Battles against terminal illness, anxiety, and life!

Push Me Pull Me

Whenever Braden leaves my side, I have to rely on the information from those he is around to keep tabs on our little man. The past few days have been challenging. With new people comes a large learning curve. Is that face a good one or a bad one? Does that sound mean he is having a hard time breathing or is he pretending to be a duck? With time you start to learn and reach a comfortable rhythm.

Not much has been comfortable about the past few days. Braden’s oxygen has fluctuated from 82% to 99%. The low of 82% happened while he was at summer school with those who aren’t normally around him. He has cycled a few times down to the low 90’s while at home today. In short, my son’s breathing has been on a heck of a roller coaster ride! So, in between playing with the hose and playing with his sister, we would stop and give him the once over and make sure his airway was fine and all systems were functioning properly.

Today we received yet another piece of medical equipment to help keep Braden’s airway clear. His cough assist machine was delivered. This brings us to a total of 42 pounds of medical equipment to lug around! I told y’all it was like mobilizing a militia! Thankfully my son has an amazing sense of humor. The gentleman that delivered it warned us that it often causes children to cry. Braden laughed hysterically and then made us all try it! Thankful for my little man!

We have numerous specialist appointments lined up in Birmingham at the children’s hospital in the coming months. I am already planning out ways of entertaining the kids while we wait the four hours it typically takes to see each of them. I will be putting together arts and crafts projects in gallon baggies this go around. “Here sit over there and cut this paper up and then glue it on that.” Sounds like good fun.

We have started the process to get Braden his first honest to goodness wheelchair. We have the first appointment towards this goal on July 3rd. The entire process is expected to last six months. The main reason for this is fatigue. I am doing my best not to get myself worked up over the change.

We break ground in less than two weeks on Braden’s new room!

So much happening over here!

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