The past few weeks have been crazy. Have been awful. Have been stressful.
We are just now coming up for air, and learning to breathe again. Literally and figuratively.
Our whole family got sick over Christmas break.
At first, I was just mad. I had all these plans for our vacation; plans of doing things together as a family, providing our children with new and exciting experiences, getting away from the humdrum and routine pace of life and creating new memories to cherish.
None of that happened. Instead, we stayed in the house. We took turns being sick. We coughed and sneezed and shivered and slept for what seemed like forever. Some of us started to slowly get better, but poor Jake got progressively worse. I took him to the ER at the Alberta Children’s Hospital twice, and the second time they admitted him.
And so, at 2 1/2 years old, Jake has now had his first official hospital admission. With a diagnosis of Influenza A resulting in pneumonia, we stayed in the hospital for 6 days, because Jake’s oxygen was low, and he needed some help to breathe.
The good news? 6 days later, we were finally released, and Jake is on the mend. The bad news? We were released to go home on oxygen. Jake does fine when he is awake, but his O2 levels were falling so much while he slept, that they deemed it necessary for him to have home oxygen for napping and sleeping.
Do you want my honest thoughts on this?
I am torn.
I totally get that we have an amazing medical system that is providing much-needed services for my child, and I feel blessed to live here in Canada and have access to all of this. I feel grateful that my son was 2 1/2 years old before we ever had a hospital admission. For a child with Down syndrome, this is a great feat. I feel thankful for everyone who helped out, who supported us, encouraged us, helped watch Cole, loved us, and will continue to do so.
I also feel frustrated and upset. We came home on oxygen, but there is a very real possibility that the oxygen is needed all the time, not just because of Jake’s illness. It is totally plausible (and very likely) that Jake has sleep apnea, and that his O2 levels have been falling on a regular basis for his whole life, but because he has never been admitted to the hospital or had a sleep study, no one has ever picked up on it. So, while I am thankful that we have a solution, I am also upset that there is a very real possibility that oxygen (or some other sort of breathing apparatus) is in our long-term future. And while I would love to say, “oh well, no big deal, we will cope”, the truth is that I am upset that it is one more thing that my poor baby boy has to deal with.
And so, as I am learning to breathe within this new reality and landscape, Jake is literally learning to breathe…