SamBeller.org

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