Well, it’s been a week since Ezra’s transplant last Wednesday. He had several days of throwing up, which was hard to see. He also developed mucositis, which was worse and something that almost everyone who received chemo ends up getting. Mucositis is a painful inflammation and ulceration of the mucous membranes lining the digestive tract. He will throw up mucous and it is extremely painful and causes a burning sensation. So, patients usually develop sores in their mouth, throat or stomach. Ezra slept most of Wednesday and Thursday and then we had a bit of a scare of Friday. Ryan and I noticed that he was extra sleepy, his breathing was abnormal and he was taking gasps for air. Our unit started giving him some breathing treatments ended up calling the rapid response team from the PICU to come in. There were literally about 10 people who rushed into our tiny room with all types of equipment. Needless to say, it was VERY scary. After assessment, they determined he was over sedated from the pain medication he was given. It’s hard to find the right dose for such a little guy. They gave him something to reverse some of the medication, which definitely helped.
Since then, Ezra has been doing surprisingly well and gaining weight like crazy. They adjusted his pain medication and he has been stable ever since and has been experiencing minimal discomfort from the mucositis. He has remained alert, interactive and is smiling more. We know that this is all due to the prayers that he has been receiving! One thing that they are still trying to stabilize are his blood pressure and heart rate. His heart rate is expected to be a bit high due to the pain, however the blood pressure is something they would like to see go down.
Right now, we are just waiting for his new stem cells to engraft and monitoring him. This can take anywhere from 12 days post-transplant to 6 weeks. However, they say in little babies it is usually on the shorter end, which we are extremely hopeful for. During engraftment, patients tend to get sick again with flu like symptoms so we are trying to prepare ourselves for watching our tiny baby get sick again.
On a bright note, Ryan and I were able to get away and have a date night this week, as his parents were in town and able to sit with Ezra. This was SO needed and very refreshing.
Please continue to keep our sweet baby in your prayers as we continue to wait for engraftment, his blood pressure issues and the illness that comes with the engraftment. We appreciate all of you!
Repping his home state!