Necessity - the great mother of invention.

Yesterday we needed to wash Shannie's hair - but we have no accessible shower yet and no bath chair for her new and improved body yet either. So, what to do. Well, we used a plastic bag to cover her head rest and with the help of a big brother tipped her back and voila - clean hair. Now we just need to be sure we have those shower and chair items in place before a Minnesota winter - oh, ya sure that'd be cold.


It was nice to all be in church together this morning and as Pastor Scott said it was nice to have Shannie with us - it was wonderful to see her smile from ear to ear. She's coming back from her drug haze day by day. We sure miss our smiling interactive big girl, but the glimpses of her real self are coming through a bit each day as we ever so slowly back off the powerful drugs she's needed. So, far she's coping well and we pray that will continue.

A wierd night

It was my turn at 4AM last night. First I got confused about which meds she was suppose to have and started squirting one kind of med into another kind's bottle. I caught myself before I mixed 1 ml. into the wrong bottle. So, then I went in to give her the formula and meds and could not get the g-tube to flow. Once in awhile a little chunk of pill might get stuck so I used just a water syringe to try to push it through, but no luck.

I had to wake Mark up and see if I just wasn't strong enough, but no it was totally stuck. Next step is to take out the fluid in the balloon which anchors the g-tube into her body. It came out like pink med mixed with formula - wierd. So, he did it again - same deal. Shoot, for some reason it was pulling her stomach contents out rather then just the clear water that is suppose to be in there. I pulled on the G-tube and it came right out. We only have one spare, which we used, so hopefully it won't do anything crazy till they can deliver a new one next week. There is a picture of the kit with the new g-tube and one of inserting the new one.

Incredibly in the 11 years she's had a G-tube we've never had this problem. Why this week of all weeks and the middle of the night of all times? I got nothing - no really, I've got nothing.

Our grandson and his daddy came over to run the back yard - heat and all. I plan to enjoy his amazing energy and perhaps can gain some just by watching him. OK, probably not, but it will bring a smile and that's always good for the soul.

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.

Day 6 - A set back

It's been a busy couple of days. Yesterday was looking very good - her G-tube was switched back from the temporary G/J tube, her drain tube was removed as was one IV and tube feedings had started - very slowly, but all systems were a go. We thought we were on track to come home on Wed.

One little issue came up Tues. when the surgeon's resident was insisting on having an x-ray taken with her sitting on a stool - mind you she had only been in her chair once and for less then an hour, not to mention she never sits much straighter then 30 degrees. So, I said - not going to happen. I had several nurses and the PT all agreeing and a call was put in to the surgeon that also agreed the pics should be taken sitting in her chair. I felt a little like a naughty girl looking for that guy all day to say nana boo-boo - Mommy 1 - Resident 0.

During the night last night, my turn, they had to turn the feedings off as her little tummy got very swollen and hard and she broke out in a sweat. After X-rays they could see her intestines were full of gas and so all feeds were stopped and the IV started to flow again. As I left tonight she was more comfortable and we finally saw a little smile before we left as her dear Linda is spending the night with her. We are blessedly home together for about 12 hours and are looking forward to an awesome and comfortable night's sleep.

Thought some of you would enjoy the before and after photos. How she tolerated that horribly crooked little back I'll never know. She is one tough cookie.

Another good night

Last night went well for Shannie. My 54 yr. old body did not appreciate the very uncomfortable sleeping arrangements, but complaining just seems really lame when you look at what she's dealing with. She was up in a reclining wheelchair for an hour last night and did really well.

Tomorrow will be a big day - the drainage tube in the back will be removed and the dressing removed and replaced. They are also planning to adjust her chair to her "new" and hopefully improved body. This will likely require several in and outs of the chair which just can't be comfortable. So, we forge ahead. Our girl is just such an inspiration to all of us of perseverance and courage.

Thanks again for all the prayers - they are very much appreciated and definitely making a difference.

Too funny

Just talked to Mark about how the night went. It went super well. They came in during the night and put the vibrating vest on again. Mark woke up to it and couldn't figure out where he was - thought he was on an international flight to Singapore and all the little lights were instrumentation in the plane :-) I suppose that was a disappointment for him - he loves to travel.

Anyway, they didn't know he was listening and Shannie was making little ah noises with her mouth open and the respiratory tech and nurse said she sounds like a little lamb - which is Mark's nickname for Shannie!

He said this morning - I've got to say my biggest fear of her having extreme pain just hasn't happened. This hasn't been true with her previous surgeries, so it's been a huge relief. Now, if today's switch of meds still holds it - that will be totally awesome.