Sisterly love

Tonight Ella and some friends from church were together for bible study and as they shared prayer requests Ella shared about Shannie's hospital bed, which led to a discussion about the accessible bathroom we - and by we I mean Mark - are working on. One of the girls asked about how Shannie uses the bathroom and Ella promptly responded - "that's classified". Funny girl - way to protect your sister's privacy Ella.

We spent several hours undoing Ella's hair today. Hopefully, we can make an appt. sometime over the next week for a redo. It sure was nice to have a ready to go hair do every day. She kept saying how much she missed her hair and how special she felt with it and now she felt just like everyone else. Oh, Ella, you are so not like everyone else.

I think tomorrow we will try weaning off of the every 4 hr. dose of Tylenol. It's hard when Shannon is unable to tell us ahead of time whether she thinks she still needs it or not, so trial and error is our only course. We can also remove the main bandage, but the steri strips will come off slowly and surely - slowly is usually our experience.

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.

mostly good day- a few rough spots

For the most part it was a good day. She moved out of PICU and onto the regular floor. She had two bouts of low O2 levels which required suctioning - not a fav. This evening they also used a BD vest which basically pounds your chest area with air, if you will. Wasn't sure how uncomfortable that'd be, but she tolerated it well. The follow up suction was hard, but daddy said after I left she was sleeping deeply again.

Tomorrow is a big day. She'll be off the PCA - patient controlled analgesic, which is controlled by her caregivers in her case. Basically that means she'll be off instantaneous pain relief and will be backed off of the harder narcotics till tylenol holds her pain. Also, they will begin her tube feedings which will be via the new G/J tube. So, praying all those changes go smoothly and she won't be too uncomfortable. Also that her "bowels" - sorry if that's TMI - will wake up, if you will. Very important.

Daddy is there for the night and tomorrow. A few siblings will visit tomorrow evening and then it'll be my turn again. Her big bro Jonathan will spend Sun. with her so we can go to church - if she behaves herself ;-)

Pretty good night

Good morning - it was a pretty decent night for Shannie. She spent some time on each side and is tolerating it well. Her oxygen levels kept dropping, so they put a mask by her with O2 and that did the trick. She hates coughing even when she's well, so they've had to suction her some which isn't too fun.

They just removed her aerterial line and will be moving her out of PICU and onto the regular kids floor. That will be very nice, although it's been very comfortable here as well. The PICU is brand new - she was the first patient when they opened the new PICU at the U about 6 yrs. back. This is a habit that really needs to be broken ;-) Everyone is always so thrilled with their new digs and we're trying to be gracious "guests".

so far so good

At first sight Shannie looked pretty rough. Her face is pretty torn up from the tape and was also quite swollen from laying on her stomach all that time. We saw her incision which is from her neck to the base of her spine, but amazingly looks pretty clean.

I had to laugh, incredulously, when the surgeon's assistant - called a fellow - said something like she looks pretty good. For real? I think it might have been one of those things you say and then hit yourself on the head later, but for crying out loud think first man.

Shannie is doing incredibly well right now. She has pain, but it seems to be well contolled and the nurses are right on top of it.

Mark went home to be with the rest of the kids and will be back tomorrow for a 24 hr. stint. He had spent all day yesterday here as well, so was anxious to go home I think.

Thanks for all the prayers - we surely appreciate them.

She's almost done.

We just talked to the surgeon. It went very well. She lost 2 pts. of blood which is about 1/2 of what she has and was to be expected. One pt. of donated blood was given and about 2/3 of her own pint was cleaned and put back in. The rods went in beautifully. Cadaver bone paste was used to secure the rods into her pelvis. He said we should expect she'll look different - longer and her hips may look more tilted as she's been compensating for her out of whack back.

He thought they would remove the intubation as she's done well - which would be awesome. I will take the first night and Mark will get some much needed sleep. Then tomorrow we'll switch. She will be in PICU for about 2 days he said.

A unexpected and wonderful surprise was running into our favorite social worker who was here with her niece. So nice when God plants those little lights into your, otherwise kinda gloomy, days.

I'll try to update after we see her, but sometimes it can get pretty crazy once we get to be with her.

She's in

Shannie went in to surgery right on time. After talking with the surgical nurse, surgeon, anesthesiologist etc. we were again struck by how involved this is. She will have a central line and an arterial line as well as all the other tubing that goes with surgery. There is a 10-15% chance she will need the intubation and respiration tubes to remain in after surgery - we are really praying that won't be needed as her gag reflux is so strong she really hates that.

Last night as we were bathing her according to the new standards - all clean towels, new bar of soap, clean bedding and jammies - we were saying how it felt a little like Abraham must have felt when he took Isaac to the mountain. We know Shannie knew something was up, but the details are a mystery to her. It feels a little like taking an innocent lamb to slaughter.

We should receive several updates during the day and will try to post if the computers are available.

Anticipation - and I don't mean the good kind

There are certain events in life with which the anticipation is as much a part of the enjoyment of the upcoming event as the event itself. Weddings, vacations, birthdays or big anniversaries and such. Other events create an anticipation wrought with anxiety, fear and trepidation. That is the event for which we are gearing up.

On Wed. Shannon will be having her G-tube switched into a G/J tube in anticipation of her surgery Thurs. She is having posterior spinal fusion - which means rods will be installed into her back from the top of her spine to the bottom. Her scoliosis has created two 60 degree angles. Besides the pain in her back that it is creating she has pain in her left hip and left as it is pulling her femur out of her hip socket. She has already had two surgeries to correct that situation. Hopefully, this surgery will prevent or at least slow down the need to fix her hip again.

I love this quote from Mother Teresa - "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." Amen sister! I'm sure I'm not the only one who has times where you just want to say - really God you thought I could handle this? Maybe I'm the only one, but I'm pretty sure it's universal.

So, I will attempt to update anyone interested in Shannon's progress over the next few weeks via this blog. There are computers at the hospital we can use if they are available. Either Mark or I will be at the hospital at all times. Our wonderful church family will be providing us with excellent food during this time too. This morning a time of prayer was set aside for Shannon and we were very touched by all those who joined us. Knowing our church family is keeping us covered in prayer is very reassuring.

Shannon is such a blessing to so many people and sometimes how she impacts people is really amazing. I know Mark and I have learned so much from her and know these next weeks and months will again be times of growth for us all - literally for her as the surgeon predicts she'll gain 2 inches as her spine is straightened!

Summer field trip!

I promised myself this summer I wouldn't let it slip by without taking advantage of all the fun free things there are to do. My plan is to find a new place to explore weekly and we thought it'd be fun to concentrate on the Mississippi River and all there is to see and do in, around and about it.

Today we went to Lilydale Regional Park - Jacob, Ella, Jill and I. We didn't park quite in the right place, so had a pretty long trek, but, that's not necessarily a bad thing. We started at "Bruce Vento's View". We saw a waterfall, Echo cave and a brick oven, went fossil hunting and walked to Pickeral lake. There were many signs along the way to learn about what we were seeing.

I'm so glad that, save a few exceptions, Ella and Jacob have a blast together. When we were raising the first batch of kids they had little need for friends, pre-teenage years, as they were content playing with each other. So far, that is usually the case for Ella and Jacob - they are really compatible and just have a blast together.

Mark has been uber-busy working on Shannon's new bathroom. It is a huge undertaking and as with every project in this old house has tons of bumps along the way - nothing is ever plumb. It is only 3 weeks until her surgery - spine fusion - a very serious surgery for the 60 degree curves, 2, in her back.

Next week Mark and I are going to Chicago to visit good friends for 3 days - a post-wedding/pre-surgery getaway if you will. We are greatly looking forward to it and trying not to get too ahead of ourselves thinking about the immense impact Shannon's surgery will forever have on our lives.

Today - we had lots of fun exploring!

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.

Survival mode

So, we're half way through Christmas break. I know I should enjoy it, but sometimes I just get tired.

Callie woke up at 4AM today and was just about to get back to sleep at 5 when the alarm went off for Mark to get Shannon off to surgery. So, I got Shannon ready while hoping Callie didn't wake up the rest of the house and Mark got ready to go. After Mark left - I checked my phone and Jonathan had called. He and Jill were going to Las Vegas for a grad celebration. Well, their cab didn't show and they were panicking. Thankfully their place and the airport were all on the way to the hospital. Apparently with all the increased security they just made it.

So, it took until about 6:30 for Callie to fall back to sleep and by then I couldn't. Nothing more frustrating then trying to fall to sleep.

Shannon's surgery was to remove her the plate which was put into place after her hip surgery last year. It has really caused a lot of pain over the last year and we are really counting on it relieving that. She also had botox and phenol injections which help with her spasticity. She is such a trooper, but it's been a tough year for her.

Here's hoping for a restful night - pretty please.