I didn’t share when David was sick on social media. It was such a crazy and scary time for us. It just felt better to keep it within a certain circle. I didn’t hide it. But I tried to give him some dignity and grace and privacy throughout his 12 days in the CCU.
Most people assume that he passed away from respiratory issues, and ultimately he did. But the lead up to his passing had nothing to do with his respiratory system.
Since the day David was born, we battled severe gastrointestinal problems. I promise you that I’ve had to do things for David that no mother has ever dreamed of doing with their typical child. This had everything to do with those issues and for once, his lungs were hunky-dory.
David and I were so connected. I woke him up on 10/2 and immediately knew something wasn’t right. Yet I couldn’t put my finger on what was wrong. He was lethargic. But no fever. His blood pressure was slightly low. But something in his eyes. It wasn’t right. Moe had to take a work phone call and he went on a drive to take that call and I was hoping to be able to wait and see how David responded to some stimuli I was trying. Kyle was at work. I called 911 within 6 minutes of Moe leaving the house. The two first responders to my house were my husband and my son. I still wasn’t completely worried. This was a typical reaction for David with a UTI. Our local ambulance was already on a call so we had to wait for probably 15 minutes for another one to come this way. I had multiple firemen here at that point and again, I wasn’t too worried.
When they arrived, I let Kyle handle lifting him onto their bed and gathered the usual things. My wallet, phone charger, his basket of meds, diaper bag, feeding supplies. None of this was new to me.
We got on our way and I had Kyle call his dad. Moe got to the hospital shortly after we did and Michael wasn’t far behind. They did some bloodwork and urine tests and did tell us David had a uti and that’s what I texted my family. When we got to the ER, the doc did mention that his belly was distended, but again, gastro stuff wasn't new. And either was a distended belly. But the doctor did order a CT of his belly.
Within 20 minutes of that CT scan, our lives completely changed. The Dr asked what kind of life saving measures we were willing to take for David. Without knowing why the things were going on that were going on, I said we had to find out before we could make a choice. He was rushed into emergency surgery. Kyle had gone to class that day and Moe went to pick him up as soon as he was done. We knew he had a test that day and we didn’t want to call him with this kind of news. Michael’s wife came from work. And when we were all together, we had some really hard talks. I believe we were all on the same page.
David did come out of that surgery but his chances were still not good. They didn’t close him up and had a wound vac. They kept him sedated and on the vent because he still faced another surgery. And when THAT surgery happened, he had more removed and I felt like his chances were possibly even slimmer. But that kid was able to be taken off the ventilator 2 days after that surgery. His eyes were open and he was alert and it felt oh so very very good to see his eyes and that tube out.
We had a super long way to go. I was at that hospital every single day. Even when it was Michael’s day, I was there. We tried to alternate nights but that wasn’t always possible. Moe always brought me dinner. My sisters both came to see him. He was laughing hysterically at Nicole one of the days. One of the things we were FINALLY waiting to happened, finally happened and he was able to start EXTREMELY slow feeds through his gtube (he had been on complete gut rest this entire time, only getting nutrition through his PICC line in the form of TPN-total parenteral nutrition.) He was able to get more of his normal medications (no sleep for him for 4 straight days because he wasn’t able to have his sleep meds). He was actually downgraded from CCU status to a regular room status but there were no beds available so he just got to stay where he was and had amazing care. I told my sister not to cancel her trip to Mexico because he was doing so much better clinically.
Until one night he wasn’t. He was fine. Then he wasn’t. I was by myself. It was a little before midnight. It was me and 2 nurses trying to figure out what was wrong. Then it was the charge nurse and another nurse plus me and 2 nurses. Then his breathing changed. Then the rapid response team was called. I heard them say there was no profusion. They were about to intubate him when a nurse we actually hadn’t met yet and wasn’t even assigned to David that night (but had stayed by my side the whole time we were going through all the previous steps) looked at me and said “I cannot tell you what to do. I know he’s full code. But I don’t think he’s coming off of that ventilator. And just talking to you for an hour about David and his quality of life, I think you need to think of the long term and I don’t think you want what that will look like.”
And I had to make a choice in about 15 seconds. His quality of life was gone. He would be horribly sad to be hooked up to tubes all the time. So I said no more. I wanted to go to comfort care for my baby.
Then the room was quiet. Everyone left. Drs, nurses, respiratory. It was just me and my very advocating nurse. It was 1am at that point. I was trying to call Michael and his wife. I couldn’t get anyone to answer and finally got a hold of Michael’s mom. She was able to finally get a hold of him. I couldn’t get Kyle and Moe to answer. ALL of us were purely exhausted from the strain of the prior 2 weeks and they just slept hard. I finally called the officer I knew was probably on duty to come knock on our front door until those 2 got out of bed. Michael called me and was on his way and I had to tell him my decision and make sure he was ok with it.
Then I got in David’s bed with him and just held him. Everyone made it in time to say their goodbyes. Kyle and I were holding his hands and Michael and Sarah had their hands on his legs and Moe had his hands on my shoulders. Michael’s parents and Grandma Marie were in the background of the room as well. While Michael and I don’t always agree on things for David, I do know David was surrounded by love when he took his final breath shortly later.
The nurse was an absolute godsend. She went and got a canvas from the PICU and asked me if I wanted her to paint David’s hand, and had me pick a paint color. We stayed with him for quite some time and when it was time to leave…I couldn’t. I didn’t know how. She sat down next to him and put a hand on his leg and told me she was staying with him so I could go.
Then came the phone calls to everyone. Imagine having to call your mom at 5 am her time to tell her David was gone. Just 3 months after my dad was gone. I called my sister who lives near her to go be with her. Moe got a hold of my sister in Mexico and I felt terrible having to tell her. It took me a little longer to get a hold of my sister in Springfield. And when my littlest niece saw her crying when she woke up, she immediately knew David had died. Jessi came to spend the day with me. Moe didn’t let me out of his sight that day unless I was with her. We had a clear sign from my dad that he welcomed David into heaven through songs playing on the Alexa.
I’m still tired. I still dream of that night very very frequently. I still look at all the pictures and videos of David throughout those entire 12 days. I keep them to myself because I don’t feel the need to share them. He looked good. It was really hard to have no hope and then have so much hope because he proved them wrong for a little while. To then have the realization that ultimately David had the final choice and I just voiced it for him. I miss him. Deeply.
I know I’m not the only one to lose someone. I’ve watched many moms I know personally and virtually lose a child and it’s a shitty club to be in. I won’t ever compare my loss to theirs. I won’t ever compare my loss to a loss of yours. All losses suck and I wish we didn’t have to feel them.
I won’t leave you with a picture of his time in the hospital. But I will leave you with one of my favorites.
