A couple of days ago Rylan started acting tired, abnormally tired. So my mommy intuition kicked in and I threw the pulse ox on him and my fears were confirmed. His oxygen was low. While it wasn't scary low, it was low enough for me to know something is going on.
I have spent the last few days hovering and watching Rylan like a hawk. The pulse ox basically lives on his finger, Im watching it go to 97,96, 95......89.......back up again. My anxiety decides to show its face. Great. I look at him, he is breathing comfortably, not even belly breathing.... Now its weird.
Well on Saturday Steven and I were going to go to a wedding and Rylan was going to hang out with one of his nurses. When she got to our house I explained to her what was going on and she did her evaluation. She said she heard nothing in the lungs, so she was confused.......but here is the kicker.......When we put him to bed his stats go up to 96-97.
As most of you may know it is normal for the human body to destat. when sleeping do shallow breathing. So this confused us further.
Last night Rylan had a rough night. He had a coughing fit all night. LITERALLY ALL NIGHT.
Today I wanted to go with two girlfriends of mine to a bridal shop. But due to last nights episode, I needed to get him seen.
|Dr. Riordan, this woman is amazing|
So off to the pulmonologist we go. I explain to Dr. Riordan whats been going on and she listens. Within 30 seconds she hears crackling in both of Rylan's lower lobes. Conclusion.....Atelectasis.
As some of you may have recalled Rylan had Atelectasis when he was rushed to the hospital earlier this year. So now I went from Anxiety ridden to flat out PARANOID.
She instructed me to put him on Q2 (which in the experienced lung problem world mean breathing treatments every 2 hours). Needless to say I can say goodbye to sleep tonight.
This also means that when my step-daughter arrives tomorrow.....Rylan and I wouldn't be there. A long car ride wouldn't be good for him. So I got really bummed, I haven't seen Amaryssa in a year. I really wanted us there. Im grateful for my AMAZING mother. She so unselfishly volunteered to drive to our house and stay with Rylan till we got home and do his treatments for us as well this way I could meet her when she got here alongside Steven.
Whereas I feel REALLY guilty about that. Steven made me feel better, Reminding me that Rylan loves his grandma time.
Your probably thinking where does the selfish mom come in? Well I kinda had a "poor me" pity party after the appointment. When I first had Rylan I joined support groups and I was hearing how lonely most of the people were. It never really started affecting me until recently.
I have missed a friends funeral, birthday parties, and numerous other activities for the sake of Rylan's health.
It does get frustrating. VERY frustrating. I do have an AMAZING support system. But I do miss the being able to meet with friends freely. Or going to a kids birthday party without fear of germs.
Its lonely......as I listen to my amazing little boy continue to cough nearby. I am thankful for all the things I DO have.
Steven, my Mom and Rebecca......I dont know what I would do without you.