Oh, the hours and the hours and the hours that that place sucks out of my life. It is especially hard on a gorgeous spring week like this when my kids are off school and should be going on fun family outings but instead we spend day after day holed up in that damn hospital. Let’s see, two weeks ago, it was 10-6 on Monday for a blood transfusion, then the GFR that Thursday (8-2), followed by the repeat GFR that next week plus three in-patient days. This week, it was scans on Tuesday (9-4), ECHO and labs yesterday (11-3) and platelets and blood today (10-6).

All week, the boys have been looking forward to a trip to the zoo scheduled for this morning. Then  yesterday, Austin’s labs revealed the need for transfusions today so we decided to go first thing in the morning for a quickie 1 1/2 hours before heading to the hospital by noon. Then last night, his line wouldn’t flush (which has been happening quite a lot lately), so the zoo was canceled and back to the clinic we went. Needless to say, we’ll be checking out the giraffes bright and early tomorrow morning.

Luckily for me (and Braedan), Mark took over at noon today, even though I can think of 18 places he’d have rather spent his afternoon off work (hole one, hole two . . .).

Austin is a champ though. Every once in a while, he whines, “Wheeeeennnn aaarrreeee wwweeeeee goooooooooing hoooooommmmeee???” But for the most part, he plays happily and doesn’t complain. For the most part, I don’t complain either. But I do hate the last minute nature of so many of our appointments, which are usually scheduled the day before they occur or even the day of, and I really really hate the extraordinary amount of time we spend waiting. Yesterday, having skipped my very favorite pilates Boot Camp class (exercise, you know, is one of the few things I can count on to maintain my sanity) for his 11am ECHO, I grew increasingly feisty when noon rolled around and we were still sitting in the waiting room. When the tech finally came to get us, I was bitching and moaning about how I could have made my class after all, and she said something like, “Oh, I remember what that was like with my son.” And I was following her down the hallway silently scoffing and thinking, “What, for his Well Child visits?” like “How on earth could you pretend to know what this is like?” Well, turns out her son had lymphoma when he was two. Oops.

As we left, I apologized for “being feisty” and she assured me I was well within the bounds of reason. Her son is twelve now and doing fine. So I will quit complaining and willingly sacrifice hour upon hour and day upon day if Austin can get that time back in years. If for every minute we spend there, he gets an hour of happy normal life; if for every hour, he gets a day. . . That will be more than worth it.

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