My Family

My Family
Here we all are!

Wednesday, July 28, 2010

A full plate

It's another week when we just have too much on our plate to finish and we're totally stuffed. It seems as if every time we think we've finished one course someone brings us another one. Some of the courses are delicious and enjoyable and some are bitter and poorly seasoned.

Jacob has a spot at a charter school which is a delectable dish. Ella now moves to the first in line for her grade, so hopefully she will get in this year as well. She is not as excited as Jacob as she has good friends at school she doesn't want to leave, but as social as she is she will do just fine. The only stickler is the school is year round and starts on Aug. 9. We had some fun stuff planned for Aug. he will miss, so hopefully that won't cause him too much angst.

Last night there was a thunder storm and Callie girl HATES thunder. With her sensitivity to sound - especially unexpected ones - they are just terrorizing. She ended up sleeping with her "ear muffs" - Peltor sound protectors. She had them on all night. It's so sad to me as I love a good thunder storm.

Hopefully today will be a day to finish a dish and get closer to dessert - I LOVE dessert!

Saturday, July 24, 2010

Me First!

Mark and I were listening to a story on the radio that Brad Pitt and Angelina Jolie are both pilots but never fly together - just in case something happens so there's a parent left for the kids. I looked at him and said - no way we're doing that because neither one of us wants to be the one left behind to take care of this crazy bunch! If we're going down - we wanna go together and let these adult kids of ours sort it out. Sorry kids - it's payback time.

Thursday, July 22, 2010

Woo-Hoo Shannie

Well, today's goal of backing off of the meds has been a HUGE! success. She had her last dose of Tylenol almost 12 hrs. tonight and the same for one of the anti-spasm medications. What a relief! We were so worried she would be uncomfortable without them, but she's doing just great. What a tough cookie.

After taking Ella's hair out I was having trouble getting all the tangles out - so had to have more instruction from the daughter-in-law who is personally in the know. I should have washed it before trying to brush and then comb it out. 9 years dealing with her hair and I'm still learning - either I'm really slow or it's really that much work. I chose #2 since most black women pay someone else to "fix" their hair too - not so much into the do-it-yourself hair.

Last night our electricity went out about 4AM and didn't come back on till almost 8. Callie and Christian had speech, so had to be out the door before that - so they grabbed breakfast on the way and were a little messy, but they got there. I was soooo grateful it came back on before Shannie woke up and I had to open the fridge for her food. We are also well, as in water well, people - so no electricity, no water. Never a good thing to be without in our house.

So, here's hoping tonight is a restful night. We will give Shannon her nighttime meds as late as possible and hope she sleeps all night - it sure would be awesome to sleep without setting a middle of the night alarm.

Wednesday, July 21, 2010

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.

Tuesday, July 20, 2010

Every time I think I know everything............

It has occurred to us a hospital bed might be helpful in physically dealing with Shannon - you know, before we too need back surgery. As we mentioned the possibility to her new social worker she said - surgery or not she should be eligible. It may sound ignorant, but it never occurred to us to ask.

Wouldn't you think with all the specialists in her life - social worker, physical therapists, occupational therapists, orthopedic specialists etc. etc. - someone might have asked if we needed one? Sometimes I think they all forget - for us - this is the first time we've dealt with all this. When we had foster kids with physical issues - we bought our own lousy bed - and I mean lousy - it cranked and was just kinda icky.

We also need a new bath chair - with the dual purpose of sitting in the bottom of a tub or rolling into an accessible shower. This time, they won't let us even order one until our shower is installed - kinda ridiculous when it works for either. So, the heat is on for Mark to get moving on the bathroom. Poor guy is still pretty tired and has to rustle up the energy to get that going. I'm so grateful we can do this as a team. How exhausting to go it alone.

For now, we have put risers under Shannon's bed legs which at least puts her up to our waist height for lifts in and out. More room under the bed for often used care items and such as well. Right now, Jill is putting some vinyl butterflies and flowers to brighten up her room - the white walls were starting to feel much too hospitally.

Spinning in circles

When you have the variety of special needs kids we have the time and attention that these past two weeks we have taken for Shannon is bound to affect some of the other kids. For those who have attachment issues it brings back those feelings of abandonment when we are away so much and even when we were home our attention wasn't on them.

We have had meltdowns the likes of which we haven't seen in probably a year with one. Between the demands of summer school, which I'm sure doesn't help his good feelings of self esteem as his learning disabilities make school a huge stressor and the time away he is falling apart. So, we try to scrap up a little extra energy to give the one on one attention that they need and pray it's enough for now.

Then we have our goofball daughter spinning around in the living room - I think my head actually feels that way right now. Between weariness and so many chores and information circulating my brain is definitely overloaded. Maybe I should join her next time - at least that kind of dizziness goes away.

Sunday, July 18, 2010

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.

Saturday, July 17, 2010

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.

Thursday, July 15, 2010

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.

Wednesday, July 14, 2010

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.

Tuesday, July 13, 2010

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.

Sunday, July 11, 2010

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.

Saturday, July 10, 2010

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.

Friday, July 9, 2010

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".

Thursday, July 8, 2010

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.

Wednesday, July 7, 2010

And so it begins

Today Shannon will go to Gillette to have her Gastrostomy tube changed to a Gastrostomy/Jejunostomy tube or G/J tube for short. It is done in the X-ray department via fluoroscopy. It shouldn't cause much discomfort, but all procedures cause anxiety for Shannon as she's had so many and becomes very anxious as soon as we walk into Gillette, well really any doctor office. She can't have any feedings after 8AM and the procedure is at 11, so hopefully she won't be too hungry. We gave her some Diazepam or Valium to help her muscle tone and also, hopefully, to help her relax overall.

Mark and her brother Jonathan will accompany her today - many strong arms will be needed. After the procedure they will meet with the PICU - Pediatric Intensive Care Nurse - to tour the area and get any questions answered. Then the lab for some blood work. This is always tough for her as she is generally a hard poke, as they say.

Tomorrow our day begins at 5:30AM when she gets her last feed and we will arrive at the hospital at 7AM. Her surgery is scheduled for 8:30AM and expected to take about 5 hrs.

We have those mixed feelings of dreading tomorrow and anxious to get it over with. It's been hanging over our heads for about 4 months now and so in some ways, at least I, am ready to get it over with. The getting over with it part will just be a long time - about a 6 month recovery time.

We know it will be months before every move in bed, in and out of her chair, in and out of the bath will be done with any kind of comfort. It seems selfish to even mention, but after her hip surgery it was almost 6 months before we could care for her without causing her some kind of pain. It's a slow process from extreme screaming from every movement to cringing, but it takes a toll on her caregivers - a different kind then what she's experiencing of course, but a toll nonetheless.

Sunday, July 4, 2010

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!