July 5, 2013
Ever in flux. Ever blessed.
Getting used to life with a sick kid is knowing that you just can't make solid plans, this we have learned a long the way and will explain the later part of this post. The other things we have learned in regards to the hospital stays are that it's not cheap. There is the food, the endless amounts of coffee needed to get you through the long waits, or even longer nights of no sleep sitting bedside, there is the parking (crazy crazy crazy amounts of money!) and all the other little incidentals that come while staying in a 4X6 cell with one bed and a small couch.
Last night, when Tim got home he gave me a gift bag, with a card. our beautiful new family at Little T have thought of everything we could need during our stay, to show us their love and support they gave us gift cards for the restaurants
Taking life a day a time has new meaning for us this week. Everyday something changes, plans are thrown to the wind only to be put to rights again hours later, and then yet another change tosses it up all over the place. If someone were to ask me, what are you doing tomorrow... I can honestly say I have no idea. I know what my date book says I am doing but that's just a best guess or in some cases a best hope. We started the week thinking that we were going in for the surgery on the 31st of July; that's the plan, it's what we have made all of our summer plans based on.
I should quickly insert here, for the blog readers that do not know, we have decided to add exponentially to our stress this summer and make a move from the house we live in now which we hope and pray we can find renters for, to the rectory of Little T which is beside the church; making it possible for Tim to be more of a daily presence for the boys and I. We move just one week post-op. Yes. We have discussed this and we have decided that we are indeed insane...
Back to the week then... so the move, taking place in the first week of August was planned based on Josh's surgery, so that I can focus and get all the packing down pre-op and then be in the new house focusing on Josh during the recovery period. In theory it's still nuts but it allows more room for me to settle in and unpack while Josh recovers, still allows time for us at the cottage post-op and in September it means that Josh's bus will already be arranged for the new house, and Kaleb will be in his new school and not need to transition. (I'm justifying our craziness... ). On Monday I was asked by our Cardiologist to give an update on Josh's medical status (she has been on holidays), so I told her what I was seeing, more frequent meltdowns and periods of extreme lethargy, less energy to do the little things and general feelings of 'sick'. The heat is making everything that much worse. When I reported all of this she decided that we needed to push up the surgery date. I got word on Tuesday that it could be as early as next week, sending me and all the other departments in the hospital into a panic because everyone wants a piece of us for the pre-op stage. Dentistry, Neurology, and of course Cardiology; and just to throw more confusion into the mix, Josh has cavities that HAVE to be filled before OR - AND - Tim's only holiday this summer is NEXT WEEK! It's been a crazy pace of packing, making calls, booking appointments, getting Josh to the appointments, and then changing all of the plans numerous times before everyone (about 4 departments at Sick Kids) are happy. Life at the moment is like a Tsunami.
Things changed again when the surgical co-coordinator let us know that next week surgery would not be possible, our surgeon is on holiday for a week. So, yeah! We get our holidays after all! But wait... we still might need an appointment on Monday... and then again on the 15th and then again on the 16th... *insert a big sigh here* because this is the point that I stopped caring and started to giggle (maybe I really am losing it?!). I can't keep up with all the changes and for someone who SUCKS at being organized this week has been a bit of a joke, my poor date book has been marked up and scratched out so many times I can no longer read what's what.
Last night, when Tim got home from work I updated him on the new changes and that definite that we will get in some cottage time before the next round of appointments and we were both filled with peace. It's what we really wanted for Josh & Kaleb, to have time with all of us as a family before Kaleb is off to Grandparents and Josh is in hospital.