Hospital Stay and Mama Mini-Vacation

It's been a hot minute since I've had a chance to sit down and write an update.

After we got home from Denver- Greyson was not feeling like himself. You could tell he wasn't feel good. His skin was pale and he was just exhausted. We figured traveling took a lot out of him and tried to ride it out to see if he would recover at home. We kept a close eye on his oxygen level and his heart rate while we were at home and both numbers seemed out of whack. We got home on Monday July 11th- later in the evening. By Sunday the 17th he was still not doing the best and his levels were too low for our liking. We had a scheduled visit with his hospice LPN on Monday afternoon and when she got there we had done so much suctioning, he was breathing hard and it was labored. You could just tell he was struggling to get the air in. Our nurse called our complex care team in Madison to see what we should do. Our nurse down there was concerned but knew we were doing everything we needed to be doing. We upped his shake vest treatments to see if we could break whatever it was out of his lungs and just kept him prone on our chests as much as possible. After she left, Adam and I looked at each other and both said at the same time, he needs to go in. I called Grey's pediatrician's office but I got lost in the phone tree and was on with a triage nurse. I explained the symptoms and everything to her and she very calmly said "ok, what we are going to do is hang up, you are going to call 911 and get him to the ER immediately." With our hospice, we don't call 911, we call them. We knew we didn't need an ambulance, so we just quickly packed up Greyson's essentials and headed to the hospital that is closest to our home.

We checked in and they got us back right away. They hooked Greyson up to the pulse ox and his oxygen was in the low 70s. You want your oxygen in the 90s. So they immediately got him on oxygen and Grey was SO exhausted he just fell asleep on Adam. They decided to do a chest xray and had a machine to do it right in our little ER room. They laid a board down, laid Greyson on top of that and took the image. Shortly after the doctor came in to let us know that Greyson had pneumonia in his right lung. He also said that he noticed some scarring on our sweet boys lungs and that they were not filling up as much as they should be. The scarring could be from previous aspirations or just part of his disease progression.. but it was scary to hear his lungs were not inflating as much as they should be. They gave us the option of having Greyson admitted there or having us sent to Madison. We figured if they could treat us there, it would be easier to stay in Green Bay and be closer to home. We didn't think to pack anything like clothes or chargers when we headed in. I was snuggling Grey and they wheeled us up to pediatric intensive care unit (PICU) and got Greyson settled in his room. We were in an isolation room because they swabbed Greyson for COVID and other viruses and we were waiting on the results. Thankfully they ALL came back negative.

The first night we were there- Adam stayed with Greyson while I went home. They only had one chair in his room so we both couldn't stay. I had a headache so figured we could alternate nights with Greyson and take turns getting sleep at home. I went home around 10:30 and tried to get ready for bed but all I could think about was Grey and Adam. I have NEVER slept in our house without Greyson there. Ever. In 2.5 years. Greyson has always been in this house with me. I sat in his room for awhile and cried thinking about him laying in that big bed trying to fight for oxygen. That's when that grief wave swallowed me and I lost it. It was really difficult to swim to surface but finally I calmed down and went in our bedroom. I instinctively went to turn the monitor on and realized I didn't need to have it on tonight. I crawled in bed and got under the covers and tried to silence my brain.

I woke up around 8:30 and felt like I was so hungover- but I didn't have anything to drink the night before. I felt like garbage. I got in the shower and packed some things for the hospital. Adam was going to come home to nap and shower so my Mom came to sit with Grey and I for a little bit. When we got back Greyson was still on the high flow oxygen- trying to pop those lungs open to allow for air to get in. They had tried to wean him off a little but his body wasn't ready for that. The doctor had let us know the plan was to do his shake vest treatments every 4 hours around the clock and he would be in the hospital until they would wean him off of the high flow. Grey was exhausted and so was Adam. We made the switch and Nana and I just sat with Grey while he slept. On Day 3- we tried to wean him again but his little body was not ready yet either. I let the doctors know to just take it slow, we are fine where we are and I wasn't taking him home until I knew he would be ok at home. The hospital had an amazing Child Life Services program that brought Greyson books, a sound machine, took digital finger prints for me, made a hand mold with us, and gave us teddy bears with his heart beat recorded in them. They were so sweet with him and what a wonderful program to have. It made the hospital not feel so sterile. This children's hospital was so cool though. They had a huge wall of screens right when you get off the elevator that they would change the scene. It was interactive so it had things that would respond to you! They even played movies on it during the day. They had twinkly lights in the ceiling. One of nurses said they just updated this wing and wanted it to be more fun for kids, hospitals can be so scary that they didn't want them to be afraid. It was very touching and it was magical- I can't imagine how much more magical it would be for a child. Every door had animals on them too that showed up at night from the hallway light. Our first room had a bunny and a racoon, the second room had a fox :)

Here are some photos of the hospital stay--

This was Greyson's hospital room view- no filters on these photos.. it was beautiful!!

This was night two- poor buddy was not feeling well AT all

This was when we recorded Greyson's heart beat for his teddy bears they sent us home with :)

Starting to feel better

And on Day 6 of being in the hospital....

Greyson's friend Levi sent him this :)

This was the day after we were home. Greyson got a much needed and well deserved tubby and then he chatted with me for quite a while. It was so good to hear his coos again!

We also got our family photos back from our trip to Denver! These are all of them :) He is so gosh darn cute.

We had a follow-up appointment with Greyson on Thursday this past week with his pediatrician and after we took Grey to the Packer's pro shop on the way home. He needed a new jersey for the season and Grandpa made a good point. He needed AJ Dillion- aka QUADZILLA.. because he has massive and strong quads- like Grey! So Grey got a Dillion jersey :) It's pretty cool to be able to swing by Lambeau field on a random Thursday on our way home. I love it!

Before Greyson got sick we had planned to head back home to Michigan this past weekend. Every year on the last weekend in July they have Blueberry Fest, Outback, and Art on The Rocks. It's a fun summer tradition and it's so much fun. It's like a big outdoor market where vendors can come sell their items from pottery, to jewelry, to shoes, to fruit/veggies- everything. Adam wanted me to go to spend some quality time with my sister and parents and said he would stay home with Grey. Adam's Dad offered to come be a second set of hands so I agreed and left my boys for the weekend. Adam sent me these cute pictures Friday- the day of Blueberry Fest. Auntie Denise got him this shirt from her most recent trip to Finland.

It says mustikka which means blueberry in Finnish :) (it sounds like moose-te-ka)

Friday my sister and I headed into Marquette. We arrived around 2pm and went to grab lunch. We unpacked and headed down to Blueberry Fest for a quick walk. We found some goodies there and then headed to Vangos (a local Greek restaurant known for their waffle fries!) and met up with our parents, our Uncle Steve, his son Jason, his wife Vanessa and their 4month old son Jaxon. It was so good to see them and meet Jaxon! After dinner I met up my pre-school best friend Steffani at a local brewery. She has ALWAYS been in my corner and she's been so supportive with Greyson. She is a wonderful person and so thankful to have her. We caught up and enjoyed a beer together. The brewery was packed outside so we were inside when someone caught her eye and she realized it was her parents friend. Sure enough, her parents showed up shortly after! I got the best hug from her Mom and just talked about Grey, life, and what was going on there. Her Dad came in for a hug and before you knew it, it was after 10:30 and we figured we should call it a night.

Saturday was Outback and the weather in Marquette was gorgeous. It was perfect all weekend. It was high 70s, low humidity, a nice breeze.. ugh, it was lovely. Marquette is such a beautiful place. The pictures is where Outback takes place- this is the view. Just surrounded by Lake Superior. There is something special about Lake Superior, Marquette, and just being "home". Growing up here was amazing. I don't know if we will ever get back to living there, but it will always be "home". It just resets your soul. Winters are a little harsh sometimes, but summers are the best.

Saturday after outback, I met up with Steffani, her husband, and her two youngest boys at the park near my parents property. They played while we caught up a little before they had to head off to her hubby's family reunion. It's so cute to see the little men her boys are turning into! They have such distinctive personalities and just those cute little kid voices. We decided after Steff and her family had to leave that we needed to go take a dip in the lake. My sister and I forgot our swimsuits so we just headed out in shorts and tank tops. The water was actually warm and it felt amazing to swim. If I could spend every day on the beach up there in the summer, I absolutely would. The water felt so good. After out dip we were both pretty hungry and exhausted. We went to take showers and I snagged us some Border Grill for dinner. I ended up plopping down on my parents screened in porch with my book and just read. My feet and back were pretty sore so it was nice to just relax.

Then- while I was sitting there- these photos popped up on my memories. The first two were July 2020. Before our diagnosis. Greyson was sitting, playing, reaching, and grabbing his toys. That big smile was a common occurrence. We took it for granted. We didn't think it would end one day. We didn't think he would regress and be unable to sit in that chair anymore. I wish I would have had the opportunity to spend more time with him then- and capture more of them and more memories. The last photo was when he was younger in meijer. His hair grew in so weird, he looked like such an old man :) It grew around his head- but not on the top or the sides! It took forever for his sides to grow in!

It was a wonderful weekend back home but man, I missed my boys! We are also submitting permits for our hot tub through Make A Wish so I'm hoping we will be able to get that soon! We are going to extend our concrete slab to make room for the tub and build a little sidewalk so we have a safe and even path to get Greyson from the house to the tub so we need to file for a permit for that and the electrical work needed for the tub.

I'll try and keep up with the blog more- and hopefully we won't be in the hospital anytime soon :)

xoxo,

Kim