left, we prayed together for Ethan and for me.

Jonathan and daddy came to visit early in the day after church since Jonathan likes to go to the playroom and it closes at 4:00 pm on the weekends. They stayed a while and they hung out with us after the playroom closed. I took advantage of them being there by taking a shower. I got to use the shower in the room and it felt nice to be clean. I also got to spend some time with Jonathan. I really missed him. As they were leaving, they went to say good bye to Ethan who stood up and started reaching out, crying because he wanted to leave with daddy and Jonathan. It was so sad. I know Bob felt so guilty leaving him.

Ethan wanted to go home with Daddy and Jonathan.

My sweet Jonathan.

Walking Daddy and Jonathan out. We made a stop at Starbucks to get mommy a sweetened black ice tea. Thank you dear!

After they left, we continued on our walk around the hospital. We ran into Kathy coming in for her shift around 6:00 pm. Her shift was starting at 6:30 pm. She was going to be a charge nurse for several units so it takes her longer to do reports (reports is the term that nurses use when telling their replacement nurse coming on shift about all their patients before they go off shift). We talked for a bit and I caught her up on how things were going. She was going to try and stop by during her shift, but ended up being extremely busy. Then we continued on her walk. Ethan fell asleep and I walked him back to his room. He spent a lot of the evening sleeping. He really didn't eat anything and drank very little. At least he was sleeping. That was good. As I watched him sleep, I didn't see him breathing hard anymore, which was a relief to me. I also heard a helicopter land, which was kinda cool but it was dark so I couldn't see it very well. Our room overlooked the helipad outside the ER. I wished that it was light so Ethan could see it. Unfortunately, this meant that something bad happened to someone else.

We did have one point in the evening when Ethan woke up and was playing a little when the nurses came in to do their shift checks. During the check, Julie noticed that his IV appeared to be partially out. She had the other nurse look at it and she also thought it was coming out, so they called the IV team to come down and hopefully save it before Ethan would have to get poked again. The 2 nurse team came down pretty quickly and were luckily able to save his original IV. I thought Ethan would cry when they were messing with the IV since that is what usually happens, but he didn't cry at all. I was so proud of him. I distracted him by letting him play on my phone with one hand and they were done before he even knew it. I was a proud and relieved momma!

Julie again let me sleep overnight so she took over all of Ethan's care. I was feeling better about how Ethan's breathing was because he hadn't had any desats since the early morning. I really had to rely on God that Ethan was going to be okay and that he would start eating and drinking soon. God's always taken care of Ethan and the rest of our family and he created Ethan to be a fighter, so I needed to have faith in Him. There was no progress made in the liquid intake arena, but at least his breathing was stable all day. That was enough progress for me. Ethan was also in a better mood all day, although very sleepy. I think he really needed it and I hoped all the sleep would encourage him to eat and drink more.

All asleep on my side.

-Dina