Home Sweet Home

It feels a little like getting out of prison. In no way do I prefer the hospital, but it is daunting at first putting together her schedule of meds and feeds and then just doing all her other cares by ourselves without supervision. Do they really think we're capable? As always a rhythm will develop and the meds will be weaned and then we'll be back to our new normal.

What exactly do I mean by a new normal? Up till this surgery we could all lift Shannon by ourselves - granted in this past year she's gotten a little ganglier and heavier and I knew before long I would no longer be able to safely do that. She gained 10 lbs with this surgery and single person lifts are impossible and not safe for her or the lifter. So, when transfers are needed 2 adults will be needed. Further into her recovery, like 6 weeks or more, a hoyer lift can be used. Also, a new stander is in order for weightbearing and to prevent her bones from becoming too brittle. We're also looking at new bath chairs - one that can roll into the shower or sits in a bath.

We had a little scare tonight and are keeping a close eye and trying not to worry about a small area of possible infection. Perhaps too much info., but keeping the lower part of her back - the incision goes to the very bottom of her spine, no pun intended, clean is very difficult. So, we clean as best we can and pray for rapid healing.

For now - we have food or meds to deliver every 2 hrs. round the clock except for one 4 hr. time period during the night. Stinkin' Tylenol only lasts 4 hrs. and Ibuprofen inhibits bone healing - so, for now we set the clock. Hopefully in another week or so we can try spreading out those night hours and hopefully weaning her off the meds - one that is particularly addictive - will not be too difficult for her.

Day 7 - hopeful

So, today we started her feeds at the ridiculous rate of 1/2 oz formula and 1/2 oz. water - which worked. Then we went up to 2 oz. of 1/2 and 1/2 - then 3 and just an hour ago 4 - hallelujah we may be on the road to home sweet home. After watching almost the whole floor of kids empty out - 8 went home - only 4 of us left - we sure hope to be heading out before 1 tomorrow.

This day was one of those days when this diverse family was just a lot to handle. We had an adult daughter miss her work bus, so had to run her to work after loading 2 on their summer school bus and dropping one off at his summer school program. Then, we get a call that Christian's G-tube fell out so Mark had to deliver that to school and then put it in as the school "nurse" had no idea how to do that - seriously.

Then I got a call at Gillette, the hospital where Shannon is, that our former foster son, who we retain guardianship for, was at Gillette and needed a form signed in order to be allowed to pay for his own dental as MA no longer covers two visits a year - again, seriously? So, I walked over to do that and called Mark on the way back and we commiserated on what a ridiculous life we lead sometimes.

Should we go home tomorrow we will be embarking on a new path. There are many things that will never be the same with Shannon - none bad, just different - a new normal - yes even at our house there is a normal - Reeves style normal.

So not fair!

Yesterday Shannon had an appointment with her back specialist. He's been watching her scoliosis for years and we had expected that eventually major back surgery would be needed, but thought we had at least a few more years before we had to deal with it. Well, yesterday's X-rays showed a 55 degree curvature - a 10 degree increase in 6 months. She has curves in 2 spots. She also gained 10 lbs. and grew 1 and 1/2".

Mark said he felt like he was punched in the stomach - just wasn't expecting it. It's not a great time for our family either with wedding plans and all, but that seems selfish to even mention when Shannon will have to deal, well has to deal, with so much pain so very often. She rarely awakens in the morning without crying from pain due to her cerebral palsy.

When my kids complain about something being unfair I often give the mommy answer - who said life was fair. But honestly, this is just so very very unfair.