Now what?

Yesterday was a mess. I held back the tears of frustration as I got phone call after phone call changing one thing about Alex's surgery, then another, then another. I felt so helpless, and almost apart from the situation. It's so hard to explain. I was nervous anyway about the surgery - I mean, come on! He's going to have major surgery and be in a cast for a long time? Of course I'm nervous. But on top of that I was nervous because the surgery was going to be at Shriner's Hospital. I have no problems with Shriner's. In fact, in all my years of special ed I've heard nothing but fantastic things about their skills, and their compassion. And I've felt that with the doctor appointments. But I've never been there for a surgery, so I felt completely out of my comfort zone. I know Primary Children's Hospital like it's my 2nd home, and I've only been in the foyer and clinic at Shriner's. I know where every bathroom is at Primary. I know where 1 is at Shriner's. I know every drinking fountain, what kind of food they serve at the cafeteria, where they keep the 'toys' at Primary. Nothing at Shriner's. You're probably thinking, "You're not the one having the surgery! Get over it!" But I am the one who will be looking after my child's needs. I am the one ultimately responsible for him, and if I don't know what I'm doing, I might fail.

Then the first phone call. The surgery won't be as severe. (That's a good thing!) But we might have to do the bigger surgery anyway 6 weeks later if the bone doesn't hold. So that means surgery now, cast for 4-6 weeks, then possibly all over again with a bigger surgery? I guess this occurrence of a screw breaking in a 'skiffy' is so rare, that while we were sitting in the doctor's office looking at the x-rays finding out the screw broke, one of the doctor's in the office was sitting in a conference being told, "99.9% of you will NEVER see this in all your years of practice, but just in case you do, here's the procedure." When that doctor heard about this, she just laughed, and I guess called the conference presenters, who also got a laugh out of it!! Anyway, the nurse will call to give me later with the time for surgery the NEXT day! Whew!

The nurse calls, asks me a bazillion questions about his health, then tells me to call after 5:00 to find out the time of surgery. OK. I can wait.

Then she calls me again. After talking to the anesthesiologist, they would like us to come in that afternoon - like 3 hours after this call - to be monitored overnight because they are not comfortable with the pneumonia he is still recovering from. I'm OK with that, too. I'll have to make some arrangements for my babysitting kids, but this makes me feel good to know they are taking his pneumonia seriously.

Another call. This time from the anesthesiologist herself!! Now they want to postpone the surgery for 2 weeks!! Ahhh! My head is spinning as she tells me they don't have the staff right now to cover a difficult case like Alex (such as a respiratory therapist and someone to monitor his diabetes), and we need to keep him immobile until the surgery.

Uh-huh. Right. Like that's going to happen! I guess the kid should be in pain, but we all know he has a huge threshold of pain. I mean he walked on a dislocated / broken hip for 3 weeks for heaven's sake! He feels fine now so why am I all of a sudden expecting him to be in the wheelchair? "See! I can walk mom!! Are you proud of me?" How do you tell him, "Yes, but get in the chair!" He doesn't get it. I'm not sure I get it, how can I expect him to?

The upside to this is all the concern we have felt on his behalf. Thanks to a lot of prayers, and people calling / texting to see how we are doing, we will make it through this.

Who knows? Maybe I'll read this tomorrow and think, "Oh my drama!! Get more depressing that that!" and I'll realize what a lucky family we are to have this kiddo in our home, to show us how to act with adversity. To make us smile when the tears are threatening. I'll realize how blessed we are to live in an area where we have such access to specialists who can help us in a situation that is almost unheard of!!

But for now it feels good to vent! AHHHHHHHH!!!