SamBeller.org

Monday, September 18, 2000

Pneumonia Bummer!

Dearest Sam’s fan club,

I was hoping to update you all on all good stuff regarding Sam going back to school. However, presently, Sam is in Medical City’s Pediatric ICU with pneumonia. It snuck up on him with a bad fever on Sunday night (9/17) and increased heart rate and breathes per minute. We took him to ER Sunday evening and they admitted him to ICU. After breathing treatments and excessive Oxygen usage, they hooked him up to a ventilator (easy to his trach). They also suctioned out tons of stuff from deep in his lungs. We didn’t even know that much was in his lungs! He started breathing easier and was calming down. He was still moaning a lot - so tired and the fever was making him uncomfortable. They gave him something to take the edge off and he started to sleep finally. On Monday morning, the fever broke and he slept well. He still has a lot of stuff in his lungs. The initial tests showed an elevated white blood cell count and bacteria in his lungs. So, he’s fighting something off. But, hopefully, it’s just bacterial - so it’ll respond to antibiotics well (vs. viral).

By Thursday, we hope to have him off the ventilator and just using the BIPAP machine (also assisted breathing - but less). At that point, we need to have the docs replace his med-a-port (permanent IV site that is clogged) - a short surgical procedure. Then, by Monday, we should be able to go home to finish the IV meds there (with some home nursing).

Family and friends are helping with Tevah, Jacob and Simone. David is trying to go to work during the days. Kelly and Ursula (our nanny) and Cara (our nurse friend) are all taking turns with Sam care at the hospital.

Please pray for speedy recovery, no complications or additional infections, easy replacement of the med-a-port and the ability to come home soon.

Also, with another aspiration pneumonia, we are faced with the decision regarding the removal of Sam’s salivary glands. The doctors are still encouraging us to do this. It is a relatively new way to treat aspiration pneumonia. It makes us nervous to remove glands and change his anatomy more! Please pray for wisdom for us.

We covet your prayers in all of this!

more updates to follow…

love to you all,
David & Kelly

Tuesday, August 08, 2000

Sam's Eye Surgery Update

Thanks to all of you who were keeping Sam in your prayers. He did really well with the surgery - no complications, no problems with anesthesia. Almost a week out, his eyes are still red and sensitive to light. However, he’s feeling good and wants to do most of his normal activity.

The surgeon, Dr. Priscillia Berry, was quite pleased with the whole thing. However, in his post-op appointment, she noted that he still wants to pull his eyes up. She said that a Neuro-Opthamologist may be able to test and give insight into this Sam-peculiar eye movement. So, we will follow up with another doctor in a few months. Please continue to pray that Sam’s eyes heal and he’ll be seeing better than ever. His eyes are still sore and he’s not moving them as much right now.

A downer part of the surgery was they tried to access the port-a-cath (permanent IV site in Sam’s rib that we had surgically placed last November). It was clogged and now we must do a day surgery to re-do that… ugh. Please pray that this all goes well.... this probably won’t be scheduled until later in September.

But, mostly, Sam is just his easy-going, patient, lovable self. He is such a sweetheart and puts up with this stuff so willingly. To celebrate the success of the eye surgery, we went to Dallas World Aquarium after his post-op appointment. He was really trying hard to see all those fish, a big octopus and the scuba diver who was feeding the big fish. He was also very interested in the Rainforest there and the “Red Howlers” - monkeys who are very very loud.... he thought that was quite funny. He also thought it was hilarious when Mom got stuck in the Aquarium parking lot downtown and had to turn around a bunch of times ... he was giggling up a storm - little toot!

Much love,
David & Kelly Beller

Friday, July 28, 2000

Sam's Having a Great Summer

Dearest Sam’s Fan Club:

Sam is doing great! He has been very healthy with only minor issues in his health due to overheating or overtiring. (But who doesn’t have problems like that with Dallas summers? Speaking of the heat, the whole family had a fabulous time a couple Saturdays ago at the Dallas Zoo for Sam’s cousin Luke’s 3rd birthday party. Sam loved seeing the animals while we pushed the “monkeys” around in strollers. David’s brother and wife generously paid for all of it: admission, parking, lunch, etc. Thanks Luke!

Sam still has nursing from 8 to 8 each day. We love Nancy as she is very good with Sam, respects his person, is very detail oriented and helps with some of the administrative like ordering supplies and medications. Awesome!

We believe Sam is fully recovered from his scoliosis surgery. The infection around the incision officially was healed on June 29th - a full 3 months since the surgery - much longer than anticipated. However, Sam is delighted that he can take real tub baths again and no more dressing changes - pulling tape off him everyday! We are so thankful.

For now, we are all agreed that the trach should remain in ... get Sam through a winter and see how he does with it and how well we can keep him with the trach in. It does add a sense of security to ensuring he has a safe airway. We suction secretions out of the trach throughout the day with Sam and it helps to remove aspirated stuff from his lungs.

Sam’s use of Oxygen has really diminished. Occasionally, while we are away from home, Sam’s Oxygen saturation levels drop (from being allergies, pollution, change of environment). So we still take Oxygen with us where ever we go. But, we actually only use it may be once every two weeks. So, things keep getting better. We hope Sam can manage okay once school starts ... he can’t wait, but it’ll be much more activity than he’s had over the last months.

The upcoming health items are not nearly as consequential as the back surgery, but… Before school starts (Aug 14), we will most likely be doing an eye surgery to readjust the muscles for better focusing and alignment. One of the first warning signs when Sam was a baby was that his eyes crossed and they had a “tic"--he is unable to follow a moving object smoothly. So his very first surgery was on his eye muscles (at 10 mos.). This is the same thing. They have loosened and floated up over the past 6 1/2 years.

The other is more serious. Because of Sam’s inability to swallow efficiently, his biggest danger is that he cannot deal with normal mouth secretions. They slide down his throat and into the lungs. We are currently investigating the possibility of blocking two, three, or four of his saliva glands (there are only four total). We are told that this will eliminate the risk of aspirating saliva into his lungs, which often causes pneumonia. However, it is a very uncomfortable procedure which would result in bleeding and swelling for several weeks. We are trying to find a person who has experienced the surgery so that we have someone to who can tell us what it’s really all about. No luck so far. Please pray for us to find that person quickly. Again, we petition your prayers for this decision, in general. Removing the salivary glands is permanent and we don’t want take away natural advantages that saliva adds to Sam’s health (teeth, thinning sinus secretions, etc). We just want to make the best decision on Sam’s behalf and fear unexpected results or side-effects.

Thanks to some friends who painted Sam’s room in late March (David and Jana Myer and friend), we had a perfect foundation for stenciling fish, shells, crabs and starfish all over Sam’s walls. The colors are great: one side is the beach in tan colors, the other is the ocean in light turquoise with a rainbow of fish. We had lots of fun doing it and Sam’s room is very cheery. Having the nurses help with Sam gives us the time to do home projects like this ... it’s been great.

Sam’s been having a great summer. We did get him in a wading pool a couple of times. Kelly holds him while he’s on a small floatation pillow. He loves floating and kicking his legs. It’s a little nerve-racking as we have to be absolutely certain that we don’t get water around his trach sight since it would just seep in around the trach tube and into his lungs. Yikes. Sam’s doctor told us to do what we felt was safe and that we were comfortable with ... driving in a car is dangerous every day too ... we didn’t want to deny Sam the joy that he finds in the water.

Sam’s friends at church gave him a Half-Birthday party (his real birthday is in January). We had half a cake on half plates with half napkins. The kids played games, pushing Sam around in his wheelchair and being silly. Everyone had a great time. The kids even had a prayer time for Sam while they all circled around, laying hands on him. We are so grateful for such a loving group of folks. Sam loves all that attention.

Unfortunately, Benjamin Weaver, Sam’s friend, is moving to Fort Worth. Benjamin helped get rid of boredom while Sam has been home so much. We will be very sad to see Benjamin and his sweet family move away.

In general, we are loving life. Baby Simone is crawling & pulling up to standing, Jacob is talking (and screaming) more and better. Tevah is becoming an excellent singer and dancer and loves to do shows for our various houseguests. We are truly blessed with each other and with you! Thanks for all of your continued support: in prayer, money and otherwise. After the crazy eight months from last October through June, we are very pleased to be able to relax a bit and live normal life for a while…

We’ve received so many wonderful emails, letters, and drawings from children. Thank you all for so much continued encouragement!

Love you,

David, Kelly, Sam and the crew

Thursday, June 01, 2000

Starting A Summer of Strength & Healing

Dearest Sam’s Fan Club,

It’s been almost a month since we’ve sent an update to our ever-faithful webmaster, Chris. I guess that means we’re, once again, being consumed by life’s normal activities. Yeah!

Now 2 months since the scoliosis surgery, Sam continues to recover well. We learn more about his new life with the trach and a straighter back all the time. The infection on his back is almost resolved. Can’t believe these little buggers are still there - healing is constant, but slow. Two of the three holes in the incision have closed up and new skin is healing more every day. The third and biggest hole has “filled in” with new tissue, but new skin still needs to heal over the tissue. We’ve now perfected the art of tearing tape off his back without making him cry (jiggle the skin, peel the tape and sing a LOUD silly song).

We still have a day nurse (8AM - 8PM). It is still great help to have someone helping with Sam because of the busy schedule Tevah, Jacob and Simone keep.

We no longer have night nurses coming to the house. Insurance denied continued coverage - however, we were feeling like we were ready to handle it on our own anyway. Our big concern about nights has been Sam’s inability to vocalize as much since the tracheostomy (the trach tube get’s in the way of air flowing over the vocal cords). We wanted to make sure that we could hear him cry when he needed help at night. Sam has found a solution to this! At night, he has a BiPAP machine hooked up to his trach. This forces more air in every time he inhales (helps to excercise the lungs while he sleeps and discourages partial collapsing of any of the lobes). With the BiPAP on, Sam figured out how to redirect the air and can force it over his vocal cords - what a smarty pants. All the hospital staff thought this would be impossible. So, this means that we can hear him cry, moan, coo, laugh or whatever he’s doing in his room. We now feel it is safe to have his door closed and just listen for trouble over a monitor.

Sam finished up his homebound teaching. He really enjoyed his teacher, Linda Rindler. They had lots of fun talking in rhymes, learning about the ocean and other fun stuff. He’ll now enjoy the summer with his regular 7 hours of various therapies spread out over the week. Sam’s school is gearing up for Sam coming back for 2nd grade in August. They committed to have a nurse soley devoted to Sam (in the classroom with him 100% of the time). This is a great relief and will ensure that Sam will be safe at school.

Sam was able to use his supported walker a few weeks ago. However, he’s out-grown it!! His new height since his back surgery pushed him over the limit. He seemed to be very sore afterwards also. So, we’ll order the new one and wait to put him in it again.

Sam’s friend, Benjamin Weaver, is still coming over to the house on a regular basis. He brings books, videos and cool stuff to share with Sam. Sam really enjoys his sweet friend very much.

We’ve decided that even though the back surgery was really hard on Sam, the benefits are worth it all. However, the tracheostomy was more of a life change. There pros and cons to it. We ask your prayers to know whether or not we should keep the trach in. It can be taken out and the hole will close up. There are several benefits that the trach can give to Sam. One being, the abillity to suction in the trach keeps aspirated secretions out of his lungs is nice and Sam can actually cough out the trach hole (he doesn’t have to work so hard to cough stuff up to his mouth - where it might be aspirated again). In addition, the BiPAP hooked up to the trach is a lot easier than wearing a BiPAP mask every night (Sam hated that).

One of the down-sides of the trach is the challenge it presents in water. Because it is a direct and open entrance to his lungs, it makes us a little nervous to even get Sam in the bath tub. However, Sam has always loved swimming. We’d hold his head and he could float and do a wonderful flutter kick and frog kick. However, the thought of swimming where kids could splash on him or we stumble in the pool while carrying him seems risky. We are really mourning the loss of swimming and hoping that we can find out if there is a safe way to do this with Sam.

We still have to use Oxygen for several hours at a time 1-2 times each week. At times, Sam cannot maintain enough blood-oxygen saturation levels. We see this more now with the trach. We’re not sure if he’s still experiencing pain from his back healing or if this will just go hand-in-hand with the trach or if there is another cause. We never go anywhere without Oxygen for this purpose.

A big worry with the trach is the added risk of infection (since there is such direct access to the lungs). And there are just complications that can pop up. Like last Friday, when the nurse moved Sam from the floor to the wheelchair, the trach popped out of his neck (we think the trach tie was too loose). It seemed to injure his neck on the way out and the hole immediately swelled up. The nurse couldn’t get it back in and it bled a lot. Kelly was at work, but came home immediately. Ursula, our nanny, did her best to keep things calm and keep Sam safe. Two other home health nurses tried to assist in the situation. However, after all the attempts to put the trach in, Sam was bleeding and very stressed. We had him on oxygen and finally decided that we needed to get him to the hospital to have them put in a smaller trach (baby size). The safest way to do that was via 911. So, 3 hours later, in ER, Sam finally had a trach tube back in his neck. David met us there. We took Sam back home and he was wiped out. He was so sore for the next few days - it was a lot for the little guy to endure.

So, we ask your prayers for God to guide us through this medical maze so that we can make the right choices for Sam.

Like we wrote in our last update, we know that someday Sam will swim, will talk, will run .... will be fully SAM!! Today’s problems are temporary and are just inconveniences in the grand scheme of eternal life! A friend once told us that if eternity were like 365 days of the year, life on earth would only be 24 hours long. Some day it will be hard for us to remember what it was like for Sam to be sick and weak.

For so many of you who have served the needs of our family through tough times with Sam, we thank you for all you’ve done. We know that God will bless you greatly. There are so many families in need and we are grateful that you have all given so much to help Sam and our entire family with your love, talents and gifts.

“Come, you who are blessed by the Father, take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, ... I was sick and you looked after me. .... I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.”

You have truly washed the feet of Christ as you have taken care of us all.

Much love to you all,
David & Kelly Beller

Thursday, May 04, 2000

Sam's Recovery Continues

Dearest Sam’s Fan Club,

Sam continues to recover well. He still has the 3 “holes” on the lower part of the incision. Every day, the nurses change the sterile dressing covering them. They are still quite alarming to look at - just weird to see open spots in the skin. However, we see more and more new tissue growing and less infection. The antibiotics have really helped to speed the healing. Sam just requires Tylenol a few times each day for comfort. Mostly, he hates the dressing change because the tape ripping off is just no fun!

We still have nurses at the house 8AM-6PM and 11PM-7AM. We pray that this will continue for some time to come until Sam is able to sleep through the night well and his incision is completely healed. It sure is nice to have extra help with Sam’s care duties - so that we have more time for the fun stuff with Sam.

Life is moving along for all of us. Simone turned 6 months and is sitting up! Jacob is potty-training (playing “sink the cheerios” in the toilet). And Tevah lost her first tooth. Many milestones are being achieved around the Beller household. And Sam is no different.

Homebound school has started for Sam. He really enjoys the books and art projects he gets to do with his teacher, Linda Rindler, from Richardson ISD. We hope to get him in his walker tomorrow with his physical therapist. It has straps that go around his trunk, a strap between his legs and arm supports. Then he can initiate small steps. We have to help him follow through with the steps. However, when he’s on concrete or tile, he can even propel himself around a little bit - he loves it!!

A sweet boy from church, Benjamin Weaver, has taken it upon himself to be Sam’s friend. He’s a year older than Sam. Tami, his mom, brought Benjamin over Tuesday after school. We hope that Tuesday afternoons will be for Benjamin and Sam for some time to come. Benjamin brought over his soccer trophy and team picture, a book to read to Sam and an Adventures in Odyssey video. Sam was really happy to have a friend his age over. Benjamin read to him for a long time and when he had to go home, Sam cried. Sam misses his friends at school so much. I think he’s more lonely than we know. Benjamin is really filling a need Sam has for friends - sweet!

Whether it’s on Earth or in Heaven, one day, when Sam is completely healed, he will be talking to all of us and saying, “You know when I was real sick and couldn’t even sit up on my own or speak? Thank you so much for being my friend. Thank you for care for me. Thank you for reading me books. Thank you for playing with me.” I can just hear the humble and sweet spirit that Sam will have as a man some day. This time of disabilities is only temporary. Tevah always reminds us about when Sam is healed. She’s always talking about doing things with him in the future - “When Sam is healed, this and when Sam is healed, that.” And he will be some day.

Thanks much to everyone’s love and prayers,
Kelly & David and the gang

Wednesday, April 26, 2000

Sam's Gettin' Busy

Dearest Sam’s Fan Club,

Sam is still overall doing amazingly well. He rarely used Oxygen in the last week. He still has pain from the infection and continued healing. However, his spirits and motivation to do normal activity are high.

We went to the Center for Wound Care at Medical City Hospital on Monday. The two dime size holes and one quarter size hole are still present. However, new tissue is starting to form. They said that it’ll take a couple of weeks for things to look significantly better. We go back in two weeks. In the mean time, the surgeon started Sam on some systemic antibiotics to help fight the infection that is in these areas. It still looks awful to us - but the Wound Care folks were pleased that a tiny bit of new tissue was apparent.... more baby steps forward.

Our big treat this week was that Sam felt good enough to go to church on Easter Sunday. It was his first real outing - doctor appointments don’t count. He enjoyed being out with the family again and seeing his friends at church. He was all smiles. And the nurse who went with us said that it was such a nice group of people there that she’d attend if she lived closer. Preston Road Church always leaves that impression on folks. Sam will mostly stay close to home until the infection is gone - however, Easter Sunday seemed like a great time to take him out and worship our Healing Lord.

Sam will start homebound school this Friday, April 28. The Richardson teacher will spend two hours on Fridays and two hours on Mondays helping Sam with his work. We want to try to do a little catch up before the next school year begins in August. He’ll be glad to be doing more ... but he really just wants to get out of the house! Oh well, we are thankful for the problems we have!! Boredom is a good problem to have.

David went back to work this week - one week earlier than planned. Kelly’s also back doing her normal (part-time) work this week. With nurses still present at home (18 hours/day), we can manage things a little easier. And, our faithful nanny, Ursula, is back in full swing, slinging diapers, serving Spaghetti-Os and bathing dirty ears. With Sam doing so well, we are all trying to get more “normal” back into life again ... never thought sitting in rush hour traffic would be fun.

To our astonishment, more money for the Friends of Sam Beller Fund came in from David’s office and Kelly’s office and various other anonymous sources. We have been so blessed by everyone’s concern for Sam and your generous hearts. We feel the responsibility that goes with such gifts to use it in ways to help Sam’s life ... and very thankful to pay those bills! We are grateful to have financial stress lifted while helping Sam through the hospital stay and recovery.

We ask for continued prayers for the pseudemonus bacteria to subside on Sam’s back so the incision can heal in a clean and healthy manner.

May God bless all of you for your love and concern you continue to have for Sam.

Love to you all,
Kelly & David