2007

31 Dec

1/1/07 – Sammy is still sick. He isn’t worse, but he isn’t much better either. He had a nice, restful sleep for about 6 hours today, so we’re hoping to see some improvement tomorrow. As far as Grandpa goes, he is still in the hospital in the progressive care unit being closely monitored for blood pressure, heart rate, oxygen levels, apnea, etc. He went to the hospital to have surgery on his neck, but other complications have developed which prevent him from being discharged. He may remain in the hospital for several more days as doctors determine the cause for his symptoms.

1/7/07 – Sammy is beginning to feel better, but he’s definitely not 100 percent yet. Grandpa is now home and recovering from his recent hospital stay.

Although I try to keep Sammy’s website focused on Sammy rather than considering it a “blog” and allowing it to become my own personal soapbox, I did want to comment on the “Ashley Treatment” which has become a hot topic in the media and among bloggers. Ashley is a 9 year-old child who has been diagnosed with “static encephalopathy of unknown etiology”. She doesn’t have HPE like Sammy has, but in many, many ways, she is very much like Sammy.

Two years ago, we made the difficult decision to remove Sammy from life support believing that his body was shutting down. It was an excruciating decision, yet I know that it was the very best decision because we put our faith in the Lord and made the most unselfish decision of our lives. Looking back two years later, I sometimes ask myself, “What were we thinking?!”; “How in my right mind could I have ever agreed to remove his life support?!” We made our decision based upon love and prayer, and I hope that Sammy’s continued survival is proof that we made the best decision for him.

I’m not here to judge Ashley’s parents, and I can’t say whether they have made the right or wrong decision. I do know, however, that they made their decisions with love and devotion to their daughter. When it is a decision made in love, it’s the best decision.

1/23/07 – Go Colts! At halftime of the Colts game on Sunday, Sammy wanted to go “scooter-boarding”. The scooter board is basically a flat board on four short wheels which allows Sammy to lie on his tummy while the board supports his upper body and allows him to use his legs for crawling. He has been using his scooter board a lot recently, and during halftime of the Colts game, he managed to scoot himself through our entire house, going farther than he’s ever gone before! After witnessing Sammy’s determination and willingness to persevere, we were thrilled to see the Colts do the same thing in the second half. Now, Sammy wants to know if there’s a Super Bowl for scooter-boarding too.

2/2/07 – Sammy’s first ear infection. Can you believe that he went nearly four years before he ever had an ear infection? He has made up for lost time, however, because both ears are infected! He’s been very, very fussy this week which is so out of character for him.

Even though he is feeling yucky, one thing that seems to make him happy is his TJ BearyTales, an animated bear which plays games, sings and tells stories. One of Sammy’s favorite stories is called “Scaredy Bear of the Dark”, and it involves using a flashlight which is Sammy’s newest favorite thing. This particular story appeals to him because one of the characters in the story is “Sammy SpaceBear”, and he definitely recognizes the use of his name! Sammy especially likes it when TJ says, “Sammy Wammy!”

2/26/07 – I’m so sorry that I’ve been lax in providing updates. Basically, no news is good news. There were times in the past when I could have published updates 2-3 times a day because Sammy’s health situation was so moment to moment. These days, he’s busy with preschool, therapies and the occasional follow-up appointments with various specialists. We are still considering the Vagus Nerve Stimulator to help control Sammy’s seizures, and we’re currently awaiting pre-approval from the insurance company. Once that approval is received, we will schedule the surgery to implant the stimulator.

We have been talking very seriously about remodeling our house. Each day, the house feels smaller and smaller, and Sammy’s equipment is getting bigger and bigger. If we add on, we can have a bonus room specifically for Sammy’s therapy equipment and also an accessible bathroom for him. Because of the smallness of our bathroom, Sammy usualy gets a “bed bath” rather than being able to sit and play in the bathtub. He enjoys baths in the bathtub, but it’s just difficult given the small space.

Now, a “bed bath” may sound like something that happens in the hospital, Sammy’s bed baths are quite luxurious. We actually refer to them as the “spa treatment” because he gets his hair washed 2-3 times including a head massage. Then, all of his parts are washed and dried using a big, fluffy towel. Because he sometimes gets ingrown toe nails, it’s not uncommon to see Sammy lounging with his feet in a bowl of warm water. If he’s been fingerpainting, he’s been known to have his hands in bowls of warm water too. After the bath, he gets a full-body massage with lavendar scented lotion, and lastly, he receives an application of Twinkie flavored lip balm. Let’s just say that Sammy is the cleanest child in the neighborhood!

3/6/07 – Sammy went to the circus on Friday with his classmates from school. Because of his wheelchair, we were able to sit down on the floor just in front of the 3rd ring. The view was great, but we were almost a little too close to the tigers for my comfort! Sammy enjoyed the elephants, the Thunderdome stunt riders, and the trapeze show.

Please keep Sammy’s friend, Rachel, in your prayers. She is scheduled to have surgery at 9am tomorrow at Riley Hospital, and the surgery is anticipated to last 4 hours. Rachel is very near and dear to our hearts.

3/26/07 – Sammy is enjoying his Spring Break! Because he goes to school on a year-round schedule, he gets 3 weeks of Spring Break, and today begins his second week. He just finished two weeks of antibiotics for an h pylori infection in his stomach, and he’s a different boy now that his stomach is feeling better. He’s full of smiles, and he has become such a flirt!
Sammy started Augmentative Communication therapy several weeks ago, and he is now beginning to work with a switch that he can activate by turning his head. The switch is connected to a communication device which contains recorded messages. As an example, as Sammy gets ready for school each morning, we can record messages on the switch which will encourage him to communicate and seek interaction from others he encounters during the day. Here’s an example:

Sammy activates the switch and it says, “Good afternoon. How are you today?”
[awaits response from someone]
Sammy activates the switch and it says, “Isn’t it a beautiful day?”
[awaits response]
Sammy activates the switch and it says, “Guess what I did last night?”
[awaits response]
Sammy activates the switch and it says, “Mommy, Daddy, and I went outside and I had so much fun riding in my wagon.”
[awaits response]
Sammy activates the switch and it says, “It’s been really nice talking with you.”
[awaits response]
Sammy activates the switch and it says, “See you later, Alligator!”

4/3/07 – It’s been a rough few weeks in the HPE community. Sammy’s friend, Rachel, is still hospitalized from her surgery on March 7. Complications arose in the hours following her surgery, and as often happens, one thing led to another. Hopefully she will be discharged later this week. But, we’re keeping that a secret from Rachel because as soon as she hears the word H-O-M-E, she seems to do something that keeps her at the hospital longer. Since March 7th, we have had four of our Indiana children with HPE hospitalized at Indianapolis hospitals.

Our hearts are very sad this week as Sammy lost one of his many friends with HPE. Last year, we posted a photo of Sammy with Sage from Springfield, Illinois. Sage and Sammy look so much alike that they could easily be mistaken for twins! Sage developed pneumonia last week, and passed away on March 30. Rachel’s mom and I drove to Springfield yesterday for Sage’s calling and to offer our support and love to her family.

In memory of Sage, Sammy and I wanted to share something that we wrote about Sage last year in celebration of her second birthday.

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Sage is a very popular flower grown in Central Illinois providing year-round color and splendor to indoor and outdoor settings.

Sage is a perennial favorite which makes a lovely addition to life’s garden. She thrives in a safe, nurturing environment with sunlight and plenty of space; may be found frequently near playgrounds and pools.

Sage can be grown in a variety of settings, but prefers to take root in a familial garden where she is sheltered by others who will provide comfort by wrapping their long arms around her while sowing seeds of patience and hope.

For optimal growth, provide essential nutrients daily, with additional vitamins as needed. Water frequently, but be careful not to underwater or overwater. When oversoaking occurs, change bedding as soon as possible.

Sage tolerates cool, contained environments and shows low tolerance to high temperatures. On summer days, appreciates a light misting with water to prevent overheating. Always hardy in turbulent conditions and has been known to remain resilient even through tornadoes.

Although a beauty year-round, Sage’s optimum grandeur is revealed on July 8 of each year as all of the flowers in the garden turn toward the brilliance emanating from her and rejoice at her presence and inclusion in life’s garden.

4/4/07 – It’s Spring Break for Sammy, but he is still finding time for a few community service projects. Yesterday, he joined the North Central Kiwanis Club to help fill 5,000 Easter eggs with candy in preparation for the Kiwanis Club’s annual Easter Egg Hunt for children and families in the Nora area.

4/7/07 – Sammy is gearing up for a lot of fun over the next few days. Tomorrow is Easter Sunday, and Sammy’s birthday is only 3 more days away! Today, he colored Easter eggs, and he thought that was great fun!

4/8/07 – Happy Easter! We had hoped to attend church this morning, but . . . Sammy didn’t sleep last night. His nurse had to wake us at 2am to seek our direction because he had thrown up, was having a lot of seizures, and his tummy was really bloated. By morning, he had thrown up again, was still awake, and the seizures had continued. Something is not right, so we will be calling his GI doctor later this morning.

4/10/07 – It’s Sammy’s birthday today! The downside is that Mommy won the Jury Duty Lotto and must report for jury duty today. Sammy was born at 12:27pm, so technically, if I get dismissed from jury duty by Noon, I won’t miss his birthday at all, and I’ll still be able to participate in his celebration at preschool. If I get selected to sit on a jury, the party is over, so to speak!

Update: It wasn’t much of a birthday celebration for Sammy today. He wasn’t feeling good, so he didn’t go to school afterall. I, on the other hand, did such a “fabulous” job at jury duty that I was selcted as a juror, and I get to go back again tomorrow for the second day of a 2-day trial! It’s interesting to see how our judicial system works, but Sammy’s not too thrilled that I’ll be away from him.

4/11/07 – Sammy is feeling much, much better today! He had occupational and physical therapies today, and after some really good stretching exercises, he was back to his usual flirty self! Yesterday, he was doing some jerking movements on the left side of his body which were obviously uncomfortable and frustrating to him, and his physical therapist believes that the jerking movements were muscle spasms.

Because he didn’t feel good and I was so tired last night, we decided to celebrate Sammy’s birthday tonight instead. We took him to The Tie Dye Grill, and of course, he had to wear his tie dyed shirt. Then, we stopped by to visit Sammy’s friends at the CVS Pharmacy. It sounds strange, but it was a momentus occasion for us. Can you believe that we have been getting Sammy’s prescriptions at this CVS since he was four months old, yet we have never taken him inside the store?! (Thank goodness for the drive-thru!) As you might imagine, Sammy provides this CVS with a lot of business, and anyone who has worked very long in its pharmacy is familiar with Sammy. They are so familiar that we actually include the CVS Pharmacy on our Christmas card list each year, and there is a photo of Sammy taped up somewhere behind the counter. Sammy has developed a relationship, so we thought it was high time that we took him inside for an in-person meet and greet with the pharmacy staff.

5/14/07 – Mother’s Day was very relaxing and low-key this year. Sammy has a double ear infection, so Sammy spent most of the day cuddled up in my lap getting lots of TLC!

When I remember my first Mother’s Day, it was quite a contrast. Sammy was only 4 weeks old, and he was still in the NICU recovering from the devastating infection to his intestines. Just a few days prior, I had been taken via ambulance to the ER suffering from chest pains, difficulty breathing, and extremely high blood pressure. I was diagnosed at the ER with reflux and anxiety. (Back in those days, most of our meals were prepared by friends or church members . . . do you know how embarrassing it was that this attack happened after eating a meal prepared by my then-boss’s wife?!) On Mother’s Day, my hands and feet began itching uncontrollably, and my skin and eyes had turned yellow! The “reflux and anxiety” a few days earlier was actually a gall bladder attack, and I had developed jaundice!

On Mother’s Day that year, Sammy’s grandmas and grandpa came to visit him and spend their Mother’s Day with him. There hadn’t been too many opportunities to hold him up to that point, so I made sure that the grandparents were able to hold him and spend time with him. By the time everyone else was finished holding him, he began having more seizures and had started vomiting. (We later discovered that these were his early symptoms of a fungal infection in his bloodstream which led to a 21-day regimen of powerful antibiotics thus extending his hospital stay!) I never did have an opportunity to hold him on that first Mother’s Day; I itched nonstop; I had turned yellow; and, we had the worst-ever mystery casserole for lunch in the hospital cafeteria!

On that first Mother’s Day, I exercised a priceless gift that has carried me through time and time again . . . the gift of a sense of humor!

5/15/07 – Sammy is happy right now, but by the end of the day, he’s going to be so mad at us! We have been battling ingrown toenails on both of Sammy feet for nearly three years now, and he is scheduled to have a procedure later this afternoon to prevent the problem. In reading on the internet, I discovered that a bacterial infection due to an ingrown toenail can become very serious and life threatening for someone with a pacemaker or artificial joints if the infection spreads to those sites. Because Sammy is scheduled to have a vagus nerve stimulator implanted on June 11, we decided that the ingrown toenails need to be addressed now before the stimulator is implanted. And, once his toes have healed, he will be able to use his scooterboard again!

Update: Sammy did great during the procedure! He didn’t cry, and he sat calmly in Daddy’s arms while the procedure took place. Once again, he impressed us with his bravery and toughness. He may look fragile and delicate on the outside, but he’s one tough little guy on the inside!

5/16/07 – Please pray for Sammy’s friend, J.J. We have been praying for him every night for months, and we just learned that J.J.’s family received the long-awaited call confirming that everything is in place for him to receive a multi-organ transplant. From what we understand, surgery will be performed immediately.

5/25/07 – Sammy had a new experience today! His preschool class went on a field trip to a horse therapy center, and Steve and I went along too. Sammy rode two laps on the back of a horse. The first lap, they had him lying down. For the second lap, I asked them to let him sit up. They used two Boppy pillows for him to lean on, and he used them for support; however, as he finished his second lap and approached all of his friends who were watching and cheering for him, he used his arms to push himself up, and he proudly held his head up and smiled to show how much fun he was having! After Sammy has recovered from his surgery in a few weeks, we hope that we might be able to inquire about Sammy receiving horse therapy on a regular basis.

5/28/07 – Thank you for prayers for Sammy’s friend J.J. He continues to hold his own, and prayers are being answered.
It was a rough weekend for Sammy. He has developed a stye in his left eye, and he’s not very happy about it. We’re hoping that it will clear up and not cause a delay in his upcoming surgery. He was uncomfortable and frustrated by the stye, so we saw an increase in his seizure activity today. He has a follow-up appointment with the podiatrist on Tuesday, and I have a feeling that we may be stopping by to see the pediatrician about his eye also.

6/4/07 – Thank goodness it’s Monday morning, and the weekend is finally over! Our home became an infirmary over the weekend. Sammy had a stomach virus on Wednesday. On Thursday night, Grandpa was vomiting. By Friday at 7am, I was vomting, and by 10am on Friday, Steve was vomiting. Sammy’s Thursday night nurse went home on Friday morning with the same symptoms too. By Friday, Sammy was all better, but Mommy and Daddy were down for the count. It’s the first time when we’ve both been sick simultaneously and unable to take care of Sammy, but Grandma pitched in and kept everything running smoothly.

Please keep us in your prayers this week as Sammy’s surgery is scheduled for next Monday!

6/10/07 – Tomorrow is surgery day. Sammy is scheduled for surgery at 8am, so we will need to be at the hospital at 6am. Sammy is an early bird by nature, so he will probably be awake and ready to go by 5am. We spent the day packing everything we will need for a 2-3 day stay, and it’s embarrassing to see just how much stuff we’re hauling with us. Sammy doesn’t travel light!

The surgery is scheduled to last 90 minutes-2 hours, and he will be in recovery for a while following surgery. We hope to post an update in the afternoon when he’s in his room and things have settled down.

UPDATE: Sammy arrived for surgery; however, the surgery did not take place as planned. Sammy’s trach has presented some challenges for the surgeon and anesthesiologist, and those challenges will need to be addressed with Sammy’s ENT, who may need to be present for the surgery. Proceeding with the surgery until those issues are addressed presents danger to Sam.

At the present time, Sammy is staying at the hospital overnight for observation following the sedation he received in the operating room. The neurosurgeon hopes to reschedule the surgery for next Wednesday with a Tuesday overnight stay for pre-op prep and better IV access. We are pleased that the physicians today were cautious and not overly aggressive in continuing with the procedure.

6/19/07 – VNS Surgery: Take 2 – We’re back at the hospital attempting Sammy’s surgery to have the vagus nerve stimulator implanted. Sammy was admitted today so that a PICC line could be inserted to give better IV access; unfortunately, it has been a very long and busy day for the vascular lab, so he won’t have the procedure for the PICC line until 10pm. It will make for a long night for all of us, but once the line is in, we can go forward with the surgery. The surgery is scheduled for Wednesday morning at 10am. Please keep Sammy in your prayers for a successful surgery. As you pray for Sammy, please include his friend Emma who is also here at the hospital in the ICU with an infection. Emma is one of our precious babies with HPE.

6/20/07 – Surgery went well, and Sammy’s surgeon was very pleased. He will spend the night in the pediatric ICU tonight. At the present time, the stimulator is turned off, but we believe that it will be activated by his neurologist when he comes by to see Sam.

6/21/07 – Sammy is resting comfortably in his own bed at home tonight! He is whining a little and doesn’t want us to touch near his incision sites, but Tylenol does seem to make him feel more comfortable. It’s good for all of us to be back home again. Over the weekend, I will try to update and explain more about the VNS and how it is working for Sammy.

6/22/07 – Sammy had a rough night last night. Today is the second day post-op, and it seems that the second and third days are usually the worst after surgeries for most people. He’s really sensitive to light, noise and touch right now, so we’re whispering and tip-toeing. We’re keeping his room darkened, and he’s listening to soft lullabies which seem to make him happy.

6/24/07 – Sammy is feeling much better today. He is still sore, but he doesn’t seem to be in pain. By mid-week, I think we will be back to our routine again.

7/6/07 – If you have time, check out this Op/Ed from USA Today. It says a lot of the things that I’ve been feeling recently, but what really disturbs me are some of the comments that readers are expressing after reading the editorial.

7/7/07 – So far, Sammy’s incisions are healing nicely following his recent surgery. Yesterday, Sammy had an appointment to make the first adjustment to the stimulator. When it was first turned on following surgery, it was set to cycle every 5 minutes with 30 seconds of stimulation at the lowest amount of current possible. In addition, it also was set to allow us to swipe a special magnet over the pulse generator to deliver on-demand stimulation for 60 seconds. In the days approaching Sammy’s appointment, it seemed as if we were using the magnet more frequently with worsening results. At Sammy’s appointment yesterday, his neurologist analyzed the data provided from the pulse generator and adjusted the VNS settings. Now, Sammy’s stimulator is set to cycle every 20 seconds for 7 seconds of stimulation at the lowest amount of current possible. So far, the adjustment seems to be making a positive difference as he has had only a handful of seizures since we left the neurologist’s office!

7/11/07 – Sometimes I’m absolutely amazed at just how much we have managed to absorb and learn through this journey with Sammy. Over the weekend, Sammy was extremely sleepy. When I say extremely sleepy, I mean Rip Van Winkle sleepy! As the hours went on and the slumber continued, we began to speculate on what might be causing it. The adjustments to the VNS? His recent surgery? A drug interaction? The weather and alignment of the planets?!

By process of elimination, we realized that Sammy started taking an antibiotic last week for a recurring digestive issue, and we believed that the antibiotic might be intensifying the side effects of other medications–namely his anti-seizure medications which cause sedation. I called the pharmacy but didn’t get a sufficient answer to my questions. I then called Abbott Laboratories, the maker of the antibiotic, to inquire about possible interactions. Abbott needed to do some in-depth research based upon all of Sammy’s medications, and in the meantime, I began digging deeper into the internet in my role as “citizen scientist”. I did discover a few drug websites contained warnings regarding a report of a 3 year old child experiencing extreme sleepiness while taking the antibiotic and Phenobarbital. (Ding, ding, ding!!!)

I called the doctor who prescribed the antibiotic, and the doctor decided to prescribe a different antibiotic treatment. Now, he’s getting a lovely little pink cocktail of Flagyl, Amoxicillin, and Peptobismol twice a day! Abbott Laboratories did get back to me and I learned that the antibiotic he was taking goes through the CYP384 pathway which is the same pathway that many of Sammy’s anti-seizure meds go through. I don’t know exactly what that means, but I feel really smart now! As for Sammy, he received his first dose of his new cocktail at 5pm yesterday. By 6pm, he was awake, alert, and happy. By all signs and indications, we could be led to believe that we found a “magic potion”, but I’m more inclined to believe that Sammy heard me pick up the phone and call his doctor, so he realized that he needed to straighten up and fly right! That’s another thing I’ve learned over the years–just pick up the phone to call the doctor, and he will usually behave!

7/12/07 – The switch to the new antibiotic seems to be working because Sammy is awake. Actually, he’s been awake since 4am this morning with few noticeable seizures!

While Sammy was in his sleepy phase earlier this week, we took him to the Children’s Museum hoping that the activities and stimulation might encourage him to come out of his slumber. It didn’t work, and he slept the entire time! Whenever we’re out in the community with Sam, we usually field a lot of questions from strangers. We know that Sam is in this world to be a teacher, so we don’t mind answering questions and sharing Sam’s story–especially when children are the ones asking.

While at the Children’s Museum, Sammy was sound asleep in his wheelchair and was wrapped up in a warm blanket because he tends to get cold when he’s asleep. We were waiting outside one of the Museum’s theaters for a special program, and there was a mom with two children also waiting. The children were probably aged 7 and 5. The 5 year old was a boy, and I imagine that he had been catching glances at Sammy for a while. Finally, his curiosity had gotten the best of him, and I heard him ask his mom, “Is that boy fake or real?”

I had to chuckle when he said it because I can totally understand why he asked; we were at a museum where everything looks real, but usually isn’t real. Aside from babies, how many kids do you see sleeping at the Children’s Museum? When it’s 90 degrees outside, how many kids are bundled up in a blanket? The boy’s mom recovered from her embarrassment quickly and explained that Sammy was very real. I tried to give the mom a smile to let her know that it was okay. At least he didn’t ask the question that a few other children have asked which is, “Is he dead?”

7/25/07 – Sammy has been busy, busy, busy! Sammy’s first day of the new school year was last Friday, so we’ve been trying to get back into his school routine again. We had an appointment with his neurologist last Thursday to make adjustments to his VNS settings, and so far, so good. Since the VNS was implanted, we’re beginning to see changes in Sam that we weren’t anticipating, but they’re good changes. For example, his eyes are opened wider, and he’s visually examining things better. He’s turning his eyes and his head to look toward people and objects. Before, he didn’t physically grasp objects placed in his hand. Now, he’s beginning to squeeze when he feels something pressing against his palm. These are things that newborns do; however, Sammy had so many seizures from the very start that the seizures never allowed his brain the opportunity to do these things. On Friday and Saturday, we’re holding a garage sale at our house with a portion of the proceeds to benefit Families for HoPE, the nonprofit organization we helped to form. (If you’re looking for infant and toddler clothes and toys that were never worn/used or are in nearly-new condition, we can hook you up!) Sammy is helping on Saturday by selling home-grown tomatoes, cucumbers and peppers from our garden, along with some baked goodies and treats. In addition, Sammy will be handing out Families for HoPE flyers to help raise awareness about holoprosencephaly. (Notice that NASCAR drivers are in town this week making lots of public appearances for sponsors and charities, but we have something just as special at our event–we have Sammy Yammy!)

8/13/07 – The heat and humidity has not been a friend to Sammy these past few weeks. Aside from the usual routine of preschool, therapies, and doctor appointments, we have tried to keep him inside as much as possible. If the weather isn’t too hot later this week, we’re hoping to visit the State Fair. Sammy really enjoyed it last year–especially the cows!

8/22/07 – On Sunday, we had the opportunity to attend the annual St. Vincent Women’s Hospital NICU reunion/picnic. It was so much fun to see all of the doctors, nurses, therapists, and staff who were so much a part of our lives just four years ago. It was a great feeling to be able to share Sammy with them four years later knowing that they all truly appreciate his fortitude to overcome such overwhelming medical challenges. We have the deepest respect and gratitude to the entire NICU staff at St. Vs for their Spirit of caring for our special son.

9/4/07 – Life has been BUSY! Two weeks ago, Sammy had his very first sleepover! Actually, Sammy was invited to sleepover at a friend’s house, but we decided that maybe his friend should sleep at our house instead. Did I mention that his friend is a girl?! Sammy now thinks that he’s THE MAN, and he never grew tired of getting hugs and kisses and hearing her sweet voice saying, “I love you, Sammy”. Steve has somehow managed to break a bone in his foot. He doesn’t know how it happened, but he has enjoyed making up elaborate stories about how it could have happened. For now, he’s wearing an aircast for the next four weeks, and if it doesn’t heal properly, he will be looking at surgery in the near future. As long as he can walk, we’re okay. I can’t push more than one wheelchair at a time!

9/5/07 – Sammy is gearing up for the big game tomorrow when the Colts play their first game of the new season. An announcement was made today that “Sammy’s hospital” has been renamed as “Peyton Manning Children’s Hospital at St. Vincent”. Sammy thinks it’s pretty cool that Peyton and his wife want to help kids like him.

9/9/07 – It was a rough weekend. Sammy had an increase in the number of seizures, he was more restless, and he was sensitive to noise. In recent weeks, we have discovered that Sammy is a country music fan, and over the weekend, that was the only thing that seemed to soothe him. While watching “60 Minutes” a few weeks ago, we saw an interview with Kenny Chesney. At one point during the interview, they played “She Thinks My Tractor’s Sexy”, and Sammy thought it was funny! Since that time, he’s definitely showed an interest in country music and with certain songs in particular. His favorite songs seem to be sung by males with deep voices. Sammy is definitely beginning to express his likes and dislikes!

9/21/07 – We finally discovered the cause of Sammy’s recent discomfort and seizures. Last Friday, he had an upper GI scope which revealed yeast in his esophagus. His doctor said that he has probably been feeling a burning sensation in his esophagus, and it has probably been growing there a while. He’s now taking a medication to treat the yeast, and within two doses, he was feeling much, much better! On Tuesday, Sammy went on a field trip to an apple orchard where he picked his own apples, and on Thursday, his preschool classmates and Sammy turned some of the apples into applesauce. It is that time of year again. First the apple orchard, then the pumpkin patch!

9/29/07 – Are you ready to rumble?! Sammy is! Sammy is going to be a wrestler at the 7th Annual Timmy Foundation Pro Wrestling Event on Sunday, October 14 at the Knights of Columbus (71st & Keystone). Tickets are $10 and will be available at the door. This is a great family event with a pro wrestlers show and the main event – DR. DOOM (aka Dr. Chuck Dietzen) vs special needs children from Indianapolis and Louisville. Doors open at 1:30pm, and Sammy hopes to see you there!

10/31/07 – Sammy has an ear infection. Tomorrow, we’re going to see his pediatrician because he’s been on an antibiotic for five days now, and he’s still very uncomfortable. I have a feeling that we will be scheduling an appointment with his ENT sooner rather than later. Sammy’s grandpa is in the hospital–more specifically, in the ICU. We had to call an ambulance for him on Sunday. Many, many tests are being run, but it does appear that his pancreas is involved. His blood pressure has been extremely low at times (38/17), and he received two units of blood on Sunday. Internal bleeding is suspected; however, the cause has yet to be discovered.

11/1/07 – If you have a chance this weekend or next, be sure to check out the Indianapolis Monthly Art House where Sammy will have a piece of his artwork on display. Admission is $12 at the door with proceeds going to Peyton Manning Children’s Hospital at St. Vincent for its Child Life activities. Additionally, Sammy’s piece will be up for bid in a silent auction during the preview party tomorrow evening. Also, here’s a link to a video about the Timmy Foundation wrestling event in which Sammy was a participant a few weeks ago.

11/4/07 – Grandpa was discharged from the hospital on Saturday. He had developed sepsis, and antibiotics are treating the infection. In the coming days, he will have additional testing to his pancreas. Sammy’s ear infection is improving, so that’s good news.

11/9/07 – We learned something new about Sammy this week–he has food allergies. Allergy testing was performed recently, and we learned that he has allergies to eggs, milk, peanuts, and soy. In light of this discovery, we will be transitioning him to a new formula. I guess we can say that Sammy has become a vegan.

11/11/07 – Sammy is having respiratory issues this weekend. His lung sounds are course and wet, and we’re giving him nebulizer treatments every four hours. He’s not sleeping much and is having more seizures, so he’s keeping us on our toes. Also, Grandpa went back to the ER late last night with problems with his pancreas; he’s been admitted for an inpatient stay.

11/12/07 – Last week, our nearly six year-old nephew asked us a question, and we weren’t exactly sure about the appropriate way to answer it. His question was, “Is Sammy going to die?” He has asked me questions about heaven in the past, so I decided to delicately remind him that we are all going to die one day, but we can go to heaven. He thought about this for a moment, and said, “I know that, but is Sammy going to die?” I then told him about how all of the doctors told us before Sammy was born that Sammy wouldn’t even live one day. My nephew then replied, “Hey, they tricked you!” I thought about it for a moment, and then I had to correct him and remind him that instead, “Sammy tricked them!” 4 1/2 years later, and he’s still tricking them on a regular basis!

11/15/07 – We took Sammy to the pediatrician on Monday for wheezing. A chest x-ray showed possible pneumonia in his left lung; however, I’m not 100% convinced because his left lung has always had a cloudy spot on x-rays since he was an infant. It’s obvious that he’s sick, so we’re treating it as pneumonia with antibiotics, steroids, and continued nebulizer treatments. I wouldn’t say that we’ve seen a big improvement, but his condition hasn’t worsened either. If he behaves himself, Grandpa is probably coming home from the hospital today. He still needs additional testing to confirm the exact problem, but the testing cannot be performed while he has inflammation of his pancreas. Over the next several days, he will eat a low-fat liquid diet with hopes that the testing will be possible next week. On Saturday, I’m gathering with a group of HPE moms. Steve calls them my “peeps”. We’re getting together to do some scrapbooking/crafts, chatting, and snacking! I haven’t seen many of them in over a year, and I’m looking forward to spending the day with them. It’s sometimes so refreshing to spend time with other people who speak my language and know what it is like to walk in my shoes.

11/27/07 – Sammy is feeling better, and he returned to school this week after his illness. Since our last update, Grandpa was discharged from the hospital. He managed to get through the Thanksgiving holiday, but returned to the hospital on Sunday afternoon. He continues to have pain due to his pancreas; however, he has also been diagnosed with pneumonia this time around. We’re not sure when he will be discharged. November has been a rough month!

12/5/07 – Sammy has recovered from his illness, and he even ventured out on Sunday to attend the Tendercare Home Health Agency Christmas party. We enjoy this party because it gives us a chance to catch up with old friends who are staff members or patients of the agency, and Sammy always enjoys the opportunity to sit on Santa’s lap and pose for a photo. This year, we think Sammy whispered “iPod” in Santa’s ear!

Grandpa is back home again after a week in the hospital. For those who are counting, this is the third weekly hospital stay in six weeks. During this visit, several residual gall stones were removed which had been clogging a duct from his pancreas. (His gall bladder was removed three years ago!) Since removing the stones, he has been in less pain and discomfort; however, symptoms of pancreatitis continue to persist.

12/19/07 – Overnight on Monday, Sammy started showing signs of an illness. We already had a scheduled appointment with Sammy’s GI doctor for Tuesday morning, so we thought we’d have the GI doctor take a look at his ears, listen to his lungs, etc. in addition to the usual GI stuff. He had vomitted a little yellow/green stuff, and his cheeks were very flushed with a slight fever, so she sent us to the ER to have a chest x-ray and labs.

As it turns out, Sammy’s lab work indicates pancreatitis. (For those who aren’t keeping up, this is Grandpa’s recurring diagnosis too!) The first assumption was that the gall stones in Sammy’s gall bladder might be the cause of the pancreatitis. As it turns out, it doesn’t appear that the gall stones were the culprit, and at this point, we aren’t sure what is causing it. His Lipase levels are decreasing quickly which is good; also, he has stopped vomiting. (At one point yesterday, he was in the true spirit of the holiday season with green and red vomit and that was frightening!) As for how, he is receiving IV fluids and the only things going into his stomach are medications. It is possible that he might begin slow trials of Pedialyte tonight to see how he tolerates that.

As it stands now, we anticipate that Sammy will be in the hospital for at least a few days, but we haven’t even begun discussions about going home. It’s possible that we might be celebrating Christmas at Peyton Manning Children’s Hospital this year.

12/20/07 – Sammy had a good night, and he is tolerating the Pedialyte very well. Later today, he will probably get half strength formula, and we will see how he tolerates that.

Sammy and I did have one moment last night which made me reflect on our journey together. It isn’t easy to hold Sammy on your lap at the hospital, yet he still expects to have cuddle time together. Last night, I sat in his hospital bed, and he sat on my lap. It was in that moment when I realized that I had missed something . . . When Sammy was born, he went directly to the NICU and stayed there for over three months. I never had the experience of having him brought to my room after delivery, and we missed out on those snapshot moments of Mommy holding her newborn baby in her hospital room. As I sat in Sammy’s bed with him on my lap last night, I realized that the moment had finally arrived. It was just 4 1/2 years later, and the baby now weighs in at 47 pounds!

UPDATE: Sammy was discharged from the hospital tonight, and he’s resting at home.

12/23/07 – Sammy is sleeping a lot but seems to be resting comfortably for the most part. It is believed that a gall stone or a portion of a gall stone may have caused an obstruction in Sammy. If we begin to see the same symptoms again, we are to call the doctor right away so that blood tests can be performed. If his Lipase levels are elevated again, his gall bladder will be surgically removed. Sammy is a high surgical risk; otherwise, his gall bladder would have been removed before he left the hospital a few days ago. We did call the doctor yesterday after an episode of green bile coming out of his stomach, and she recommended going back to Pedialyte. So far, he is keeping everything down and Tylenol seems to be helping with pain.

12/25/07 – Merry Christmas! We spent Christmas at home; however, Sammy decided to put in a late night appearance at the ER on Christmas Eve. He was crying/wimpering, showing signs of pain, and producing the green bile again. His Lipase levels were elevated, but only 488 rather than the high of 2400 we saw last week. We were able to bring him home with us, and he is now getting pain medication to help keep him comfortable. Tomorrow, we will take him to the lab for additional tests and see what we do from there.

By the way, Santa did bring Sammy an iPod Nano, and he loves it! While we were at the hospital last week, his CD player and CDs made the stay so much more bearable for him. He listened to Kenny Chesney’s Greatest Hits album over and over again. When we tried to change to a different CD, he would get upset and have seizures. If we put Kenny back on for him, he settled down and stopped seizing. Sammy takes four different anti-seizure medications daily and has a vagus nerve stimulator; who knew that Kenny Chesney would be such an asset for seizure control! As you can imagine, Kenny dominates Sammy’s iTunes Playlist.

12/27/07 – Sammy is back in the hospital again. We had to take him on Wednesday night due to green bile, increased temperature, and the inability to keep fluids down. It was a long night as he just kept bringing up all shades of green and brown bile. The brown fluids were an indication of blood, and blood is never good in the stomach. This morning, a PICC line was placed for IV access, and his GI doctor performed various tests. As it turns out, Sammy has esophageal erosion and that is the source of the bleeding. In addition, he has a hernia in his stomach. For now, a G-J tube has been placed in the stoma where his g-tube had been. As he shows signs that he is ready, he will begin to receive nutrition through the J port which will bypass the stomach and deliver food to his jejunum. We will know more later today or tomorrow about what steps will be taken next.

12/28/07 – It was a rough night. Sammy can’t receive medications into his GJ tube yet so he is getting them in IV form. Two of his seizure medications aren’t available in IV form, so he is getting an IV equivalent. Because he missed several doses of his seizure meds until his PICC line could be placed, his seizure activity is difficult to control right now. He is scheduled for another GI test this morning to ensure that there isn’t an obstruction in his bowels.

UPDATE: The GI test was a small bowel follow-through study. Basically, they inserted barium into this stomach and watched it move through his digestive system. It showed that the barium moved from his stomach into his esophagus, and then it proceeded to sit in the esophagus for a while which explains the esophageal erosion. Next, the barium was inserted into the J portion of his new G-J tube. The barium moved through without showing an obstruction; however, there is one area of his intestine that appears narrow.

While he was in Radiology for the testing, we noticed that his breathing was becoming more labored. After returning to his room, he began requiring more oxygen, his breaths were rapid and shallow, and his heart rate was very high. He was beginning to crash, and we began to suspect that he might need ventilator support. There was talk of moving him to the ICU; however, the ICU was full, and Sammy stabilized a little bit. A pulmonologist came by and his suggestions helped to make Sammy more stable. As of now, Sammy is sleeping; it’s not a restful sleep, but it is sleep. He is getting breathing treatments every 3 hours, getting steroids and antibiotics, but doesn’t need a ventilator. If we try to reposition him or change his diaper, he begins dropping his oxygen saturations and increases his respirations, so we are trying to leave him alone as much as possible.

Sammy is a very sick little boy right now. Earlier today, GI was his main issue; however, that has now taken a backseat to Pulmonary issues. He still has a long way to go, and we’re praying that today was the worst of what we will see during this hospital stay.

12/29/07 – Sammy slept a lot overnight, and I can safely say now that it’s a “restful” sleep. His heartrate is under 100 beats per minute, and it has been days since we have seen that. Today, he will get some blood because his hemoglobin is low, some protein to help with edema, and Pedialyte will be introduced slowly through his J tube to feed his intestines. The G-J tube is great because it still allows him to get nutrition into his bowels without stressing the pancreas by feeding him into his stomach whereby more pancreatic enzymes are required. It will be a busy day!

UPDATE: Sammy spent a majority of the day sleeping, and he needed it. He is awake this evening, and he is getting back to his old self again.

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