SamBeller.org

Wednesday, April 05, 2000

YAHOO!

Dr. Bobechko said to announce on our website, “YAHOO!!!”. He said that Sam has turned the corner and headed toward Easy Street.

Sam had a great morning on Wednesday. His bowels are “waking up” - so no intervention is needed and we are so thankful.

They didn’t do an x-ray this morning, so we’re not sure how that collapsed lung is looking - Sam’s still acting less than norm, so we assume it’s still partially collapsed.

Sam’s off the ventilator (YEA!!!) and transitioned to continuous use of a BiPAP machine (helps inflate his lungs when he breathes). He still needs extra oxygen also. His lungs are producing a lot of secretions right now and so we’re suctioning him a lot - which he’s not thrilled with. We still have a ways to go before his lungs can handle being totally on their own. However, he’s moving in the right direction.

Sam seemed to have a little less pain today - every day really does make a difference. He still is really uncomfortable when we move him - however, once he’s in place, he can get pretty comfortable. Their going to try to wean him from the heavy narcotics and go to just Tylenol with Codeine in the next day or so.

And the latest amazing piece of Sam trivia is that he grew 2.75 inches as a result of the surgery. We knew he’d grow some since he’d be stretched out straight ... and so he did! He looks a little thinner around the middle since his love handles are stretched out now!

Thanks for everyone’s prayers, the last 24 hours have been good to him.

Please pray for his secretions in his lungs to dry up, continued good tummy functions, and decrease in pain.

Thanks much,

Kelly & David

Tuesday, April 04, 2000

More Updates on Sam

Quick update ...

The ICU doctor gave Sam some heavy drugs to zone him out yesterday and used a big needle to drain 2+ ounces of fluid from his right side (slipping inbetween the ribs). The following xray showed the lung was expanded more and the fluid was gone. He breathed well on the ventilator over the night, taking many breathes on his own.

However, the xray this morning showed his right upper lobe was collapsed a little. The respiratory therapists are working on that side a lot today to try to get his lung health back up. Please pray for his lungs to regain function and for no more complications so we can get him off that ventilator!

He still has no bowel sounds (intestines are still asleep from the surgery). He’ll have to remain on IV fluids until his insides wake up. There’s nothing really to do except wait that one out. Please pray that this problem will resolve itself quickly so he can get on regular nutrition - this will speed up his recovery.

Therapists are working to get him some activity (as much as you can when all hooked up). This should help his recovery as well.

I’m feeling better today - although, I’m not going back until tomorrow morning to be sure I don’t take any germs to Sam. Thank you for prayers on our behalf. In the meantime, David is doing double-duty at the hospital and Ursula (our nanny) is staying nights with Sam.

Hugs to all of you concerned folks.

Kelly

Monday, April 03, 2000

Updates on Sam

Dear Friends

Doctors have found a pocket of fluid in the newly available space where Sam’s right lung should be expanding into. This is keeping Sam from being able to use the full capability of his lungs. A procedure is planned to numb the site and draw out the fluid with a needle. Hopefully Sam’s lungs will then expand to fill the space before it fills up with fluid again.

Good news: Two of Sam’s three IV sites have been removed, and the incision site still looks really good and dry.

Kelly woke up this morning with a sore throat and sinuses and is therefore “banned” from visiting Sam until she is better (Sam is highly vulnerable to germs and viruses right now.) This is obviously very painful for her to not be able to be at Sam’s side.

So please pray for the pocket of fluid to go away and for Sam’s lungs to be strong enough for him to breathe on his own. And also pray for Kelly to get well ASAP so she can resume contact with Sam.

Love,
The Bellers

Sunday, April 02, 2000

Sam's Web Site is a Big Hit!

We thank everyone for lifting Sam up to our Lord & Savior.

Well the news of Sam’s website is spreading across the Pediatric ICU at Medical City. The staff has been telling us that they’ve been “cruising” Sam’s site - guess not every pediatric patient has their OWN website! We like making Sam’s presence a BIG deal so that everyone has an opportunity to find out what an awesome little boy he is.

The PICU doctors, Mattson and Sandell, have been the primary doctors watching the big picture of Sam’s recovery. Dr. Sandell gave orders to discontinue Sam’s pain medicine this morning. As of 10:00 this morning, Sam’s been only on Tylenol, given to keep his temperature down. He seemed to be ready for the “challenge” and handling the discomfort well - frowns every so often but pretty easy to get him to smile. He’s tough! Dr. Mattson said that we can give him meds if he becomes uncomfortable as the drugs slowly get out of his system. We hope to keep him off the meds so that he can be more alert and handle food in his tummy instead of via the IV.

The PICU staff has come to know Sam quite well. We have many favorite nurses and respiratory therapists who do a great job with Sam. It’s really hard to let people “mess” with your child all day when your used to being their “one and only” - they are sensitive to that fact and take a lot of input and grief from us.

Our pulmonologist, Dr. Mandujano, tested the waters today by removing the ventilator for a minute or so. Sam did breath on his own. However, he still has a lot of drugs in his system and when he gets into a deep sleep, he “rides” the ventilator and doesn’t breath much on his own. We hate to see that - it’s scary to not seem him breath on his own. However, as the drugs get out of his system, he’ll do more and more on his own. We’re hoping to wean him completely from the ventilator on Monday. Dr. Silver (partner) takes over doing hospital rounds this week and will see us through the weaning process in the next few days. These two doctors act as Sam’s primary physicians since most of Sam’s health issues are related to his lungs. We depend on them a lot to get Sam well and keep him well. They’ve done a great job with him since before he was 2 years old.

Our surgeon, Dr. Bobechko, came by late morning and was pleased to see that he still has had no bleeding from the incision site. The dressing is still clean and dry - amazing! He’ll keep Sam on antibiotics until we leave the hospital (who knows when that will be). He wrote orders to sit Sam up today ... so we finally got to do it and Sam did great. He didn’t want to lie down again for 2 hours! He got mad when I tried to lower the bed. We just kept him up in bed, put on his glasses and let him watch TV. We then reclined the bed more and he took a nap in this position. Sitting up will also help wake up his bowels.

Dr. Bobechko said that healthy scoliosis patients who have undergone this surgery are required to go up and down stairs 1 week after surgery and they must do this before they can go home - although, went sent home, they are still very “green around the gills”. Sam will definitely be progressing at a snails pace for the next month or two. Sitting up is the first step.

No more signs of internal bleeding are present. No more blood transfusions have taken place since the day after surgery. The swelling all over Sam’s body REALLY went down in the last 24 hours. Sam’s face looks more like Sam again. He can actually open his eyes by himself now!

We’ve had so many answers to prayer ... all in all, this surgery and recovery has been easier in the first few days than we could have imagined. I look over my prayer list and see how much God has been caring for Sam, restoring him. What a relief to just get past each milestone. Our next one is to get Sam off the ventilator. It’s been 5+ days and we sure hope that Monday is the day.

The week before the surgery, we prayed with many different people about Sam, with Sam, over Sam. We prayed that God would be Sam’s ventilator, that His breath would be sustaining Sam. He’s been so faithful. Sam’s pulmonary status has been amazingly stable considering the blow it took during such a tough surgery. Now, we pray for the Lord to breathe strength and health into Sam’s lungs so that our little guy will be able to breath on his own.

Pray for breath today…

love,
Kelly & David

Saturday a Great Day

Dear Friends:

Overall yesterday was a great day, with mostly just normal challenges (sort of like what it was like to get up this morning after losing an hour of sleep, yuck!) Sam was resting alot. He slept so hard and soundly that his blood pressure dropped down to 60 over 45 range. Talk about snoozing! Sam was very groggy and sedated today, even though we reduced the amount of sedative and pain reliever twice. For the first day post-op he hardly had a waking moment. We did get a smile out of him when Kelly made his stuffed animal, Spot, dance around.

Finally at about 3 a.m. he woke up and had a “conversation” with Bubba, his special friend and babysitter. Hurray!

We’re trying to get him to be able to stand up or sit up in bed, but the surgeon and other doctors are not ready for that, mostly because Sam cannot tell us what he’s feeling. One doctor said, “Well, we can do lots of things, but it will cause hellish pain.” Obviously, that’s not what we want, so we’re trying to be patient. The surgeon may change the dressing today or tomorrow, but the incision is still very fresh and blood free. Also good news.

His platelet count is still a bit low, so his trach. is still showing more bleeding than usual. The intensivist ordered a round of additional tests to ensure that his coagulation was working right and balanced. Other blood stuff was normal including the one looking for any infection. His blood is getting good oxygen, too.

Please pray for Sam to really wake up today (within his ability to tolerate pain) and for him to breathe more on his own. Most of yesterday afternoon he was “riding the ventilator,” which means he was resting and letting the machine breathe for him. It was the first time he hadn’t initiated his own breaths and we had to increase the vent. settings, so we were a bit concerned. But the doctors and nurses assure us that he is doing exactly as he should, getting good rest, and that he will breathe independently in his own time.

Please also pray for (especially) Kelly’s and David’s emotions and anxiety. We have been worried about Sam for years, more intensely since November. The stress of the surgery itself is over, but all the pent up frustration can erupt at inconvenient times (how’s that for diplomacy?!). We have never been down this road before, but the medical staff has. It’s old hat to them, but frightening for us! We just ask that you pray for our ability to relax and to trust.

It’s also important for us to be able to communicate our knowledge of Sam. Pray for help in that department. Yesterday we went round and round about an issue (suctioning), then finally realized we had left out an important part of Sam’s story (that he is unable to swallow, even when healthy). Oops! So pray that the Bellers and PICU staff will be able to share what we each know. I think everyone, especially Sam, will be more comfortable then.

This has gotten long. Sorry. Thanks for all your prayers and concern and other stuff! You’re wonderful!!

love, David & Kelly

Saturday, April 01, 2000

Stable Day on Friday

Dear Friends,

We are pleased to announce that Sam had a stable day on Friday ... you guys really ARE praying, aren’t you?!! God is so good.

The drying agents have kept his lungs clearer. Although he’s still bleeding some from the trach, we hope that’ll settle down over the next 24 hours or so. His blood is running a little thin (not clotting as much) due to all the transfusions. They are talking about possibly needing platelets for him to help the clotting.

Sam hasn’t needed any more blood transfusions in the last 36 hours - so the internal bleeding from the surgery must be slowing down (so something must be clotting!). Praise God!

The ICU docs lowered his sedative and narcotics today and Sam handled it very well - no crying. They say that each day really makes a difference. They lowered the ventilator settings and he’s breathing more and more on his own all the time. We hope to get him off the ventilator on Saturday!! We sure hope that’s the case.

We didn’t sit him up today as he was still so sleepy. Hopefully, we’ll do that on Saturday. His face is still so very swollen and sitting him up should help all the fluids move around to the right place!

Richard & Janie Beller have been such an incredible help during the last week. The ship is running smoothly at home (the carpets even got cleaned today!). It’s amazing how well the 3 little ones do when there is real continuity in their care. They are wonderful with the kids and do it all while we attend to Sam. With our extra helpers too, they’ll be able to see Sam at the hospital tomorrow for a little while.

Although Saturday is expected to be a hard transition day for Sam as the medicines are weaned down to lower levels, the surgeon said that by Sunday we should really see him perk up as all the stuff gets out of his system.

Many thanks to everyone who is lifting our Sam up in prayer. God is so faithful to the desires of a pure heart.

Sam’s verse we chose for him when he graduated from children’s worship was Philippians 1:20

“I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage, so that now as always Christ will be exalted in my body, whether by life or by death.”

Christ is exalted in Sam’s body. Sam brings people to their knees and gives them reason to talk with the Lord. Through Sam, many lives have been blessed greatly.

We know God honors prayer. He is just and good. Thank you for lifting our Sam up to Him.

We do believe God loves Sam MORE than we do. Sam is His created child. And we live with the hope that someday Sam will be fully restored and will live in health, whether here or in heaven ... one day, running and jumping will be his game!

love to all,

David & Kelly