Makenzie was very underweight. She was malnourished and needed to gain weight. We were told the best thing for Makenzie was to get the feeding tube out of her nose and put a G-Tube in. Since we thought she had SMA we knew this would most likely happen at some point anyway and its best to do it now. Help her now and be able to get her as many calories as we could now. We could feed her even when she didn't want to eat, at any time of the day or night.
We met with the surgeon who was putting the Nissen and GTube in Kenzie. He was a younger doctor. He was so sweet and made sure I was comfortable with everything. Ryan wasn't able to be there but when I explained everything to him he was on board. It was scheduled for the next day I believe. It was quick but I cant remember exactly how many days after we agreed and it was done.
The surgery was 2 hours. It was so long. It seemed to take forever. While she was in surgery I may or may not have done anything to keep our minds busy and crawled into a child's car and got stuck. It made us laugh.
After surgery she was out of it but doing great. We were learning all about this new gadget she had. I was so glad they started teaching me how to care for it right away. We had to change the dressings twice a day and make sure it was clean and healing right. At first the G-Tube worked great. The nissen was placed so that she couldn't reflux anything. Since she was on a respirator it was important that she not be able to throw up.
Here is the post I wrote after her surgery.
I miss that perfect belly of hers. But I miss that button as well. just miss that girl. Every part of her.
Surgery was on Tuesday and Thanksgiving was Thursday.
I was NOT interested in doing anything. I was not leaving Makenzie so no one should even suggest it.
Ryan's parents understood but insisted we do something. So instead of cooking dinner at their home. They went to The Little America Hotel which does an amazing Thanksgiving dinner. Its only miles form the hospital but it was not in her room so I was not happy about it. Ryan insisted we go.
I waited until the last second to leave. We rushed to dinner. Ate a few things. I tried to enjoy myself but I didn't see anything but a room full of happy families. A room full of people with the ones that matter most. and there I was. Celebrating my daughters first Thanksgiving with her laying in a hospital bed and I wasn't with her. It was the most sickening feeling ever. We were there 45 minutes. I gave Ryan the look and he knew we needed to go. I know everyone wanted us to stay longer but I needed to be with my baby. I told Ryan to hurry back. That I was ready to completely lose it. He pulled out of the garage fast and not paying attention and riped his side mirror off. Yes Riped it right off. It was great. He didn't even get out to look at it. He just sighed and sped off. We rush back to Makenzie and I felt horrible for leaving. We spent the rest of the day loving on her, reading books and telling her all about Thanksgiving.
My sister brought us dinner that night (a second Thanksgiving dinner) and it was wonderful. It tasted amazing. Probably because I was eating it in the hospital. It was a reminder that I needed to do what was right for me and my daughter and not what anyone else wanted. There are times you do that. but not on this moment. Not on that day. I should have done what was right for us.
This week was a week with big decisions. We knew Makenzie was very sick and there was a lot of changing we needed to make in life. We lived in a 3 story condo and knew we couldn't bring our baby home. She would be in a wheelchair at some point and I needed to care for her so I needed to quit my job. Both of those reasons made us put our place up for sale. We also listed just about everything in our house to help with money. I told my boss I wasn't coming back to work and to find someone new. Thankfully he said I needed to give it more time and that he wasn't going to do anything until we knew anything for certain. Ryan was busy taking down all pictures in our place, listing items on craigslist and getting ourselves ready for a big change. I did my best to research everything I could about insurance- what would and would not be covered. What our options were. The support we could get. Etc.
The doctors decided to try and extubate Makenzie on Saturday but ended not being able to because her chest xrays were really bad. I was so upset. I wanted so much to be able to hold her without tubes.
One of the worst things this week was on Saturday night. Ryan got a call from his boss at work. A guy they work with through a different company was on his way to the hospital. His daughters little boy was really sick and was being life flighted from Pocatello. I had never heard of these people but Ryan had. He was worried about them and went to check on them in the ER.
Their little boy was brought to the PICU just down the hall from Makenzie. He was very very sick. He had cancer. They didn't know until now. I wanted to help this family so much. I felt like I knew the ropes around this place and I could help baby Rykers Mum. We talked to them a bit in the waiting room but this was not a time to make new friends. We shared dinner with them one night but they were in a whole different boat than we were. Their sweet Ryker was declining quick. Every little update we would hear I was just sick about. I wanted so much to go hold this Mum and just be there anyway I could. They were so incredibly strong and I was amazed at how they held themselves together as the news kept coming fast. I would walk by Rykers room and was overwhelmed at what an incredible little boy I could see he was. He had such a light about him. I was overwhelmed with love for this little person I just met. We heard on Monday- November 30 that sweet Ryker passed. We went to give this family our love and support. We hugged Rykers grandpa but wanted to give them space. I went back to Makenzies room and remember so clearly leaning over her bed. Kissing her face. Praying for this family. Asking God to hold them close. and in the same breath. Thanking God for not taking Makenzie. For giving me a life with her. because I just couldn't imagine losing her.