SamBeller.org

Friday, March 31, 2000

Hard Night for Sam

Early Friday morning, Sam had two “crashes” - his Oxygen saturation levels went down into the 40s (should be 92 or above) and he had to be worked on by a team to flood him with Oxygen and suctioned intensively. It seems that excess mucus in his lungs had clogged the trach. The ICU doctors increased the drying agent medicine that should help get rid of the secretions that caused these events.

His trachea is also bleeding from the trach tube rubbing on it (probably because the ventilator tubing is pulling on it).

All these intricate details of the recovery are pushing Sam’s body limits.

Please pray that these conditions stabilize today.

love, David & Kelly

Thursday, March 30, 2000

Post-Surgery UPDATE

Dear Friends:

GREAT NEWS! Sam got through his scoliosis surgery yesterday, and the doctor reports that overall it went very well. Sam did experience more blood loss than they expected, so they had to use 2 units of donor blood during the surgery (not a problem thanks to Sam’s wonderful blood donor angels!)

David and Kelly got to see Sam for a while following the surgery when they brought him back to his room. He was still very groggy, and his face and eyes were pretty swollen from lying face down for so long. Kelly said that when she tickled his toes, they responded—a glorious sign that the surgery has not caused any paralysis, which was a major concern (this type of surgery carries a 20% chance that the patient could be paralyzed from the chest down.)

This morning Kelly reported that Sam has had some internal bleeding and they’ve had to use another unit of blood. Also, he’s had a fever up around 102 degrees. In addition, Sam’s face is still very swollen, and his eyes are swollen shut. This is evidently due to the fluid build-up in his body since his bladder has been “asleep” from the anesthesia. Kelly said Sam became scared for a bit this morning when he was conscious but not able to open his eyes to see them.

The doctors are giving medications to help with the swelling, and they say the sutures along Sam’s spine are in good shape. And he is breathing fine in conjunction with a respirator.

This evening the Bellers report Sam’s fever has gone down to about 99 degrees, and they have not had to supplement any more blood. Bladder functions have returned, so they anticipate his swelling to go down by morning. There is concern about the amount of pain Sam will feel soon as they begin to taper off the narcotic painkillers he’s receiving now. The sutures continue to look good and dry and the doctor is pleased about that. The doctors emphasize that the “complications” Sam has experienced so far are very routine for this type of surgery, but that the fourth day is predictably very hard for the patient as they are no longer receiving the narcotic medications…

The Bellers wish to THANK everyone for their love, prayers, and support through this intense time. They feel it strongly and know it is making a huge difference for Sam, and for their whole family.

Please keep praying for Sam to have a strong and successful recovery. Recovery from this major surgery will be a long time for Sam. The doctors warn that this will still be the toughest recovery that Sam’s body has ever endured, and there are many complications that could still arise, especially given the recent complications he has faced with pneumonia and then the sudden tracheostomy surgery a few weeks before his scoliosis surgery.

Day 2 After Surgery... Bless You and Thank You

Wow ... Day 2 and things are running fairly smoothly ...

Kenneth & Suzanne Kirklin (a.k.a. the Designated Delegators) have sliced and diced the needs of our family and headed up a totally amazing crew of people that help me and David to just be able to focus on Sam. What a blessing!

Laurie Carroll is on the phone, email and fax coordinating our backup system for the three younger kids. The caretakers are making sure Tevah, Jacob and Simone’s needs are met. “Gigi Mason & Associates” have started the laundry service.

Cisco & Kara Perez have graciously loaned their car to us this week so that David’s parents have transportation while they are here.

Our anonymous lady from our church continues to pay Cindy Gage, the sweet lady who cleans our house, paying special attention to keeping dust out of Sam’s room and living areas.

Friends at David’s office, Kelly’s office and a group of people at Preston Road Church are collecting donations for the Sam Beller fund. With David taking the Family Medical Leave, this very unexpected effort going on in the background really REALLY helps relieve financial stress.

Chris, Sam’s webmaster has been “manning” the lines as we call in updates to him. We so appreciate his talents used to help us - he said that the site tracking software reports 250 different folks are checking the web site every day since Sam’s surgery.

We had a loving group of folks sit with us during the surgery on Wednesday. The nurse was calling every 90 minutes or so to give an update. This support at the hospital (and lots of prayer) made the time go quickly. We were sure glad to feel a “backbone” while we waited.

James Gray is one of the guys organizing the “prayer slots” for Sam. Sam (and the entire surgery team) was totally COVERED in prayer while people prayed in 15 minute increments all day on Wednesday. Wow - God heard from the hearts of many.

We are also receiving emails from “friends of friends” via the website, encouraging us and letting us know that they are praying for Sam. It’s amazing and humbling to know that Sam’s needs have spread to so many folks who haven’t even met our little guy.

In general, we can’t quite figure out how so many wonderful people have come into our lives. And certainly are so blessed by the unconditional love given to our family. Thank you to everyone involved!!

Sam did experience about 2 hours on lower doses of narcotics today ... the tears were streaming as he felt the pain for the first time. The ICU doctors were very responsive and increased the dose again right away. With the fluid retention decreasing, he should be more comfortable when they try to start the narcotic weaning process again tomorrow. We’ll probably try to sit him up in bed tomorrow too (yikes). He’s still on the ventilator (hooked up to his trach). However, most of the time, he is also initiating breaths on his own in addition to what the ventilator is doing for him. This looks really good when the time comes to wean him on the ventilator in a few days.

So far, Sam’s lungs are holding out fairly well - there is some fluid built up, but it’s manageable for now.

Please continue to pray for pain management, no more fluid retention and for Sam’s bowels to begin to resume functioning after “sleeping” for a few days. In addition, please pray for the internal bleeding (next to the spine) to not go beyond normal volumes.

Our love and gratitude goes out to all of you.

May God bless you GREATLY for the love, prayer and service you have given our Sam.

David & Kelly

Monday, March 27, 2000

Sam's Pre-Op Update

Dearest Sam’s Groupies

The little guy is so tough. He amazes us. God has given a strong desire to live and strong motivation to get past the yuk so we can all have fun. Sam is a tough cookie.

Sambo has had a rough 3 weeks recovering from the tracheostomy and only in the last 4 days has he really gotten back to regular activity. The doctor said his body is just trying to close the hole created from the trach surgery and is producing a lot of secretions in that effort. Sam couldn’t even sit up without coughing and coughing. We have had to suction him more now than ever before. We’ve experienced 3-5 episodes daily where his oxygen saturation levels drop and we have to pump him up with oxygen and quickly suction him until he clears up. There have been several very frightening moments. Then, as we learned how to handle these situations, the situation became more controlled, but not less frequent or easy.

Finally, Sam’s pulmonologist changed his medicine to up the dose 8 times for one of his prescription meds. We weren’t sure he’d handle it - but he could take it and WOW what a difference it made! He could finally be upright and be comfortable. We’ve used less oxygen as the days have gone on. We feel he’s ready for surgery and strong. We could tell he felt better since he’s been very wiggley in the last several days ... and very giggley ... and very TALKATIVE.

Yes, Sam’s voice came almost all the way back when we got a new trach on Wednesday. It’s smaller and allows air to flow over the vocal cords. Boy, do we love hearing that laugh again. He loves it too. We are so thankful to hear his voice. Although, it’s hard in some positions for him to vocalize, it’s more than we’ve heard in weeks!!

Thankfully, we had nursing staff at the house since his hospital discharge. We couldn’t have made it without this help. We just didn’t feel like we could keep Sam safe unless he had a dedicated person.

We are feeling pretty peaceful about Sam’s surgery. God has raised up an army to care for Sam and for us. It’s truly incredible how many hands are involved in his surgery and time of healing. The Body of Christ is HUGE and loving and we are humbled to be served in so many capacities. With so many people freeing us up and nurturing our family, we have the energy to concentrate on Sam and to deal with the nonsense of life later (like laundry!). Food, laundry, child care, funds to help with David’s family leave, prayer ... so many ways everyone is helping to heal Sam.

David’s mom and dad are here now from Colorado Springs. Richard is staying a week and Janie 2 weeks. The kids are glad there are here and so are we - what a relief! They’ll help care for the 3 little ones and be able to support Sam and us as we get through the rough first few weeks. Kelly’s sister Saphire and her boyfriend Jim will be flying out from San Diego to be the second round of support. They plan on totally spoiling all the kids with activities and, in general, being “slaves” as Saphire put it. Kelly’s brother, Mark, or his wife, Julie, will then come and help out as the craziness probably will continue for weeks after the surgery. We are SOOO very thankful to have family come out and help us get through this valley in our lives.

We are feeling peaceful and just feeling God’s presence and we begin this process. However, it’ll sure be hard to take him from our safe little home to the emotional PICU setting tomorrow. We know God is in control - and glad he is ... because it’s too much for our hearts and minds to figure out. We just truly hope that God is glorified in Sam’s life. Sam brings so many people to prayer ... he is God’s messenger of hope to us, his parents and to many. He’s so innocent, so pure of heart. The nurses who have cared for him have all fallen in love with him. Sam gives more joy from his sweetness than can be measured. We thank God that he’s our child.

Tonight’s the last night for Sam to sleep in his own cozy bed for admitting him tomorrow (Tuesday). I always get sentimental about stuff like that ... wondering what it’ll be like when he next sleeps in his bed ... when will he be back home…

We have a full morning of pre-op appointments at Medical City, ending with a visit with Dr. Bobechko (the surgeon) at 1:00PM. We’ll then take Sam over to Pediatric ICU and admit him for pre-op respiratory preparations and extra treatments.

The Anesthesiologist, Dr. Smith, called again today to talk more about the trach and if it’ll be used during the surgery or if he’ll do a regular intubation for the ventilator. We’ll evaluate more tomorrow when Dr. Smith comes to see Sam in PICU. He seems like a very thorough doctor and very nice man. Please be praying for God’s wisdom to overwhelm him on this matter so that the best decision can be made. Pray that God just inflates Sam’s lungs with His breath of life!

Dr. Smith addressed the need for access to many veins for the surgery. Please be praying that they can access veins easily and in places that are comfortable for Sam during the recovery period. We’d like to avoid having to use the jugular since he already has to deal with the trach on his neck. He’s so hard to get an IV going in and with the need for 2-3 sites, this will be challenging. Sam’s med-a-port that is near his right rib can be used for one of the sites- but is not enough on it’s own for this type of surgery.

We were encouraged to hear that Dr. Bobechko is teaching Russian doctors how to do these surgeries without losing any blood since the are not blood banks as there are here in the States. He’s a leader in his field and is becoming known for his “blood-less” back surgeries. Perhaps all those pints of O+ can just be used elsewhere!!

We are very grateful to all those people who donated blood on Sam’s behalf. It’s a very intimate bond we feel with all of you knowing that your blood could be running in our precious Sam. Thank you!

As the days progress, we’ll be calling Sam’s dear webmaster, Chris, and giving him updates to post.

Thank you again for all the prayers, love and concern.

We’ll see you on the “other side” of the surgery.

love to you all,

Kelly & David

Wednesday, March 22, 2000

Pre-Op News on Sam

Dear Friends,

Sam’s scoliosis surgery is now one week away. He’ll be admitted on Tuesday, the 28th for pre-op activities and the surgery will be 7:30 AM on Wednesday, the 29th. We’ll be starting his more intense respiratory treatment schedule tonight.

Thank the Lord that Sam’s Medicaid program approved some in-home nursing hours. We’ve got 22 hours of nursing daily - that means lots of one-on-one care for Sam and we’re so glad that we have experts in the house to help us learn all the trach care. It’s a little weird having no privacy - but Sam’s in good hands and we’re glad about that. The first week we were home after the tracheostomy, we only had 12 hours approved and the night schedule was wearing us out. We think Sam will have about 2 months of nursing after the scoliosis surgery (starting at 24 hours and going down to 18 hours daily). Please pray that this all gets approved.

Since Sam’s been home from his tracheostomy, he’s had several episodes every day where his oxygen saturation levels drop and we have to flood him with oxygen with an ambu-bag and then suction a lot ( a 2 person job ). Please be praying that these episodes go away so he can be at full strength when admitted next week.

Sam’s also having a really hard time being upright since the tracheostomy. When we put him in his standing frame or wheel chair, he coughs a lot, sometimes has oxygen level drops and in general is very uncomfortable. It may be caused by the trach tube irritating his trachea. We are changing to a softer, smaller tube tonight. Please pray that Sam can tolerate sitting up - he’s got to sit up frequently to recover from the back surgery and just to get back to his regular routine. This tracheostomy has been a lot harder on him that anyone anticipated.

We talked with the Anethsesiologist, Scott Smith, several times in the last few days. We called him to ask if he had a preference as to the type/size of trach tube to put in Sam for the surgery. He hadn’t been notified that Sam had undergone a tracheostomy and was unaware of Sam’s overall respiratory problems. He voiced concerns about how difficult it is to recover from this surgery and was alarmed by the number of times Sam has had pneumonia in the last year. He said that he’d never done this surgery on a child that had a tracheostomy. Needless to say, we became concerned.

Dr. Smith explained the position used when doing this surgery. Sam will be laying on his tummy, with his face down inside a foam “donut” pillow. Dr. Smith typically would intubate (to hook up the ventilator), with the tube coming out his mouth and to the side so he can suction through the ventilator tube. He said it may be tricky hooking up the ventilator to the trach during the surgery itself (because of being face down) and they may just do a regular intubation and then switch the ventilator to the trach during post-op.

Dr. Smith called and talked to our pulmonologist, Dr. Mandujano, and the surgeon, Dr. Bobechko. Dr. Mandujano said that he’d come to observe how things are going during the surgery (to assist with any Sam-unique problems that may arise).

Thanks to wonderful folks at our church, additional child care and meals are being planned to help with this intense time in our lives.

We are thrilled that David’s parents will be coming out on Monday, the 27th (from Colorado Springs). Richard (Dad) will stay 1 week and Janie (Mom) will stay 2 weeks. We are thrilled to have this help with the other kids. Kelly’s sister, Saphire will be coming to stay for almost a week along with her boyfriend, Jim, who is going to help rein in the kids while we’re tending to Sam (they live in the San Diego area). In addition, either Kelly’s brother Mark or his wife, Julie will be coming out for 4-5 days to help also (they also live in the San Diego area). We are so thankful that the kids will have some continuity of care over the next few weeks and grateful for all the expense and time away our family is giving to us.

David resumes the Family Medical Leave next week and will be out of work until Sam is stable enough for David to return (may be up to 9 weeks ... but he’ll only take off whatever is necessary so we can see income).

As we gear up for this big event, please pray for Sam’s health to stabilize and for us to have some relaxing time with the little guy before he’s put through the ringer. We really dread having to put him through this and hope all is better than we ever hoped or expected.

We appreciate Chris (Sam’s webmaster) who was inspired by Sam to create this website and has dedicated his valuable time on his/our behalf.

Thanks to everyone who loves our Sam.

David & Kelly

Wednesday, March 08, 2000

Sam's Surgery Date Set for March 29

Friends of Sam Beller,

Sam’s scoliosis surgery is officially scheduled for Wednesday, March 29th.

Sam should be discharged from his current 2 week stay at Medical City hospital tomorrow (3/9/00). He’s recovering from the sudden Tracheostomy - but the site will not complete heal for another 5-10 weeks. It’s been tough on him and us.

Please be praying for the scoliosis surgery - that recovery will be really intense for Sam. Especially for the following:

- Good recovery of strength and activity post-Tracheostomy
- Health before the surgery
- Comfort (good pain management post-op)
- No infections (of the spine, bone graph area, or other)
- Good blood for the transfusion and Sam’s body to accept it without a problem
- Respiratory health (no resulting pneumonia, collapsed lungs, or other problems)
- To get off the ventilator fairly quickly (within 3-4 days)
- No adverse affects on his ability to move related to the fusing and rods
- No problems with blood clots in his eyes (related to surgery)
- Easy access to IV sites and no related problems
- No related neurological problems related to work on the spine

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

Thanks for everyone’s love and concern on Sam’s behalf.

love to you all,

David & Kelly