Wednesday... Thursday...Friday-We Are Home!

Wow. Talk about a whirlwind. 

Sorry I wasn't able to update everyone on Thursday. Things just got so busy!!! It was so different than when we had Ella in the hospital. All we could do is sit by and watch her sleep and on occasion we got to hold her. During Eli's stay, he wanted us to feed him because it was painful to lift his arm, we helped the nurses get the tape off of the IVs, and we helped him get up to go to the bathroom or for a walk. So it was much busier than what I was expecting.

I'll start with Wednesday afternoon. The day got jam packed with Eli getting a nice wipe down-type bath, sitting up in a chair for the first time, and his chest tube was taken out! Yippee! Both were hard for Eli. Sitting up was really important so that Eli could get his chest tube out. It would allow the excess fluid in his chest to exit so he could then get the tube out. The chest tube was really weird feeling and uncomfortable so we were excited to see it go so soon. Eli was such a trooper that day. You can tell in these photos that he wasn't too stoked about any of it other than matching Bun Bun in the hospital gowns that his grandma made for them. He later took a nap and played some video games!

                                               Matching Bun Bun                       Sitting up!

Getting the chest tube out. Don't look too closely if you don't like that kind of stuff. 

Also, look at Sharlene coaching him through it, she was amazing.

Playing video games with Dad, it was obvious we don't play video games 😆

                                            

Overall, Thursday was a great day! It started off really well and he looked great!

See? Didn't he look good?? He had a great night before and Matt woke up to him chatting with his nurse and telling her all about his friends and home life. He also got to watch TV in the middle of the night which was SO COOL to him 😆. His nurse even let him use her flashlight that was in the shape of a frog. He named it Greenie. Matt texted me updates throughout the night and I would wake up to Lily needing to be fed and read them. It was so hard for me not to be there. I felt like such a bad mom... but there wasn't much I could do as I needed to be there for Lily too. 

Around 10am Eli got really emotional and cried a lot, which, in turn, was really painful. He was no longer on the strong pain meds and we could tell a bit. The whole experience was starting to get to him. He told us he just wanted to go home. We were able to get him one dose of medicine and he was able to rest. He took a nap that was a couple of hours long! It was just what he needed to get ready for the rest of the day. His nurse on Thursday was really patient with him and let him rest a lot. We gave him a "bath" with wipes and a weird shower cap thing that washes your hair with no water. I don't know if you can tell by this picture but he was NOT a fan. 😆

Eli got up again and this time it was to go for a walk!  He was not so sure, but we had Penny, the therapy dog, to help lead the way! 

He was so proud of himself! And check out that gown! He picked out that fabric because it looked like his pig, Starla. 

We were then able to get the central line in his neck taken out. Eli really hated taking off the tape that held the lines in place. His nurse took 20 minutes wiping his neck with the orange oil wipes to help remove the adhesive. Matt and I kept telling her to just rip it off but she told us she couldn't because she promised Eli she wouldn't. He was really grateful for her and cried when she left. 

We were hopeful we were going to be able to go home the next day, we just needed him to poop (weird that that's a requirement, but it shows that his body is getting back to normal) and his chest x-ray needed to show that his lungs didn't have excess fluid in them...

That night Eli got up to take another walk. This time it was to get over to the window to see 3 of his grandparents and Lily holding up signs. As he saw them, he just started crying. It was all too much and he really missed them. 

                                                                                                     Can you see us in the window?👇

  

Saying goodbye to Sharlene

Fast forward to Friday... Matt and Eli got a great night of sleep! Eli took a big poop and his chest x-ray looked good so we got the all-clear to go home! Eli still had 3 IVs in so we worked on getting the tape off and Penny the dog sat at the foot of his bed to cheer him on. I was a bit more gentle taking off the tape, so I was on the job!

                       

                                        

The IVs were taken out and we were cleared for take off! Matt and I couldn't believe it! Discharge was always several hours long with Ella and now we were done in a flash. We said goodbye to our friends and were on our way. 

                                                                                            Eli and Melanie

    

We went to meet up with Lily, Grandma and BB at the airbnb that they stayed at. The reunion of Eli and Lily was so cute. 

Lily was so excited to see her brother!

We then headed home and Eli wanted Chickfila for lunch. While driving home, I looked back and Eli started crying. I asked him what was wrong and he said that he was going to miss the nurses and our hospital friends. Matt and I looked at each other and knew exactly how he felt. He experienced this really traumatic thing and yet they made it so that he missed being there. I feel like this is so telling of the impact that they all make there. They are such a gift. 

We got home and got the couch ready for a healing boy! 

 

                                                Check out the blanket 

                                                Sharlene made for Eli!

                                               Go Dodgers!

We had the grandparents over for dinner and Eli was so excited to see them in person again.

Things I've learned this time around...

-Hospitals are weird places... Filled with joy when a new baby comes into the world or someone is healed and gets to go home. But also filled with sorrow, families losing loved ones, parents watching their children suffer, and so much more.

-God has been gracious. We didn't really experience any PTSD and I know it's because God was protecting us. The only times that shook us a bit was watching Eli in pain and when there were 2 kids "coding" (dying). The sounds of the code blue alarm went off twice while we were there. The deep buzzing sound then the announcement of the code over the intercom brought back memories of the night we almost lost Ella and the few calls that we received saying that something was wrong with our daughter. Each time we heard the code, we stopped what we were doing, prayed and cried. We know what it's like to be the parents of a child that was coding. 

-Don't forget to pray for our hospital staff and the families that are experiencing the craze, no matter what hospital. I remember on occasion to pray for them, but they really need constant prayer.  I hope to be more intentional about this.

Thank you for praying for us and going through all of this alongside us. We really cannot thank you enough. 

Love,

Jillian

Good Morning.. Or Afternoon!

 

Good morning (I guess it's afternoon now!) from Eli!

He had a pretty good night last night. They are continuing to lower his medications and sedation. They were able to take him off of oxygen as well. It feels so weird having a child who is doing well after surgery 😆 He has gotten his temperature probe and catheter out. Matt took off the sticky bandages that were holding them on and Eli was not a fan. The IV trees with medication are out of his room now. Lots of things are being removed which is a GREAT sign!

We have our friend, Sharlene, as his nurse today, which we were excited about. She loves the Dodgers, so back when Ella was here, we bonded quickly! She says he is doing really well too. So that's great! 

Pray for Matt to get some rest. He was up a lot with Eli last night. He said he got about 4 hours of sleep, but only 2 consecutive hours. 

There's talk about Eli getting his chest tube out today, which would be so amazing because then he could get up and move around a little more. We are going to help get Eli up in a chair to help get the last of the fluids out of his chest tube and then he will be put into a normal hospital bed (he's been in a gurney-type bed). I think he will like that a lot more.

We had rounds with the doctors and staff and it was probably the shortest round I have ever experienced. HAHA! All is well!

He's definitely sassy and tells us what to do for him, which is a good sign that he's feeling a bit better. 

Lily continues to have a blast with her Grandma and BB. They have been playing, napping and taking walks. We are so thankful to have them. 💜

Thank you for your continued prayers! 

Love, 

Jillian

P.S. Look at this beautiful sunset from Eli's window last night. What a gift!

Seeing Our Sweet Boy

 This will probably be the last post for the day... 

We are with Eli now!

We are so thankful to be able to see Eli now! He has opened his eyes a bit and moved his arms around. He even got a little feisty and tried to take out his oxygen tubing from his nose! 

Praise God for keeping him safe! We have such an amazing team here at Sutter. We are so thankful!

Everything looks good so far. He's comfortable and just resting.

Before today, I kept praying that God would allow him to come back to the PICU without the breathing tube (extubated)because Ella was never able to successfully extubate. So this was a big fear of mine. God was so gracious and Eli was able to extubate in the operating room! I am so thankful that I didn't have to see him that way. Even though he was extubated, it was hard to come into the room and see him laying there hooked up to everything. He opened his eyes and saw us and winced and cried as if in pain... I guess that's to be expected when you have your ribs broken and skin cut open... 😳 Tears ran down my face as I watched him struggle a bit. One good thing about having to wear a mask the whole time is that people can't tell as easily when I'm crying haha!

We cannot thank you enough for praying for our boy. The hospital stay should be between 3-6 days so much shorter than we are used to! I ask that you would continue to pray for him to heal and that his pain would be managed well. Please also pray for Matt as he is sleeping in the room with Eli this week and we only got 3-4 hours of sleep last night, so he is exhausted. I would also like to ask you to pray for the boy that took Eli's previous surgery date. He has been on ECMO (life support), which we've experienced before, and he doesn't seem to be doing very well. Pray for him and his family please. It is weird not having the sickest child on the floor. Makes my heart break for his family since we know it all too well. 

Love, 

Jillian

Surgery Updates!

Hi everyone! 

Eli has been doing well in surgery. We got our first update at 9:35am and they said that they were able to make the first incision. For those of you that don't know, Eli's surgery is not through the middle of his chest. The surgeons are able to enter from his right side. It's called a right thoracotomy incision. Only a few hospitals in the US do this procedure and Sutter is one of them!!! It is less invasive, as they don't have to break his sternum to get to his heart and they go through an artery. It's pretty amazing what they do!!! We are so thankful that this surgery was available to him. 

We got the second update around 10:40 or so, and things were going well! We will get an update every hour or so until it is finished. Dr. Watanabe told us that he was thinking it would be done around 12pm.

We have seen a lot of our "extended family" (the hospital staff) today and yesterday. It's crazy how we just easily slip right back into this role. I thought it would be hard for us to be here after all that we endured with Ella, but it really hasn't been. The hardest part for me was when we were on our way to the x-ray area of the hospital yesterday and walked down the hall that goes to the operating room. We walked that hall so many times, not knowing if our daughter was going to come out alive or not, so it stirred up a little bit of emotions for me, but it was more of a longing for Ella, rather than a traumatic experience. 

The Child Life staff member that helped Eli this morning was so sweet. As I said before, Eli went into his room and on the bed were some Hot Wheels and a track to play with as well as a gift from Child Life that had Cars toys and art supplies and a Lightning McQueen pillowcase. He was so excited. This boy has been gifted so many wonderful things during this season of life. It has been such a blessing!

After we changed him into the hospital gown, we sat and prayed for Eli. He got a little teary eyed as he was feeling scared about what was coming. It was a sweet time together to just pause in the midst of all of the people coming in and out and pray for him. 

Later, he was told about all of the tubes and things he would be connected to after his surgery, but as the Child Life member was telling him about them and showing them to him on a doll, the Versed (It helps to cause drowsiness, decrease anxiety, and to decrease his memory of the surgery or procedure) really kicked in and he was barely able concentrate or talk. He was so silly and kept looking at my face and telling me, in a very slurred way, that I look like I have four eyes.😆 He also told the nurse that came in to wheel him to the OR that she looked like she had three eyes. So he was definitely all loopy! It was a little hard for Matt and I to see him like that, but we would rather have seen him like that than crying and scared. I am still picturing how he was looking at us as they wheeled him away... Can't wait to see his face again.

Currently, Matt and I are sitting in the lobby that we used to call our living room, watching the Disney movies that are on the TV. Two down, who knows how many to go! It is right outside of the PICU. 

On another note, it feels weird being here on a surgery day and not being with our parents. They were always here with us on these days in our "living room". I know that they wish they could be here with us too. 

Just got the 3rd update: They are currently "warming him" and he will be off the bypass machine in about a half hour! Thank goodness. I keep thinking about how amazing it is that these machines exist. 

We know that he is in the BEST hands (God's) and the second best hands (the hospital staff's). Thank you for all the prayers!!

Here are some photos from yesterday and this morning:

Yesterday in the Pediatric Day Unit for the pre-op things:

(He was so excited to actually get to watch Hot Wheels videos on an iPad)

Eli and Daddy playing with toys

Toys he got for being so brave during the blood draws and covid test

We had to get dipped cones at Suzie Burger!

This morning in the PDU before surgery:

Hot Wheels races with Dad

Feeling really loopy, ready to go!

Both Matt and my moms are taking care of Lily while we are at the hospital. Eli was so sad that he wouldn't see her for a while...

She's having a good old time!

Love, 

Jillian

Brave Boy!

Good morning everyone! 

Yesterday Eli got a chest x-ray, EKG, covid test, and blood work done. He was such a champ! He was so obedient and brave. 

We got to see some of our friends at the hospital too, which was fun. I feel like that is the silver lining to being at the hospital. We get to have a little reunion! 

We got here bright and early (5:30am) and Eli was greeted with lots of gifts from the Child Life Program. He got a lot of Cars gear! He even got a Lightning McQueen pillow case! 

We are now waiting to meet with the surgery team to discuss what the plan is. He is scheduled to go into the OR at 7:30am. 

Thank you all for praying! Once I get my computer, I will be able to post some photos! 

Love,

Jillian