Thursday, May 17
The cardiology team as well as a representative from the GI team met early Thursday morning. They discussed Eli for an hour (I later joked with Dr. Parikh "only an hour" to which he replied with a smile "well, maybe an hour and fifteen minutes"). Basically what they need before proceeding further is to know what type and severity of liver disease Eli has. The best way to do that is through a biopsy. While he's under the anesthesia for that, the team wants to proceed with a heart catheterization. Eli doesn't necessarily need to have that done right now, but if he's sedated anyway, it would be a good time to do it. And the information they glean from that will be helpful. So that's really all that we got from them that day. And that's okay. It makes sense that they can't plan for what they don't know. The hospitalist team got busy trying to schedule Eli for both of those procedures. Getting all that coordinated takes a lot of time and we didn't hear anything else about it the rest of the day. Eli was in a pretty good mood all day. He took a long nap in the middle of the afternoon, but when he was awake he's very much himself. He's being silly, getting more comfortable with the staff, and wanting to play more. We both happened to have shirts that say "HUSTLE" so he insisted we wear them together today.
|Mommy with her handsome little man as we both wore "hustle" shirts|
|This is what happens when I don't take my phone to the bathroom with me.|
|Working on some drawings as we wait for our supper tray|
|Goofy boy balancing our nighttime movie on his head.|
|Ending the visit with Ashley by doing SnapChat videos. I love how snuggled up to her he is and the big smiles on their faces. She's brought us many meals and helped provide a comforting distraction over the last nine days.|
Friday, May 18
Another good day for Eli. He ate pretty well, drank more, and played a lot. After lounging around for a couple hours in the morning, we went to the playroom where there was a Project Sunshine representative in there. Project Sunshine brings creative arts materials to pediatric patients. Eli stayed in there for two hours. He painted a birdhouse, strung beads on a pipecleaner and made a bracelet, painted a suncatcher, painted a clipboard easel, and painted a plastic cup (they gave him gold coins to keep in his cup). After that we came to the room to order his lunch. While we waited for lunch we took turns hiding the coins around the room for the other to find (we're still looking for one!). After lunch, he went with the art therapist. The art therapist and Eli had been planning this for a couple days, but our timing with each other was always off. Finally it was working out for him to go with her. They used shaving cream, glue, and food coloring to make puffy paint in baggies. Then they snip off the corner of a baggie and squeeze the paint out to create their drawing. Eli drew a dragon. It's very impressive. When he came back from art therapy, I thought he'd be tired. But I was wrong. In fact, he wanted to play football. We have a small foam football in his room thanks to Zachary's baseball team. The room is too small and crowded for us to really throw a ball around, so we went just outside of our unit where there's a pretty open area that isn't typically used. I thought we were just going to throw the ball around, but Eli had grander ideas than that. He marked off our end zones, set the rules, and then we played. At times it was full on tackle football. That game lasted about an hour. I told him I was getting tired and his reply was a very non-compassionate "That's okay. Now catch this...." We finally got to come back to our room. After supper, we ended the night like we have all the others....watching a movie. We snuggle up in his bed together and watch a movie, either on our dvd player or one of the ones provided through their tv system. We often fall asleep together. I later wake up and move to the couch. Sometimes in the early morning hours, he'll call me back to his bed and other times not. I love all the snuggles! At some point in the day, we found out Eli's procedures had been scheduled. On Wednesday, May 23 at noon, he will have a liver biopsy and heart cath. More information to come on those closer to time.
|Painting the birdhouse|
|A sticker project|
|Painting his clipboard/easel|
|Playing football in the unused hallway. He's trying to get past me to score.|
|More football. He tackled me. A lot.|
Saturday, May 19
Most mornings I'm woken up about 7:30 by a cute little voice saying, "Mommy, I have to go to the bathroom" He gets Lasix through his feeding tube around 6am, so by 7:30 it's time to get up and start peeing! Today was no different. I had plans to wake early for a shower and start watching some of the royal wedding because why not? I didn't set an alarm though. Unless I need to be up for something, I've learned over the years to get sleep in here whenever I can and not make it harder on myself. So even though I was up for the day, I didn't shower yet. When the urge hits, Eli has go to quickly and he needs help. He is still monitored 24/7 by telemetry which means he basically has continuous EKG leads attached all the time. Those are attached to a small box. We have a bag for the box that ties across his body and makes it easier for him to be mobile with it, but it's still difficult for him to handle that, his shirts that are larger to accommodate his belly, and the urgency he feels with the medications. After a couple hours and breakfast, I ushered my protesting son into the bathroom for a scrub. He got his hair washed in the sink, his body washed, lotion applied, new stickers for his telemetry leads, and fresh clothes. He smelled soooo good! After he was done and settled in with the iPad, I finally got my shower.
We knew we were having some visitors that day, but we soon found out we were getting more than we originally realized. We knew Eli's kindergarten teacher and classroom helper were coming and I also knew there was a chance his principal would come. What was a surprise was that because of weather, Zachary's weekend baseball tourney was changed to Sunday only, so Daddy and Zachary got to come visit too!!!! Eli was ecstatic to find out they were coming. He's gotten much more comfortable over the last few days and the mention of home doesn't automatically bring tears. The last time they came, he was determined to not have a good time so saying goodbye wouldn't be too hard. This time he couldn't contain his excitement. They got here first. He hid from them at first but it was just so he could let them find him. He had hugs all around for his guys. It also helped they were carrying gifts from back home. A classmate and his family sent a bag of treats, matchbox cars, and activity books. A neighbor and classmate of Zachary's had sent a coloring book with crayons. Eli's Little League team had all signed a card and sent a box of baseball cards for him to open. He loved everything and took great joy in opening each thing, however the baseball cards were a big hit! He was still opening them when his principal came in. Eli had no idea he was coming, so he was thoroughly surprised to see him. It probably took Eli a minute to recognize Mr. Wildman without a tie (or rooster costume). I'm not sure Eli ever directly spoke to Mr. Wildman, but I know he showed him some baseball cards and enjoyed seeing the activity books and crayons he brought for him. Soon after Mr. Wildman was here, Mrs. Strange and Mrs. Mayhorn came. Eli knew they were coming, but was his typical shy self at the beginning. Like a typical kid who is getting spoiled, Eli whispered to me "what did they bring me?" They didn't disappoint and gave him a baggie of coins he can toss into the fountain when we go for walks (just that morning we were given permission to take him off the unit for short periods. Although we've not had time to go yet, he's very excited to visit fountain in the main hospital lobby) Eli wouldn't play, but the teachers played CandyLand on Eli's bed. Soon, Eli and Zachary were helping. We all had a very nice visit. Eli has talked several times about all of them being here. We know two of his current teachers are planning on coming this week and he's excited about that. In addition to visits, members of the school have a meal train going for Bryan, Zachary, and Charlotte and have promised to take care of mowing both our yards in Washington. All that and they take care of and teach our kids things. They are definitely teaching by example and we are so happy our boys are at this school.
We ended the day with a meal brought to us by Bryan's sister Ashley. She also brought some food for the fridge we can use for snacks or meals this week as well as some broenies Bryan and Z had to get home and get some sleep before heading out early Sunday to Z's tourney. A late night for our guys, but we are so glad they came. Eli went to sleep quickly that night, but up until a few minutes before drifting off, he was talking about all the people and events of the day.
|Peeking around from his hiding spot every time he heard the elevator.|
|Opening baseball cards from his team with Zachary|
|Helping play the game he wasn't going to play.|
|Laughing as he protests having his picture taken.|
|Eli took a picture of Daddy holding Pablo.|
|Eli and Mrs. Strange playing ball on the couch.|
|Mrs. Mayhorn, Mommy holding a squirmy Eli, and Mrs. Strange|
|Our dinner crew eating in the family room.|
Sunday, May 20
This day was the least busy we've had the entire admission. Eli was worn out from all his visitors the day before (and playing with Zachary), so after his Lasix had worn off and his breakfast was eaten, he laid on the couch to watch the iPad. Soon after that he fell asleep. I worked on some things in the room while he was sleeping dozed a little myself. We also had a visitor who brought Eli a handmade blanket with baseballs on it. I put it on him while he was sleeping. When he woke, he wanted to play Legos. When he found out B and Z were coming the day before, he asked for three things: 1) his large Lego blocks, 2) his Paw Patrol watch, and 3) Daddy's chin. He got all three! So while we were playing blocks, Dr. Parikh (his main cardiologist) came in to check on him. He built a small tower with some blocks and helped Eli finish what he'd started while we discussed a few things. Nothing major to cover, today was just a check in day for him. After Wednesday we'll have more business to cover.
When he was done with blocks, he ate lunch, then we went to the playroom. While we were playing in there, Ashley (my sister) came in. She came to stay with him a couple hours while I left. Since getting here nine days ago, I've stepped outside twice. I needed a couple hours away. I retreated to Target where I bought a few toiletries I was running out of, a couple shirts for Eli, too many clothes for Charlotte, and some things for each of the kids. I found some large clear plastic bags that zip so I bought one for each kiddo and put some stickers, silly toys, cards, and other items in there. Just a little something for Zachary and Charlotte back home to know we're still thinking of them and miss them like crazy. It's been really difficult with Charlotte. She has never been through any of this before so she does not understand why Mommy and Eli are suddenly gone all the time. I've not been able to talk to her on the phone when I get to talk with Bryan and Zachary because she just asks "Mommy, when are you coming home?" That's mainly why she didn't come with the guys yesterday, the separation at the end would be too confusing (and she had big plans with cousin Alyssa so she had a lot of fun yesterday without us). Like Eli, she has gotten better about it and just today she enjoyed a little video I sent to Kendra. She told Kendra she wanted more 'real pictures' of Mommy and Eli. Kendra said Charlotte really enjoyed it and it didn't make her sad, so there's progress! I need to send those more often.
After my Target trip, a stop at the gas station, and grabbing Taco Bell as Eli requested, I came back to the hospital. When I came in, Eli was being pulled around the unit in a wagon. He and Ashley had drawn pictures for me in addition to making lots of silly pictures and videos on SnapChat. They had fun. After we ate, he wanted me to pull him in the wagon. I'm a little meaner and told him he had to walk two laps around the unit before I'd pull him five laps. He protested, but eventually began walking. He loves circling past the nurses station whether he's walking or riding a wagon and getting their attention. After six laps (I'm meaner, but also a big softie), I convinced him we were going to start our movie early tonight so we could watch all of it instead of falling asleep. By the time we both changed, brushed our teeth, chose a movie, and got settled under his new blanket, it was time for his nighttime meds. During his medications, Bryan called with news. The little league in town is making Eli an honorary member of the 7 year old All Star team! He gets a jersey, just like the players who are on the team. He was so excited. He immediately chose #19 which is Jay Bruce's number with the Mets (Eli's favorite player). What support this boy has! Meds were finished and we snuggled up to watch Ice Age: Dawn of the Dinosaurs. Eli watched some of the movie, but he kept saying things about his baseball team and asking if we can go watch the All Stars play. We didn't make it very far into the movie before he was sound asleep.