3.8.2016

Monday February 29th

Normal day. A good day. I had Holden with me in the room on our bed. He had been on room air for the majority of the day and acting normal. I took him out of the bouncer to change his diaper so I laid him flat on the bed. I was on the phone with Jess telling him that the water that the humidifier uses was eating water like crazy. Usually only need to fill it up once a day and I had to do it multiple times that morning. While I was on the phone with Jess Holden dropped his oxygen to 89. (His normal range is from 90 to 100) so not a big deal. I turned up his oxygen on his concentrator, silenced his alarm and went to the restroom. Mind you this is so normal. When I came back to the room he was stating 77. This is not normal. I started running around to find the oxygen tank so I could crank him up to 15, the highest oxygen I could give him. Still no change. If anything he went down in the 50's He looked HORRIBLE!! I called Jess to come home then called 911 as I bagged him. (similar to mouth to mouth but for his trach.) 911 was trying to have be give him chest compression but I was trying to explain to them his heart rate was stable. Is heart rate never budged. It was normal to the whole time. 

Jess got home and noticed I had turned his oxygen to 1.5 instead of 15. Way to go me! Once he bumped him to 15 he shot up to 100 and the ambulance got there. Asked what happened and said that now he was stable they didn't find the need to take him. They went to put him back on his vent and Jess started to very slowly turn down his oxygen and he dropped again. They started bagging him again and said they needed to take him to Primary Children's. We agreed. Jess rode with and I followed in the car. At this point I had checked out. My brain shut off. And Jess stepped up. 

By the time I got there he was in the ER surrounded by doctors and nurses and Jess was right by the bed. Holden was zoned out but his vitals were stable. They had him on the vent but were having a hard time ventalating him. (Come to find out they were using the settings when he was in Primarys a solid 3 months ago.)  So first thought was sick or infection. They started running tests and we were transfered up to the ICU. He was put in a room with 2 other babies that both had RSV. We had just found out that all his test came back negative. So we knew we had to get the heck out of there. Since he was stable we were able to convince them to move us to the floor. Which was the biggest blessing. We had our own room and a bed! We never left his side. The first night was really rough! He would not sleep! We were working on getting his vent settings where they need to be because he had gained a fair amount of weight. So we spent the next day working on that. 

On the 2nd we were just sitting there. I kept asking what we were doing what the plan was because his numbers were good his vent was good and we needed to get him out of the hospital ASAP before we created a new problem. The doctor came in and informed us he had him on the completely wrong mode!! Are you kidding me!! That is a huge problem because we were ventilating him completely different then he was used to. But they thought that this was what was best for him and that we could go home. So let me recap. They are changing everything we had ever known on the vent and you are just sending us on our way? Cool! 

So we met our home respiratory therapist at home just to go over the settings and make sure everything was okay. When we got home and we were setting everything up and you just hear a huge air leak and we could not figure out where it was coming from. It was from his humidifier!! Remember how I told you I was on the phone with Jess trying to figure out why it was burning through water so fast. There was a huge crack going almost all the way around it. ARE YOU KIDDING ME? It could have been this. It had to be this! Nothing else was wrong! It made sense. It must have finally just broke! I felt horrible! Did I just put my baby through 3 days of hell for nothing? I could not believe it! We are very grateful that that was all it is. He just wasn't getting enough air.  

The next day we had to be right back up to Primary's for his eye doctor. Which sucked equally. He doesn't need glasses and because of his condition he will maybe sometimes have a wondering eye. All fine. But it was the question he asked that sucked horribly! He asked "what is his life expectancy?"  I have never been asked that before. But I answered it. We don't know. To all my fellow parents out there you ever go to a routine eye exam and get asked what your child's life expectancy is? No? That's not normal? 

We did get the good news that we qualified for the RSV shot! We had been waiting for that and we are so happy we got it. It's supposed to help fight off RSV so we ran right from the hospital to our pediatrician to get that done. Then we had to hurry home and meet our home nurse to get reevaluated. It was a busy day. It was also Jess' birthday. I felt bad. That wasn't how I wanted to spend his birthday. We also had found out some bad news about his grandpa. It was a tough couple days and an even tougher birthday. 

I have been having a crap attitude lately. Even before all this happened. Being home is nice but being home is also very challenging. Its hard. We are the odd man out. It's hard to be around and see families out with their babies and seeing them out and playing. It's hard because we don't know that. I cried the other day because I got to walk around with my baby. Yes. Cried because I walked from upstairs to downstairs with my kid. I had to carry machines too but I got to do it. That's not normal. 

I also have been doing the whole why him? Why us? Over the last 5 months I have seen a lot of really bad things happen to some really good people. To me it doesn't make sense. I have been told that God has a bigger plan and that God sent him to us for a reason. But I don't believe it. I believe in science. I believe that unfortunately me and Jess don't mesh well when it comes to having kids. I don't believe there is a bigger plan. I wish I did. Maybe it would make this all so much easier. But I just don't. I'm working on my attitude and trying to have a better outlook and I know there will be good days and bad. 

Holden is now 5 months old!! Holy crap I can't believe it! But here is the video of him just grinning his little heart out in the PICU!
Don't mind the IV in his head.