Follow Ups

Today Ethan is off of food restrictions and can eat anything, including hard foods. He was really happy to be able to eat animal crackers again and have a vitamin. Hopefully this will cut down on the crying when he asks for something and we tell him he can't have it. He has actually been really good the last few days about not being too upset when we tell him he can't have something.

I also called Children's today to find out about two things:
1. Why he is scheduled to have another hearing screen
2. Why he is going to have a follow up with speech at Children's

Ethan had a hearing screen in June of 2011. That test did not go very well as Ethan grew bored quickly and stopped responding to sounds. To date, audiology has not really gotten a good hearing screen on Ethan. They know that he has both ear canals and that he has good hearing in at least one ear, however, they do not know how good his hearing is in the other ear. Since it will be 6 months in January when we go in for our surgery and sleep study follow ups, he will be doing another hearing screen. We are just concerned that he will have too many and our insurance will stop covering them. As January gets closer, we will see how Ethan is behaving and make the decision whether or not we think he will cooperate for his next test. We will also discuss this with Dr. Sie and see what she is thinking in this area.

Ethan is also making great progress on his speech. In the 3-4 weeks he was off of speech because we were in quarantine, he actually made a lot of progress working on things. Because he is doing so well, his speech therapist was talking about testing Ethan again to see where he stands and possibly discharging him from services. Children's also wants to do an evaluation, but they want to evaluate him more for medical reasons since he just had a T&A surgery. I guess they want to see how he is moving air through his airway post surgery, so Children's evaluation is more medical and the community speech therapist's evaluation is more progress related.

-Dina

A Past Due Update

Ethan came home 9/20/11 - one day later than originally hoped. That was only because we erred on the side of caution. He was starting to eat and drink and behave like his normal self by the afternoon of 9/19 and we were given the option of going home. We decided, after talking with the doctors, that it would be prudent to stay for one more night just to be sure.

As of now (9/29/11), Ethan is off all pain medications and has completed his course of steroids. He is eating and drinking normally now. Tomorrow will be two weeks to the day of the surgery and we were told that the swelling resulting from the procedure should be completely gone by two weeks.

Ethan still makes some noise while sleeping but it is by far quieter by any measure.

We have been told to continue the oxygen for a little while longer. In the mean time, we are to call Children's to arrange for an oxygen saturation monitor and to use it for one night. The next day, it will be picked up and they will review the data and let us know if we can discontinue the oxygen for good. (We have yet to schedule this).

- b

No More Medications!

Ethan has been off of all pain medications since 9/22 and had his last dose of Prednisone yesterday at 8am. The steroid is supposed to last 12-16 hours, so we are way past that point now and Ethan is still doing well. He seems to be swallowing comfortably so it appears that the swelling is very minimal if there is still any at all at this point. Praise God for his recovery! Now we just play the waiting game to see if the surgery worked to open up his airway and improve his breathing. We hope in 3 months that when he goes in for another sleep study, it will show that his sleep apnea has improved.

-Dina

Last Day of Meds

Ethan finished up his last day of the Prednisone steroid today at 8:00 am. I tried to schedule the boys their flu shots today, but the nurse said the steroid would effect the flu antibodies, so we need to wait 10 days. We have an appointment scheduled for next Friday. The steroid lasts 12-16 hours and then we will see if Ethan has any behavioural changes. I don't anticipate any changes at this point. He is doing so well. Friday he will be able to start eating all foods, including harder foods such as crackers.

-Dina

Our Own Pumpkin Patch

For the first time, I decided to try my hand at a garden over the summer. My mom bought some start ups from a teacher friend at Moorlands Elementary who was doing a class fundraiser. She gave them to Jonathan and he and I planted the garden over the summer. There were 7 pumpkin plants, 3 bean plants, and 2 squash plants. I managed to keep the garden alive for the most part. Unfortunately, I went away to Vancouver, B.C. and when I came back, the garden had caught powdry mildew. I did a lot of research and went to Molbacks to get some treatments. I didn't realize there was so much to growing a garden, but now I know. Water the garden in the morning instead of at night so the soil has time to dry out. Don't water during the hottest part of the day. Plants pumpkins spread apart so the plants have space to breathe. Don't plant the same thing in one spot year to year. There are male and female plants. The males don't grow fruit, the females do. I got a lot of pumpkins that started to grow, but then died. The landscapers also mowed through the branches that were sticking out of the garden, killing some, which we had a little talk with our landscaper about.

Next year, I plan to go to Molbacks and buy some good seeds or startups. I am also planning on expanding and Bob said he would buy me some planter boxes so I can grow more next year. I look forward to doing more research and planning. I would like to plant pumpkins again, long beans, and kale. I'll have to see what else I want to do. I also would have liked to plant some blueberry plants this year since they take a few years to really get going, but I guess that will have to start next year.

This year, I did get a few good pumpkins. One looks nice and round, one looks like a peanut, and one is still growing. These pics were taken in mid September.

Peanut Pumpkin

Nice and round. As you can see, the leave are dying due to the powdry mildew.

Still growing.

I am so excited to harvest these off when Halloween gets closer. Jonathan had a great time helpingme plant the garden and then helping me water the garden for a while. What a great mommy/son project! I stopped letting him after I started spraying the organic fungicide even though it is supposed to be safe.

-Dina

First Day Home

Ethan's first full day home went well. He continues to take his steroid and pain medications on a regular basis. His eating has returned to a pretty normal pattern for him. Best of all, he is smiling and back to his normal self. We hope that he continues to improve and we hope that his breathing and sleeping will improve. At his point, his breathing is still pretty noisy. Dr. Sie said it will hopefully improve over time.

 

Thank you for all your prayers.

 

 

-Dina

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

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

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

Ethan's T&A Surgery Day

Ethan's tonsil and adenoid removal surgery was scheduled for Friday September 16, 2011. Check in time was 6:45 am! It was early, but we preferred it to be that way so Ethan wouldn't be too upset about not being able to eat all day. I took him to the hospital while Bob stayed with Jonathan until my mom could come pick him up. When we got to Children's, I parked in the Giraffe parking lot where parents usually park when their child is staying at the hospital and there were a lot of spots that early in the morning. The lot usually gets full by lunchtime and then you're forced to park in the Whale lot on the opposite side of the hospital where the clinics are. I didn't feel like trying to move the car while Ethan was in surgery.

There was no crying when we walked in the doors and checked into the hospital. I don't know if this was because he was just in a good mood or the fact that we entered through the Giraffe entrance instead of the Whale entrance and he just didn't realize where we were. He stayed in a good mood though as we walked through the train section and over to whale where the surgery center is located. We waited less than 15 minutes before we were brought back to the pre-op area. We spent that time looking at the fish tank. Once we were in a pre-op room, Ethan started to fuss when I put him down and tried to take his coat off. He finally let me take it off and then I was able to strip him down and put his gown on without any problems after I asked his permission. I sat him in the chair with his penguin, bottle, and 5 trains.

He's all ready for surgery.

Luckily, we didn't have to wait too long in pre-op either. The pre-op nurse warned me that people might see him with the bottle and freak out thinking that he was drinking something before the surgery and I would have to let them know it was his pacifier comfort thing and it had been empty all morning. Shortly after he was all ready to go, the anesthesiologist came in with his resident to go over all the necessary pre-op stuff. The resident actually was doing all the talking, but the mentor anesthesiologist was standing right there listening to everything. I actually heard him going over Ethan's chart with the resident before they came in. They gotta learn how to interact with families somehow and Seattle Children's is a teaching hospital. I felt comfortable with all that stuff and then Dr. Sie and Dr. Hopper came in to talk about their portions. I asked Dr. Hopper if he could do anything for the scar on Ethan's stomach from the g tube closure, which had grown a keloid and was itchy. Dr. Hopper said he could give him a shot of a steroid, cortisone in there as well as inside his mouth behind his macrostomia scar, which was extremely thick and resting against his teeth where he could bite it easily. Pretty quickly after that, we were off to the OR. I was able to go back with him this time as well. I carried Ethan and he was carrying his penguin, bottle, and my phone and then the nurse asked if he would feel more comfortable if he had his trains and I said yes, so she grabbed all of them. I was surprised because the paperwork for surgeries says they can bring one item with them.

Just after he was placed on the OR table.

When we got into the OR, Ethan was so brave. I tried to grab my phone away and as you can see, he wasn't very happy with me. I gave it back to him and turned the camera on because he likes to look at himself and the nurse pushed the button on my iPhone which allows you to take pictures through the screen side of your phone so as he was looking at himself, I took a picture of him. I am so used to him crying while he is going under that he really breathes in the gas a lot and is out pretty quickly. This time, it took him a couple minutes because he wasn't crying. Eventually he realized that something was happening and he was able to kind of knock himself out of the sleepiness, but then he started getting upset and was totally out within seconds. I saw the nurse, Dr. Pittaway the anesthesiologist, and Dr. Sie all standing there ready to go, so I knew he was in good hands. This was the 5th time going through this. I was so proud of my little tough guy for being so brave!

Once I left the OR, I went to check in at the ICU desk since he was scheduled to go into the ICU after the surgery. I went to visit Carol Parry and Jenny Calhoun who are the two ladies that contact me to come and do parent advisory stuff. I also went to the Starbucks on Giraffe 1 and got breakfast. I also checked out their chapel. It overlooked the construction site, but was very relaxing. I only waited about an hour and a half before I got paged. I waited for Dr. Sie in the ICU family conference area for a short time before she came over to talk with me.

Overall the surgery went well. Dr. Sie said his tonsils were pretty large under the gum line, so she thought it was good that we took them out. She also took the top 2/3 of his adenoids, but wasn't able to take everything out. She was not able to perform the bronchostomy because she discovered that Ethan's airway is curved instead of going straight down and she didn't want to irritate his throat even more by trying to jam her straight instrument down there to look. This can be done later on in clinic if need be with a bendable instrument. She confirmed that his palate was high but intact. Dr. Sie also mentioned that she found some Parapharyngeal Banding on both sides of this throat which indicates that he has allergies. She wasn't surprised that he has a peanut allergy and she wondered if a lot of the times we thought Ethan had a cold but his only symptom was a runny nose were actually allergies. She seemed pretty concerned about this and wants us to put him on Zyrtec a month before his sleep study to allow Ethan his optimal performance while he is sleeping. The steroid injections went fine too. I also learned that Dr. Sie did the intubation since she was going down there anyways, but was supervised by Dr. Pittaway the anesthesiologist. She said it was difficult, but she was able to get it in a couple of tries.

As a side note, while we were talking in the family conference area, some lady came out of the ICU, sat down across from us, and talked really loud on her cell phone. Maybe she was oblivious, but I thought it was pretty rude of her. I would think it obvious that a parent and surgeon were having a discussion since Dr. Sie was still wearing her OR stuff, but the conference area is also not marked well and the opening faces the ICU entrance. Dr. Sie asked me if I wanted to move and she moved us to a private room down the hall to finish our discussion.

When I was done with Dr. Sie, I walked back to the ICU desk because they paged me twice while I was with Dr. Sie and realized that they were paging me because Bob's parents had showed up to check in on their way back to Vancouver, B.C. Before I left the area, I was told that Ethan was not coming to the ICU and just going to the surgical floor so I checked back in with the surgery center where I got another pager so I could find out his room assignment when it was ready. I had the pager not even 30 seconds when I got paged and was told I was needed in the PACU.

In the PACU (Post Anesthesia Care Unit or Recovery Room)

Since Bob was on his way by now, I had my inlaws sit in the waiting area and texted Bob where to find them. I then went back to the surgery area where someone brought me back to the PACU. Once there, someone pointed me to a curtain where I could hear Ethan crying, though his cry was very hoarse sounding. As I walked around and spotted the nurse, she looked at Ethan and asked if he wanted to see momma. Ethan turned around, made eye contact with me, pointed, and said "momma" in that sad, hoarse voice that he had. It melted my heart. The nurse said that Ethan was ok, but she mainly needed me for pain management. I was set up in a chair next to the bed and I held him. As I held him, the nurse noticed that he was having oxygen saturation level problems and I noticed that his whole body was moving as he breathed. It was very unsettling to see how hard he was working to breathe. The nurse mentioned that he was doing well when he first got to the PACU; he had a lot of adrenaline and was moving around crying. She theorized that as I held him, the adrenaline wore off and he relaxed, causing his airway to relax as well which is when we began having problems with his breathing. Dr. Sie was called and came to check on Ethan. She wanted him to be watched for another half hour to see how things went. Ethan was allowed to have some juice so a nurse put straight juice in his bottle. He usually gets diluted juice, but I thought full strength juice would encourage him to drink, but it didn't. Dr. Sie checked in from time to time and eventually the anesthesiologist came in as well. Dr. Sie and Dr. Pittaway along with the nurse discussed the situation and agreed that he should actually go to the PICU (Pediatric Intensive Care Unit), so the nurse had to call and get his bed back since it had been cancelled. Dr. Sie talked to me about what was going on with Ethan and why she thought he was doing what he was doing as well as reassuring me. She gave me the plan for what was next. Overall, we spent about 2 hours in the PACU.

Once Ethan's bed was ready in the PICU, Ethan was put back into the bed and pushed to the unit. I followed behind. He was put in the bigger side of the room with a nice view of the construction site. Once we were in the room, Ethan actually started to do a little better, which we were told usually happens. I told the PACU nurse that we should have come up to the PICU right after his surgery so maybe he would have done better faster! Once there, Ethan wanted me to hold him, so I sat with him in a chair for about 7 hours. I texted Bob before we left the PACU to tell him that we were on our way up to the PICU and he met us in the room shortly after we got there. He brought his laptop, which turned out to be great because we were told all of the beds had a DVD player except the one Ethan was in and he was so unhappy that we wanted him to be able to watch a movie that we had bought him specifically for the hospital stay "Misty Island Rescue", which has Bash and Ferdinand who he is obsessed with right now. Our roommate was a baby who had surgery and was getting teaching on how to take care of a child with diabetes. I think the baby lost it's kidney or something. So sad and since Ethan was crying to much, I felt really bad.

Ethan and I in the PICU.

The construction area outside Ethan's PICU window. Bob and I played with "Where's Waldo" game that Sellen Construction does for the kids on a daily basis. It's hard to see him in this picture, but he is in the far right on the blue wall.

This is the newest building going up at Children's. I heard that the SCCA, Emergency Department and the ICU are moving into the building, but I don't know for sure. Notice that there are names on the beams. Parents can write their child's name on a piece of paper and put it in the window where steel workers will put the names on the beams.

Poor Guy. So tired, but not sleeping.

During the day, we were visited by the PICU attending physician and Dr. Sie and her team. The two doctors discussed Ethan's situation and plan for his care going forward. We also had requested to see the respiratory therapist who showed us the options for a CPAP machine if we ended up having to go that route. Auntie Erin also showed up just as the team of doctors walked in. She brought Ethan a little giraffe. So sweet.

I eventually had to eat something. Ethan was brought some dinner, but it was mashed potatoes and chicken nuggets. He really wanted to eat something, but the chicken nuggets really hurt when he swallowed along with everything else. I felt so bad for him. He also wanted a graham cracker, which we knew wasn't really good for him, but we let him try it and he took a bite and cried when he tried to swallow. He was persistant though and kept trying. He eventually gave up. The nurse also wanted us to try and give him a popsicle. He did take two licks off of that, but turned it away after he tried to swallow. I didn't want to eat his food, so after Bob came back from eating his dinner, he took Ethan and I went to the cafe before it closed. Patients are allowed to eat in the PICU, but parents are not for infection control reasons. It is also for reasons of infection that parents cannot use the bathroom in the room. I also kept sending Bob out to the waiting area to call people since you can't use your cell phones in the room. As I was leaving, I couldn't figure out how to get out of the unit since I got there a back way.

While I was in the cafe eating, my dad arrived and saw Ethan for a bit before finding me in the cafe. My friend Kathy also showed up and found me in the cafe. It was a nice change of scenery to see them and I was able to just talk to them about how the day went. Visiting hours go from 10am to 8pm for everyone except parents and by now it was past 8pm. My dad and I finished visiting and then Kathy and I walked back to the ICU check in desk. You always have to stop at the desk. The lady at the desk knew Kathy who is a charge nurse in another unit, but they let Kathy back to visit for a few minutes. She was so sweet because she not only came to visit on her day off, but she bought Bob and I coffee. Kathy came up to visit us for a few minutes and while she was there, another doctor from Otolaryngology came up to check on us. Apparently while I was away, the attending unit doctor came and told Bob that Ethan might be moving out of the unit. I also had trouble finding my way back to the room. The person at the desk told me how to get there, but apparently I don't follow directions well or wasn't listening because I almost walked into the wrong room and ended up in the CICU (Cardiac Intensive Care Unit) and as I backtracked, I ran into the NICU (Neonatal Intensive Care Unit). All three units are circular in shape and are all attached to each other to make one big ICU divided into 3 sections.

Before Bob left, we were told that Ethan would indeed be transferred to the surgical unit because the PICU had plenty of rooms but not enough nurses and a couple of kids in other units needed to transfer into the PICU and needed the nurse. Bob left around 9:00pm to go pick up Jonathan from my mom's house.

Ethan did a lot of sleeping sitting up. His poor hand was placed on a board and wrapped in coban tape to secure the IV.

By 10pm, Ethan was moved to the surgical floor on Giraffe 3. The cool thing was that he actually got his own room. This was the first time he got to be in his own room. These are called isolation rooms usually used for kids with something contagious or for the more serious kids like the ones who come from the ICU. I was happy because this was less stress for me and hopefully quieter for Ethan. Whenever we share a room, I always feel bad when Ethan cries, especially in the middle of the night because I don't want him to disturb the other patient. We also wake up when the other kid is crying. When we got to the room, Arnie the charge nurse was there waiting for us as well as our nurse Julie. Arnie spent at least 15 minutes talking to me about the floor, getting to know us, and assuring us that we were being well taken care of. He was a really nice guy and we saw him 2 other nights, one was our last night and he brought Ethan a stuffed Goofy and told us how great it was to see how well Ethan was doing since they hardly get to see a patient from arrival to discharge. We also got to have Julie as our night nurse for Ethan's first 3 nights in the hospital, which was great for consistency reasons and she was really nice too.

Arnie the charge nurse upon arrival in the surgical unit in Giraffe

Julie our night nurse for 3 nights in a row.

That first night was pretty difficult. Ethan did not sleep well. He kept waking up throughout the night looking for me and calling "momma". Of course I had to get up and go be with him until he fell asleep. This continued throughout the night. At one point, I put my arm out and he grabbed it, pulling himself towards me. Then he laid his head on my arm and fell asleep. I actually debated standing there all night for a brief few minutes. I think I finally got about 3.5 to 4 hours of good deep sleep. The nurse also put a red sock over Ethan's IV so it would be less tempting to pull and thought about getting a respiratory therapist to evaluate Ethan, but respiratory team didn't think it was necessary to evaluate him at this point.

-Dina

The Road Home

It has been over 48 hours since Ethan's surgery and he is still at Children's (with Dina). He is still not eating/drinking significantly and overnight it was found his oxygen saturation levels dropped to a very low level (77 at it's lowest).

His ENT (who was also the surgeon) checked in on him this morning and determined that all the problems seem to be related to swelling in his mouth under his tongue which was due to a myriad of surgical implements that were placed there to keep his mouth open, tongue in place, etc. during the procedure.

The result of all the accoutrements that were placed in that area is that is is irritated and swollen. This means that when he reaches deeper levels of sleep, his tongue is more apt to basically flop over and obstruct his airway resulting in the depressed levels of oxygen saturation.

It was also found that when they gave him steroids to help with the inflammation, Ethan perked right up, his oxygen saturation levels improved greatly, and it was during this time he showed renewed interest in eating and drinking. About the time when the steroids wore off - that coincided with when he got much more irritable and less interested in food and liquids.

The plan going forward is to give him a shot of steroids and then watch him again during that time period. If all signs improve again, he will be sent home with a course of steroids that we can deliver (probably over the course of 5-7 days). This will help alleviate the swelling (which would disappear on it's own - but it might take up to 2 weeks on it's own).

So we are somewhat hopeful that Ethan can come home tomorrow (Monday, 9/19/2011).

- b