SamBeller.org

Friday, February 04, 2000

The Details About Sam's Upcoming Surgery

Date: Friday, February 04, 2000 6:14 PM

We met with the Orthopedic Surgeon on Friday, January 29th to discuss the scoliosis surgery for Sam. Here are all the details - probably more than some of you want to know ... but we’re just passing on what we’ve learned.

Sam’s spine is curved very far to the right (a 64-degree curve). On an x-ray, it looks as if it’s just an inch or two away from touching the right-most part of the right side rib cage. This distortion is changing the shape of his ribs and causing abnormal pressure on his lungs. If we don’t do the surgery, his spine will continue to collapse into a C-curve where the ends of the C move closer and closer together. We saw x-rays of other children like this - and it’s not a pretty site. Just a year ago, Sam’s curve was only 20 degrees. The surgeon felt that Sam’s curve was progressing at such a fast rate, that we needed to move quickly to do this surgery. He estimated that if we opted out of the surgery, Sam would have 3-5 years more to live, as the curvature would interfere with organ function in a much more life-threatening way than it already has. With this grim news, we feel we have no options that are desirable - but feel we must choose to do the surgery. We are hopeful that this surgery will not only give us more years with Sam, but also improve the quality of his life so that he’s not in the hospital every few months with respiratory battles.

We do have another appointment with another Orthopedic Surgeon at Scottish Rite Hospital this coming Monday - but feel that he’ll be in agreement. We’ve talked to Sam’s Pediatrician, Developmental Pediatrician, Pediatric Pulmonologist, therapists and anyone else who knows anything about this surgery. After hearing how far his curve has advanced, everyone is in agreement that this is the best available option.

We’ve tentatively scheduled the surgery for the last week in March at Medical City Hospital in Dallas. Dr. Walter Bobechko is the surgeon we’ll go with, as we’ve learned he’s the most respected surgeon in the area for this type of surgery. After we get insurance approval, we’ll be able to set a firm date.

----------LOTS Of Detail About The Surgery------------

The week before the surgery Sam will stay home from everything (away from germs). He’ll have round the clock breathing treatments (every 4 hours) and CPT (pounding on his chest to loosen mucus). Basically, he needs to be really healthy before going into this surgery. We pray that he’ll be able to remain healthy during these weeks until the surgery.

The surgery itself is about 7 hours long. The surgeon will fuse 15 of Sam’s 33 vertebrae together by attaching a steel rod on either side of the spine and screwing the rods together. The bottom two vertebrae will remain free, he’ll fuse the 15 above those two and then the top remaining vertebrae will remain free. He’s hoping to have the spine nearly perfect. The incision will be 2 feet long - the entire length of his back.

This procedure requires taking bone from his pelvis and from a bone bank (mixing together to do the fusing). Sam will lose a lot of blood during the surgery and in the day following. He’ll require 2-3 units of blood transfusion. Since I’m an O+ blood type (universal donor), I’m going to be the donor and will be donating a unit at a time over the next few weeks.

Before the surgery, they’ll tape Sam’s eye’s shut to prevent some kind of clotting that is a risk during this procedure. They’ll remain taped shut for the entire first day after surgery.

He’ll have IVs coming from the Port (the IV site we had put in him in November) and from the jugular in his neck - access to many sites are needed.

He’ll have leads coming from his head and legs to monitor neurological problems during the recovery time.

There is a risk of spinal infection - but is thought to be minimal and treatable if it does occur (another surgery would be required and extended time on antibiotics).

Because the pain is so intense after the surgery, he’ll be heavily sedated for the first 3-4 days. Because of these drugs and because breathing is difficult when in pain, he’ll be on a ventilator which will breath for him for 4-7 days until the pain decreases and they can wean him off of the drugs and then ventilator.

He will be sat up in bed for a short time on the day after surgery and every day following to make sure everything is okay.

Sam will be on IV fluids and no food through the g-tube for the first 3-4 days. He’ll be catheterized during this time and basically the bowel functions just shut down after such a shock to the body followed by heavy drugs.

As he begins to recover, he can have sponge baths and go fully in water again 2 weeks after the surgery if all goes well. He’ll experience a high metabolic rate for the month after surgery and will just break out in sweat from time to time as his body works to heal.

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He’s expected to be in the hospital 2-3 weeks followed by 2-4 weeks of intense care at home. He’ll miss the rest of the first grade school year. The school may provide some in-home schooling in May. We don’t have that planned as yet.

The surgeon said that this surgery is in the “big leagues”. This will be the biggest blow to his body that Sam will endure (we hope ever!).

Please be praying for health for him now and for every part of the surgery and recovery to be better than we ever hoped.

Love to you all, David & Kelly

Sam's Upcoming Surgery

Dear ones

Kelly penned the following describing Sam’s upcoming surgery. It is divided in two parts: the first is pretty benign, while the second goes into all the gory details of the surgery. Read at your own risk, but I hope you’ll read it all.

Kelly felt that I was not as forthright as I should have been in describing the crisis we faced during the hospital stay from January 11 to 22, 2000. So, I want you to know the serious nature of what Sam is about to experience. But I also want you to be able to censor for yourself the level of detail…

As you might imagine, we are filled with fear and trepidation at the prospect of allowing Sam to “go under the knife” (to put it crudely). On the other hand, we firmly believe that of the two options (1. leaving him as is, 2. surgery), this is clearly the one with more hope. Sam may not do well post-surgery. There is always the possibility that he will not make it through the surgery or that he will be adversely impacted. In the past, his surgeries have always made him lose some particular developmental milestones…

Anyway, feel free to ask more questions, etc..... we love you guys---lots…

Thanks for your kind encouragements and for your prayers as we prepare for the upcoming surgery,

Much love, David

Monday, January 24, 2000

Finally! Sam is Home

Sam is Home!!

After celebrating his seventh birthday in the hospital on Thursday, he decided he had had enough. So he got well enough to go home and sounded good Friday and very good on Saturday. I brought him home Saturday late afternoon.

As you know, his care is still very involved while he’s sick (and even when he’s not), so the weekend was hard and we’re still sleep deprived, but it is so good to see him smile and good to have him home and great for me to sleep in my own bed!!

We appreciate your thoughts, prayers, phone calls, visits, food, coffee and goodies!

The doctor (one of the staff intensivists) came in to check Sam out on Saturday morning and was surprised he was doing so well. He said, “You know, your son was a really sick boy. We have kids die from the RSV and flu combo… You’re very fortunate...” (Gotta love that bedside candor.)

Yes, we are… There were definitely a couple of times while I was packing up his stuff that I had to choke back some tears--- we are so happy to have him home!

Yours, David

Friday, January 14, 2000

Good News on Sam

Sam was able to have the breathing tube removed last nite at midnight and did well throughout the night on his normal regimen plus oxygen…

He is still on heavy duty antibiotics, steroids, and semi-hourly breathing treatments.

He will likely remain in ICU for another week or so. Hopefully we will have no additional crises.

Just wanted to keep you all up to date.

David

Thursday, January 13, 2000

Sam in the Hospital

Our friends:

I wanted to share with you a development in Sam’s health.

Sam had to be admitted to the hospital on Tuesday afternoon. He apparently had another respiratory bug. It turns out it’s a nasty virus (RSV) plus pneumonia. He is really struggling.

Last night he simply couldn’t get a breath even after all the normal measures, so we had to put him on a ventilator to keep him going.

It is intended to be temporary and there are many positive aspects to what seems mostly negative. Already after 8-10 hours they are beginning to wean him off the machine, but it will probably still be necessary for several days.

Email has its blessings and curses. It’s very easy, but also impersonal. Most importantly, it’s fast. I’m sorry I can’t call everyone personally. As always, we appreciate your prayers.

Yours, David