I pour a glass of wine and sit at the computer....Rylan just had his last vest treatment for the night and he is digesting his last feeding. I log online and read about someone having a good day at work, or someones expecting a baby, etc......I browse through photos of my friends and their night lives....and realize it will never be that easy for me ever again....its gonna get harder.
I glance at Rylan and realize he is the best thing thats ever happened to me. He has made the person I am today. There is just one thing I stress about consistently...and its wearing me down.
Rylan's oxygen is consistently going up and down.......you check him in the morning 98...oh wait....95....93....90!......96 now....ok.....and I cannot help but freak....if he is destating before bed I dont sleep. Im up every hour checking on him......positioning him.....wondering when will I need to take him to the hospital.
Rylan has been doing VERY well here lately. Yet instead of relaxing im stressing.....cant let my guard down. The State of Arizona took away the nursing I had so its up to me to keep an eye on him. Which I do not mind at all! But it can be overwhelming.
I also sit back and think when did I get like this??? Not only am I stressing about Rylan's O2 constantly. I have become the biggest germ phobic. I cant allow my house to get dirty at all......and i cringe at taking him to doctors appts knowing there are sick kids around...(and all I can see is them coughing without covering their mouths, wiping their noses with their hands and touching door handles...). I even tell his aide at school everyday to put a mask on him if there is a sick kid in his class, oh there joining another class for art projects? put a mask on. I guess living in a hospital and almost losing your child will do that to you.
The part that sucks the most about all this? Is I feel like no one besides Steven FULLY understands what is going on in my head. I dont have the energy to really socialize anymore and have come to the realization that I have lost some friends due to it. But I am forever grateful to the friends and family that have stuck by.
Well now that I have got this off of my chest....I got some suctioning to do. Then Ill be checking some O2 stats and finishing my glass of wine...before I try to go to bed for the evening.