MELTDOWN PREVENTION = DEEP BREATHS

You know how you have something scheduled way off in the future and you think, ah heck, that's so far away, I don't have to worry about it now. Then it hits you that weeks/months have passed, and now the time has come to start dealing with it? Colby's VEPTR surgery, for example. Yep, it's crunch time, only 36 days until surgery. Unless of course they move his surgery date, again. Colby also has tons of pre-surgery appointments, i.e. trips to Cincinnati, him missing school, making hotel reservations, coordinating all this with the ortho department, etc. Need to reach out and talk to some other SMA families that have been through this surgery so they can give me some tips on what to expect. Working on getting some extra nursing hours for when we come home from the hospital post-surgery, I know we'll need them. Summary: I'm freaking the freak out about it!! Inhale, exhale. Inhale, exhale.

Hey, guess what? This may shock you to hear this, but Colby's supply order for the month is messed up. Whaaaat, really, wow can't believe it!! Ordered 12 items. So far we have received 4 items correctly, 2 items the wrong amount, and are waiting on the others. Same mix-up as last month, instead of sending 4 CoughAssist filters, we got 4 boxes. Congrats, Apria, really. You all must work really hard to be the total fuckups that you continue to be. Words can't explain how much I loathe dealing with this company. Inhale, exhale. Inhale, exhale. Let's move on.

Colby's Monday-Friday day nurse, still sick. She needs off this week also. I tried to get the firefighter/RN dude that has shadowed with Colby several times to go to school with him. His only availability is tomorrow. I took Colby to school yesterday and handled his medical needs. I've been told I can no longer go to school with Colby and be his caregiver, as I could be a "liability." Ironic, when Colby has blood pouring from his mouth unexplainably, or if he's blue and his oxygen is low, the school calls me and wants me to get there as soon as I can to help. Sure as heck not a liability then, am I? I've been told I could raise a big stink and get this changed, but I'm not. I'll save my energy to fight some other battle. Whatev. Inhale, exhale. Inhale, exhale. I just hate it because Colby is already missing so much school with appointments and surgery.

So if it seems I'm a little wigged out at the moment, damn skippy I am. I'm not completely jaded, though. I know we have many, many good, wonderful things in our lives. Colby is healthy! Well, as healthy as he can be, he's "Colby healthy". This time last year we were in the middle of an excruciating 37-day hospital stay when Colby had the flu. At least we're not dealing with that, right? God has blessed me with the most wonderful, giving, loving, fantastic, helpful parents on the planet. When I thought I would be taking Colby to school this week, they were like, what do you need, how can I help? They will be right by my side to help with Colby through his surgery. I'm not kidding, they are THE BEST parents anyone could ever hope to have. And if I'm not mistaken, spring is finally here? Good deal.

Okay, off to make phone calls, send e-mails, and get Colby up for the day. It's all going to be fine. Just need to remember to do what I can to move things along, but ultimately you have to turn it over to God, and it's going to be what it's going to be. Dory has just keep swimming, just keep swimming. I have close your eyes. Inhale, exhale. Inhale, exhale.