It Just Takes Time

Monday morning came around and I found out that Ethan did much better overnight, having had no desaturations at all. An ENT team came in first thing in the morning to check in on us. I could definately tell it was a work day as the hospital just seemed more alive. I was able to say goodbye to Julie as she came in to do shift change. She would not be coming back tonight if we stayed another night, but she did really enjoy working with us and she told me to let her know how Ethan was doing. After that, I did manage to fall back asleep for a while. I eventually saw Ethan begin to stir, so I went and sat in the chair next to his crib. I watched a bit of tv and checked my emails and Facebook before he woke up. I tried to sleep in the chair too, but didn't get very far on that when Ethan woke up. He seemed to be in a better mood, though he seemed pretty tired still and just laid there for a while. He looked at me to make sure I was there, but didn't seem too interested in doing anything.
Dr. Sie came into the room around 8:30 am and we talked about how things went overnight. She seemed happy with his breathing since it became more stable on the steroid. She planned on sending Ethan home on a steroid taper, which would go for about a week. You can't just go off the steroid cold turkey. My mom says it does wierd things to you. She felt confident that he did better because of the steroid and he should be out of the woods. Now we are one step closer to going home again and today was about getting him to drink fluids. He would get his IV turned off today in hopes that all the fluid would go out of him and he would start feeling thirsty again. He would also get his next dose of steroids in the evening around 8:00 pm if we were still here. Dr. Sie looked in Ethan's mouth and told me that the swelling under his tongue looked better too. His tongue was still a little bit out of place, but much better then it had been the morning before. We both agreed that we were on the right track. If he could intake enough liquid of any kind today, we might even get to go home.

I looked under Ethan's breakfast tray and he had gotten some milk, so I gave that to him. Again, he didn't really drink anything right away. I did tell him that if he drank enough milk today, we could go home, but being 2 years old I knew he wouldn't understand. I think telling him made me feel like I was trying. I offered him some food too, but he didn't want anything. After trying to give him liquids through a syringe, trying to entice him with sweet juices and foods and then taking yesterday off of any pushing of fluids, I decided that today I would really try and encourage him to drink and eat. Since he wasn't going to eat his breakfast, I decided to eat it. I had been doing this for the last few days since I didn't want the food to go to waste, but I have to say that the patient food at Children's is really not that great at all. I held him for a while and we got to snuggle. While he was sleeping, Carol Parry stopped by to tell me about a family advisor opportunity. Carol is one of the people who had been calling me and inviting me to do the new nurse orientation. For this project, my name was given to her by Ashley Peter, the Craniofacial Social Worker as a parent who would be a good at representing parent experience for the continual performance improvement (CPI) workshop coming up in October. She was happy t see my name on the list since she knew me and i've been through the training already. If I can get Bob to take the 24th and 25th of October off of work to watch the boys, this would be a great opportunity.

At lunch time, he saw a roll and he was interested in that. When he tried to swallow it he cried again. Poor guy. He did, however, see some cut up peaches in a cup and asked for that. I was surprised when he actually was able to chew and then swallow the peaches without crying. He probably ate a quarter of the cup before he was done. That was encouraging to me. He even drank a little too. I took him for a walk to the cafeteria so I could eat something other than his food and got a gyro. I discovered that the gyros at the grill in the cafeteria at Children's are the best thing they offer I think. I ate one yesterday and craved another one today. The sauce that they use is so yummy and the bread pita thing on the outside is so soft. It also includes 2 pieces of lamb that look like bacons trips that go inside. Simple thing, but oh so good. And the best part is that it only costs $2.70 plus tax. I ended up with that for dinner too. On the walk back, I stopped by the hospital education office and talked to 2 teachers and the manager of the education department to see about what kind of opportunities were available to volunteer as a school teacher there. It would be a normal committment like any other volunteer position other than as an advisor, but they do have volunteer teachers working in their classroom and in patient rooms if appropriate. I was proud of myself for stopping by and talking to them.

When we came back from our walk, we offered Ethan some popsicles, chocolate ice cream, yogurt and jello. He took a lick of the popsicle, but was all done with that. He wouldn't even take a bite of the jello, so I ate that and he took one bite of the chocolate ice cream. No yogurt either. Cold things were so good for him because the cold could have helped his swelling in his throat and under his tongue, but he still didn't want to swallow any of those things. It would be like me icing a sprained ankle. Same type of thing to help the swelling go down. Anyways, it was still so obvious to me that he wasn't back to himself since he usually drinks 1-3 bottles in the morning right off the bat and loves to eat yogurt

The day pretty much consisted of me holding him, trying to get him to eat/drink anything, playing with his toys in his crib or on my lap, and taking a walk. There was always milk in his bottle too, something I normally wouldn't allow, but I hoped he would drink it if it was there. I did brush his teeth on a consistant basis throughout his stay.

One one of our walks, we walked through the train section of the hospital and Ethan was looking at all the trains on the walls. This walk was too stimulating for him earlier in his stay because I was trying to get him to sleep and he was too involved looking at everything, but now he was really noticing stuff. I said, "Ethan. Do you see the train on the wall?" Then he replied back while pointing, "Train on wall". His first 3 word sentence. He then kept saying it over and over and when we went into the train elevator, he pointed to both side of the elevator where there were trains and said, "Train on wall". So cute. This later became "Choo Choo on wall". As we walked through the long hallway on train 5 to the whale part of the hospital, we stopped to look at the ceiling where there are actual trains on tracks above our heads. They aren't moving, but are pretty cool to look at. He gain would point to them every time we walked this hallway and he would say "train on wall". We also took a stroll through the gift shop, went to Craniofacial, but I didn't see anyone we knew and I didn't ask, and just people watched in whale for a while. I think Ethan enjoyed just watching people.

Ethan eventually took a nap so I went and got dinner-another gyro. Ethan didn't want to try anything for dinner, although he did drink a little bit of milk. The nurse also came in to talk to me about how we were feeling about discharging Ethan. I honestly felt a little apprehensive since he didn't want to swallow. We discussed how some children do better at home so parents want to take their kids home so they can recover better, but I was not convinced that being home was going to change his willingness to swallow. Bob is usually all about getting out of the hospital as soon as possible so I decided to call him thinking that he would convince me Ethan should discharge. After I called him, I felt even more apprehensive than I did before. As I was talking to him on the phone, the nurse came in the room so I gave the phone over to the nurse and she talked to Bob about what the doctors were saying. She told me that the ENT doctors would stop by after they visited another patient, but that after talking to them they were thinking that Ethan should stay another night due to our apprehension and the fact that Ethan did not meet their intake level yet.

I had made plans earlier in the day to meet with Kathy before her shift started at 6:00 pm. We were going to meet downstairs in the Starbucks at 5:30 pm. Of course now I couldn't leave the room because I had to wait for ENT, so I called her and asked her to come up to the room. She bought me coffee and came up for a while. It was a nice visit. She was going to be a resource nurse in her units tonight, so she was going to try and stop by later. She was really busy though and was not able to. A resource nurse is basically a nurse on call who is an extra hand and can be called upon at any time to provide extra help to any nurse who needs it.

Shortly after Kathy left, the ENT team came in to discuss Ethan's case. It was decided to keep Ethan one more night to see how he does on his intake overnight and discharge in the morning. I felt good about that plan and the nurses assured me that the discharge process wouldn't be incredibly long since all the paperwork had basically been done. With that information, I let Ethan rest, I ate some dinner, and I offered Ethan some milk and bread. He took the milk, but didn't really drink a lot.

Later on that night, I took Ethan to the playroom. It closes at 8:00 pm on weekdays, so I wanted to make sure he had plenty of time to play since this would really be the first time he could go and play there without being really tired and in pain. He had a great time. After he acquainted himself with the room, he decided to start off by painting. I got him a piece of paper and he had a great time going from one color to another painting a picture.

Look Mommy. I'm painting! This is the picture I sent out to my parents, brothers, sister in laws, and Auntie Elaine. So endearing :)

Creating his masterpiece.

All done. The final product.

After he was all done painting, he went over the the bubble table and messed around with the bubble wands. There was a young girl, maybe 12ish or so that came over and played with us. Her sister was in the hospital with a pretty serious heart condition and the whole family was currently living at the Ronald McDonald House to be close to the hospital. They way she was talking, you could tell she'd been pretty much living at the hospital with her sister for a while. Once Ethan lost interest in the bubbles, he went over to the table with playdough. He played there for a while and then ended the night at the train table. I could tell he was done because he took the bucket that had all the playdough stuff in it and cleaned up by putting everything back into it. Such a good cleaner. Obviously Bob's influence :) Once at the train table, he used his free hand to lift the bridge and then used his socked hand to hold the bridge up. I was amazed at how well Ethan adjusted to playing with one free hand. It didn't slow him down at all! A few children ended up playing with Ethan at the train table. One little girl came in after taking a swim in the pool. I could tell he was feeling better because he was talking and sharing toys with the other kids. We stayed until 8:00 pm when the playroom closed. Before we left, I got Ethan some Mr. Potato Head toys for his room. There are several cabinets full of toys that parents and kids can rent to take to their rooms. He wasn't very happy about leaving, but I was glad that he was able to enjoy himself, finally!

Playing with the bridge at the train table. Having his hand covered didn't seem to slow him down at all!

When we got back to the room, we met Jackie the new night nurse. She actually knew Julie our night nurse the last 3 nights, so that made me feel better. Her friend is Julie's roommate or something like that. When Jackie was taking Ethan's vitals, she had to also check his IV to make sure everything still looked good even though he wasn't using it at this point. The line looked good, so she tried to flush it with saline to keep it from clogging. It wouldn't flush. At this point she figured she might just take it out since he was so close to going home. I was hoping that the IV would come out, but again I wasn't looking forward to it since he has always cried during the process. When she came in to take it out, Ethan was still in his stroller. She took the sock off and started to unwrap the tape. To my surprise, Ethan reached up and began helping her. He even ended up pulling out the line by himself. I heard Jackie say something like, "I think he pulled the line out himself" and then she flipped his hand over. Sure enough, there was a lot of blood starting to come out so she quickly put a cotton ball or something over it and applied pressure. There was no crying at all. I was SO impressed with my Little E, a little suprised at how well he did, and EXTREMELY proud of him. Jackie told me that unfortunately some kids that come to the hospital to much that they get used to stuff like this. It's kind of sad to think about how much Ethan has been through in his short life. He is one special little boy and I feel so blessed that God allowed me to be his mother. Ethan continues to teach me so much each and every day!

Ethan helping Jackie the nurse take his IV out.

I put Ethan in his crib, turned on a movie, and he was perfectly content playing with his toys. I didn't have to give him Mr. Potato Head all night. Instead, I washed all the pieces. Anyone who knows me will not be surprised by this move considering how I am with germs. I didn't know where these toys had been and though I know these toys do get cleaned, I felt better cleaning them myself. It was actually kind of funny watching Ethan play at first because he hadn't been able to use his hand in 4.5 days. He moved it around as if he was stretching it out a little and then he seemed so happy to be using that hand again. He also pulled off the band aid pretty quickly after it was put on. Neither of my boys are band aid wearers.

Overall, he didn't eat or drink much at all today. He only drank about 12 ounces of milk in total, which is usually what he drinks first thing in the morning. At least it is obvious with Ethan what his normal drinking routine is :) He usually drinks 1.5-3 6 ounce bottles right after he wakes up. I was a little conerned how I was going to get him to sleep though because he seemed wide awake and it was between 9:00 pm and 10:00 pm. I eventually left Ethan in his crib playing and watching his movie while I went to the family area on the floor to get ice water. I told the nurse I was stepping out of the room for a few minutes and she said she'd watch Ethan since she had to come in and take vitals anyways. When I got to the family area, there was a mom, dad, and son sitting in there eating dinner. I noticed the little boy had an NG tube. I said "hi" to the family and we started talking. I mentioned that my son had an NG tube when he was younger and then the dad shared with me that his son, Porter, had one because he was going through cancer treatments. Apparently he was a normal 3 year old boy 3 months ago. The parents were trying to potty train him when they noticed something wasn't quite right. They took Porter to the doctor and found out he had cancer. He was supposed to go home 2 months ago, but something bad happened and he's been there ever since for a total of 3 months. During that time he has had 7 surgeries, almost losing him twice. This made me feel really sad, but it helped me to appreciate Ethan's situation even more. Yes, you can always find someone worse off than you and you should never compare your situation with someone else's. Unfortunately, I can't remember that names of Porter's parents, but they were super nice and have been through so much. I think about them often. They've even relocated their whole family (they have 3 other kids) from the Kingsgate area of Kirkland to Seattle to be closer to Children's. I shared Ethan's story with them and we just had a nice time talking to each other. During our conversation, Porter started to get tired and restless and he was put into a red wagon he had been transported in. I wanted to stay longer and talk to the family, but I started to feel pressure to get back to Ethan's room since Jackie was there watching him so I said good bye to the family and wished them the best of luck. I often tell people that i'll be praying for them regardless of whether or not I know if they are Christians and I wished I had said this to Porter and his family, but I chickened out and didn't feel it was appropriate. God please forgive me for that. As I was getting ready to leave, Porter reached his hand up like he wanted a high five. Even though I had just washed my hands in the family room in front of his parents, I know the risks of touching someone else's hands because of Ethan's situation. I told him I was sorry and I didn't think I should give him a high five unless it was ok with his parents. They suggested a fist bump and I said that that was a great idea. He smiled and gave me his fist. I fist bumped him and he gave me an even bigger smile. What a great feeling. I made his smile by something so simple. I said my last good byes to the family and gave a special good bye to Porter and left. I will remember this encounter for a very long time.

When I got back to the room, I apologized to Jackie for being gone so long and she seemed to not be upset. She was having fun playing with Ethan. I was so glad that she was seeing Ethan a little more like himself. She left and I had some time to play with him. I noticed out in the hallway that Arnie was back. This was the third night I saw him; I saw him on our second night and thanked him for giving us such a great single room. I went out and told Arnie that Ethan was doing better. He seemed very happy and came in to visit. He saw Ethan playing with his toys and said he wondered if he still had some match box cars. He came back with a stuffed Goofy doll and gave it to Ethan, which was very sweet of him. I heard him tell his colleagues in the hallway that they needed a better selection of toys for patients. Arnie made the comment that it was so good to see how much better Ethan was doing. He said he rarely gets to see kids from when they first come to the floor to when they are well enough to go home so it was great to see how much progress Ethan had made. He offered his services again and said to let him know if we needed anything. I guess he spends his shifts being a charge nurse and a regular nurse about half time each. I let Ethan stay up for a little while longer and then turned off the lights. I told him it was time to put his toys away and he was ok with that. I gave him his bottle and penguin and laid him down. Within 10-15 minutes, he was asleep. I was relieved. I got ready for bed and sat down in the chair to relax and catch up on emails and Facebook. I did that for a while. Jackie eventually came in to check on Ethan and I felt the need to tell her not to worry that I wasn't sleeping and that I had gotten some good sleep the two previous nights, so I wasn't overdoing anything. I guess I didn't want her to worry about my well being.

Ethan seemed to be sleeping much more peaceful tonight. I just prayed that come morning, he would feel like eating and drinking more. I really want him to be swallowing without pain before discharge. This would be a huge weight off of my shoulders. I don't think just being home is going to make this any better for Ethan. He might feel better being in his own environment, but I doubt it will help the swallowing. I just need to put it in God's hands and not take it back. He'll take care of everything.

So the ENT team including Dr. Tieu came in again early this morning. I swear they get earlier and earlier. I think they came in around 6:30am this morning. They just took a look at Ethan and told me that hopefully we'll be able to go home today. Ethan wasn't quite awake by the time they came in, so we didn't know how he was going to do with his eating. He neded up waking up a little while later and I asked him if he wanted some milk. He said yes, so I gladly asked the nurse to bring in a carton for him. He took the bottle and took a little sip, but just pacified for a while. He eventually began drinking the bottle in earnest and asked for another. By the time Dr. Sie came in, he had already drunk 16 ounces of milk which was more than he drank all day yesterday. Dr. Sie took that as a great sign. We talked for a bit and it was great to tell her how much of an improvement he was making. I even showed her the painting he did. She smiled when she saw it and told Ethan what a good job he had done. She also examined him and said all the swelling under his tongue was completely gone and his tongue was back in it's normal position. She said it looked like he would get to go home today. Before she left, she asked Ethan for a high five. He shook his head no. I took him out of his crib and held him and then before Dr. Sie walked out the door, Ethan decided to give her a high five.

After she left, Ethan noticed that his breakfast tray was sitting on the counter and had a blueberry muffin in it. He said, "bread". I said you want to eat the bread, the muffin? He said he did so I grabbed the muffin and put him in his crib with the muffing broken into smaller pieces on a napkin with another bottle of milk.

First solid food he ate without crying when he swallowed.

I stood there and watched him for a second and he picked up a piece of muffin and began chewing it. Then he swallowed it with no whining or crying. He picked up another piece and then another piece until all the pieces I gave him were gone and he asked for more. I was so happy to give him the rest of the muffin. I turned around and saw Dr. Sie sitting at the nurses station so I waited until she stood up and then I went out and told her the great news. She came in and looked at Ethan and watched him eating and drinking. She smiled and reminded me that it was all about his own timing and being ready. It was obvious he was ready to go home now. Before she left the room, we talked about the follow up appointment a month after the sleep study in December, which I already tried to make but her calendar wasn't open yet. We walked out of the room together and I gave her a big hug before she walked away. Dr. Sie's care for Ethan, especially the fact that she made sure her on call weekend was the same weekend that Ethan would be in the hospital shot her right to the top of my favorite doctor list. She really is the best. No wonder she made Seattle Magazines Top Doctors Hall of Fame this year for being on their list 10 years in a row!

Ethan ended up eating the entire muffin, although he made a huge mess of it in his crib. I was so happy. He even drank more milk too.

Finally enjoying some milk.

After this, we seriously started the discharge process. I asked the nurse about getting out of their quickly because the nurse the night before said she would start the paperwork so it would be ready to go the next morning since we anticipated being discharged. Of course as things go, we couldn't leave right away. Ethan began to get restless and bored of his movies and toys, so I took out the Mr. Potatohead toys I had taken from the playroom the night before. He spent a lot of time playing with them.

Potatohead Picasso

2 potatoheads. He was so proud of his work. It was great to see him smile!

After a while, Ethan started getting really bored. It was now afternoon time and we were still waiting for all the paperwork to get done.

Ethan really wanted to go home!

We had two nurses on the day shift and this time we got another new nurse who had been at the last orientation I spoke at too and she remembered me. Her mentor nurse wanted her to get more experience with discharge, so we got her. She went over all the paperwork with us and told us how to use all of his medications. Ethan would have to finish his steroid and then take ibuprofen or tylenol depending on what time it was. It was a little confusing, so she actually wrote down the times that we should give Ethan his medicines for the next 7 days. Ethan's steroid was a taper and they started it in the hospital, so he would have to make sure and take it all 10 days. While she was finishing up all the last minute things, I packed up Ethan's stuff. We had to wait a couple of hours for the prescriptions, so she had sent them to the outpatient pharmacy a while ago. I packed up the car and then Ethan's lunch came. I asked him if he wanted to eat any meatballs before we left and he said yes. He actually really like the meatballs and he kept asking for "more meatballs please". He ended up eating most of them. His new word for the day would be meatballs.

We eventually got to leave and Ethan was so happy that he waved to everyone in the hallway, even if he didn't know them. The nurses all smiled at him and waved back. It was so cute! He owned that hallway.

Front desk waiting for checkout

As we were walking down the hallway to go to the pharmacy, I heard someone call my name. It was the floor manager asking me about Ethan's meds. It turns out that the nurse had accidentally left 2 of Ethan's 4 prescriptions in his folder and they never got send to the pharmacy. The nurse was called and she apologized for the mistake. I bet she won't do that again. The pharmacy was so busy, it would take another 2 hours to fill the prescriptions. I didn't want to make Ethan wait that long. He'd already been waiting long enough, so I just took the scripts with me. We walked to the pharmacy and Ethan pointed out all the trains on the wall that he saw. He was so happy to be free!

When we got to the pharmacy, it turned out that 2 of his pain meds were filled, but one the pharmacist thought would be hard to find in a liquid format. Great. I decided to take them to Evergreen's Pharmacy since if I figured that they would have his steroid in liquid format being a hospital pharmacy.

On the way out, we stopped by Carol and Jenny's office and they were both there. Carol took Ethan for a walk down the hallways and I talked to Jenny for a few minutes. They always hear me share about Ethan as a parent advisor. They thought it was nice to see Ethan doing so much better.

As soon as we got in the car, Ethan fell asleep. He was exhausted. I talked to Bob before we left and told him I had to go to another pharmacy. It was such a nice day. I took my time driving there. It was around 2pm by now. When I got to Evergreen, they luckily were able to fill the prescription in 15 minutes and then we went home. Ethan was SO happy to be home. He got right into playing with his toys and continued his great eating and drinking.

-Dina