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.

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.

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!