Life is such a roller-coaster ride. When Jameson came into our lives we knew there were going to be ups and downs. One of our top priorities is to make Jameson’s life as normal as possible, while doing everything we can to keep him healthy and growing. We have embraced every appointment, every procedure, every follow-up; and even more so have counted our blessings and enjoyed the calm. Although I know and understand what lies ahead, and all the what-ifs that may develop as we go, I get settled into our routine. I get used to our normal, and I forget that speed bumps lie ahead. Jameson’s last surgery was last March. Sure, he has medical appointments, he goes to speech and occupational therapy every week. But this past year has been so uneventful. I have happy boys running around my house, driving me crazy, getting into trouble; I have boys running around my house doing what all other boys do.
I embrace this and enjoy this more than anything, because even though it’s been pushed to the far back of my mind, I know there will always be what-ifs with Jameson. Today a what-if became and now-this.
We finally had our follow-up appointment for Jameson’s sleep study that he had in February (yeah, don’t even get me started on that one) earlier this week. I sent a copy of the report off to Dr. Fearon and heard back from him today. Jameson’s sleep study showed severe obstructive sleep apnea. We are not surprised at this. We knew it wasn’t going to be great. I had thought that the next step would be to have Jameson’s tonsils and adenoids removed. But, gears have changed and we need to get Jameson on a CPAP as soon as possible. Jameson averaged 47 apneas per hour and his oxygen saturation dropped to 50%. If by chance (and there is a good one) that Jameson won’t tolerate the CPAP, he will need a tracheostomy.
Now, I say there is good chance he won’t tolerate the CPAP because my Jameson is stubborn and resistant. But, we will do everything we can to give this a try. I am not opposed to the trache, and as my mother mentioned, it’s less invasive than removing his tonsils and adenoids, and leaves him with his immune system in tact. So, here we are.
All afternoon I have been processing my feelings. I feel like I have been snapped back to reality. We had a whole year to relax without worry, and in one fell swoop everything changes. Granted it could always be worse. But here we are, about to establish another new normal for our family.
I don’t even really know how to explain what I feel. From a medical perspective, I am completely fine with all of this. As a mother, I am fine with the CPAP, and I would be fine with a trache. I think what I am feeling has to do with how much Jameson is suffering and not knowing. He puts on a smile, giggles, still loves to play, and gets excited about silly things any three year old would. But when he lays down to sleep he is not getting rest; he is not getting nearly enough oxygen, his body – his brain is not thriving. Most adults would wake up cranky, irritated, and miserable. But Jameson, he wakes up and wants to snuggle, eat pancakes, and play outside. This completely tugs on my heart.
Now, I could also be more emotional than I usually would from how stressful my life has been — I am in school full-time (kind-of more than full-time) to become a Respiratory Therapist; ironically enough, lol.
Don’t get me wrong I am grateful for the medical care we have. We are fortunate that we don’t have to struggle with co-pays and out of pocket expenses. But, I am so mad we fought for six months to get his last sleep study scheduled, I am so mad we waited two months to get results for a sleep study that was so severe when Dr. Fearon read it he called me immediately. When I called the sleep clinic to get Jameson scheduled to come in and do what needs to be done to get on the CPAP they were closed for the day…
So, we will see what the process will be like to get Jameson situated. If anyone has a small little one on a CPAP I’d love to hear about your experience, how did they handle it, what kinds of tips/tricks you might have to make it more comfortable for him.
Until next time…hopefully not too long from now 😉