Herstory

Her Story Now and Then

Kelli was born in August 1999 in Scottsdale, Arizona after a particularly uneventful pregnancy and delivery. Shortly after birth Kelli started having difficulties breathing and, in fact, turned purple when she was not crying. She was air-evacuated to Phoenix Children's Hospital. The next two and one-half months the good people at the hospital performed every test they could to solve the breathing issues that beleaguered and undermined Kelli's very existence. The final test performed, an open-lung biopsy, revealed that her lungs were seriously malformed, beyond repair, and were unable to sustain life even with a ventilator.

Faced with only two options, removing her from the ventilator and letting her die or attempting a double lung transplant, Kelli's parents opted for the only reasonable choice -- to go for the transplant! Kelli was transported to St. Louis Children's Hospital in mid-October 1999. At only three months and after only 19 days on the national transplant waiting list Kelli received her transplant! This miraculous surgery gave this spirited little sprite what she needed to bloom into the beautiful and full-of-life little girl we had the pleasure of knowing.

A lifetimes of thanks to the unknown family that gave her the chance at life and for giving us the opportunity to have and to share her life with us. While her life may have been short, her life was BIG. Bigger than any picture or words can portray!

Kelli's death was unexpected - she died during our road trip to St. Louis where she was to receive specialized treatment at St. Louis Children's Hospital for her ailing stomach. It is unfortunate, but the doctors here in Phoenix were unable to diagnose and/or treat Kelli's stomach issues. The year prior to her death, her stomach issues had become so bad that she could barely keep any food down and in fact, any food or drink, caused her great pain. At the end, she was lucky if she was getting 300 calories a day. One would think that this would have forced a more proactive treatment plan, but unfortunately, it did not. Many were confused and thought that her lungs were bad and that she required another lung transplant because she was on oxygen. But, without food, she had so little energy it was difficult for her to breathe on her own. In fact, her primary doctor made the same mistake and failed to consider her stomach issues with the urgency that it should have been given. In the end, she did not require another transplant, but treatment for stomach issues most likely caused by years of antibiotic use used primarily to keep her dosage of immunosuppression down. However, this had the simultaneous and catastrophic result of killing her stomach and intestines, making digestion all but impossible. As I have learned in the years following her death, many transplant recipients complain of the same kind of pain Kelli suffered from - all after the use of major antibiotics. How could any doctor fail to treat Kelli, or any patient really, appropriately when the patient, even at 11 years old says, "it feels like a million needles are stabbing me in my stomach and it's twice as bad when I eat something?" So ultimately, Kelli died from malnutrition - yes starvation - not lung failure. So a not so happy ending to her fairy tale story but certainly a warning to other transplant recipients and doctors who need to consider the "whole" body treatment not just the organ that was transplanted!

Words are not sufficient, for language has too many limits - no words can truly express how deeply we, her family, miss her and grieve her transition.

This website is dedicated to her memory, those who followed Kelli's progress and continue to pray for us after her death.

HerStory 2011

February 22, 2011
Sadly, for those of you who do not know, Kelli passed away January 3, 2011. While her years were short her life was long.

It wasn't until now that I could compile my thoughts and notes and place them in an orderly fashion. Putting them down for everyone to see just makes it just so.............final. And, I, quite frankly, am having a tough time saying good-bye. That too, is just too final.

January 4, 2011
Not being of exactly sound minds following the death of our daughter, we had not given another thought to not having an autopsy done until my dad rightly said that we needed to have one done. He said, "Honey, you guys have always had Kelli be part of every research study possible and you need to have an autopsy done now for two reasons. One, because something strange happened and she died from something other than lung failure and you will hate it for the rest of your life that you did not find out why she died and two, because you need to provide an ending for her case study." Knowing he was right, we requested an autopsy.

January 3, 2011
Our plan was to drive the boys to school and then return home to set out on our drive for St. Louis. We were driving because we figured we would need a car while we were there. Thinking that once Kelli gained weight, if she did need a transplant we would be there probably 6 months. We all got up and ready to go and even though it was evident Kelligar was feeling really bad she got dressed and let me curl her hair. She had just gotten a new hair cut a few days prior. She was thinking she didn't want to drive with the boys to school but then changed her mind with my prompting. It was good that she did because she was able to kiss them and love them before we took off and the boys will always have those fond memories of her in her final days with them. I was a mess, crying because I thought it would be ages before Kelli and I returned home. Separating a family is hard, even if you know it is for a great reason and only for a short time.

When we got home Kelli was still feeling bad and we decided that we would not start TPNs again until she started feeling better, whenever that might be. We set off for St. Louis. While we were still in Phoenix and had phone service, I called the pharmacist to ask what we should do if while being on the road her sugar levels remained high after the initial dosing of insulin as it had all day yesterday. I told him the instructions on the insulin bag said to check her blood sugar level after two hours of being on TPNs and to administer to the TPN bag the proper amount of insulin according to the sliding scale instructions provided to us). The pharmacist asked what do you mean add it to the insulin bag? I read the instructions to him and he said that the insulin should be given directly into her arm not into the bag. This made more sense to us as this is what always occurred in the hospital when they checked her levels and it was high. Again, I asked him what we should do if her sugar levels remain high even after administration of the insulin. He said we really needed to let him know so adjustments could be made to her TPNs. With that said, we decided that after her next round of TPNs that if her blood sugar levels still were out of control we would not give her any more TPNs until we got to SLCH.

We made it to the Verde Valley turn off for a pit stop, whereby Kelli had a potato chip and some water. Back on the road sometime later, Kelli sat straight up, cranked her oxygen to high and then said, "momma I don't feel so good". She slammed both hands to her temple, grabbed her hair with her hands and I yelled at her to stop it. She fell back limp and I screamed at Kevin to pull over, and of course, we were on the part of the highway with no shoulder. We stopped and pulled her out of the car and checked her blood sugar level thinking that that was high and maybe that was what was causing her to act this way. Her level was high (290) and we gave her the 8 units of insulin as indicated by our paperwork into her arm and proceeded to do CPR. Luckily we had cell service and EMTs arrived about 10 minutes later. Once in the ambulance we were driven to the Stoneman Lake turnoff (about 45 minutes outside of Flagstaff) and a medical helicopter landed. After working 27 minutes on Kelligar, she was still unresponsive and they called her time of death. But I knew she was dead when I placed her in the EMTs arms. I knew she had died in my arms. I know, because I felt her last breath and her last heart beat. Some say it is a blessing that we could be with her when she died. While part of me says, yes, the mother part of me says, how can feeling the last breath and heart beat be anything near a blessing?

Since she passed away alongside the freeway, DPS was called. We were told that if we had a doctor who would sign off on Kelli then she would not have to go to the Yavapai County Coroner's Office for an autopsy. I provided Dr. Hodges number at HLI to the officers and Dr. Hodges was called and he signed off on Kelli's death. Kelligar was then taken to a mortuary in Verde Valley. As soon as we got home we contacted a mortuary by our house and told them that we wanted her body to be brought back to Phoenix for burial.

January 2, 2011
Today was much the same but she did receive some relief once the insulin was administered into the bag of TPNs, though her sugar level did not come down much and again we weaned her off the bag of TPNs.

Although she obviously felt terrible she was a trooper. She stayed up and played games with the boys and us and even won the final round of Aggravation and then went to bed.

January 1, 2011
As with the first time Kelligar took TPNs a few months earlier, she felt terrible the entire time she was on them. I think the calorie count and all the other additives were just too much for someone who was severely malnourished. Anorexic to be technically correct. She was sick most of New Year's Eve but her daddy got her out of bed and we all put on our party hats and watched the ball drop in New York.

Her blood sugar levels were out of control and the days directly before and after the new year were not fun. She was headachy and sick and stayed in bed all New Year's Day. In fact, she was acting just like she had with the previous run of TPNs and that was what alerted us to check her blood sugar levels. We weaned her off the TPNs with the phone assistance of the pharmacist and the next day we received insulin with instructions on when to check her and how much insulin to administer.

For those of you that follow Kelli's history, I did update 2010 as well. Thanks for always loving Kelligar and for still continuing to hold her in your heart.

HerStory 2010

December 23, 2010

Kelli was taken to St. Joe's for placement of the PICC line. Sorry honey, not a great Christmas present. Since it needed to be done in radiology we had to register. While we were sitting at registration, Kelli said she wasn't feeling great. She was laying kind of slumped over which really wasn't like her. When we finally got in to register, Kelli said that she wasn't feeling well, that she felt kind of weird. So I told her just to lay her head back and that everything would be okay. About that time it dawned on me that we had given her a Marinol tablet and that was probably why she wasn't feeling well. The day prior, Kevin and I decided together that since she was getting the PICC line and in an effort to help her feel hungry we would give her a Marinol tablet that had been previously prescribed for her but had not been given in a while because it did not seem to help. As we got off the elevator and started walking toward radiology she started walking kind of strange and I asked her if she was okay and she answered yes. A lady then walked by and said hi and smiled and Kelli answered with some kind of gobbly-gook. I asked her what that was about and she looked at me like I was crazy. As we were signing her in at radiology, Kelli freaked out. She threw herself to the floor and I barely caught her before she hit it. As I was trying to get her oxygen back on her she took her eyeglasses off and twisted them in half with one hand. She started yelling and cussing and it took every ounce of energy I had to control her. The nurse finally got the idea that this was not normal, after asking me, and assisted me into the waiting area with Kelli. She wanted to call a crash cart but I told that she wasn't crashing and that I knew what was wrong with her because once I sat down with her I could clearly see it. Kelligar was having a "bad trip" from the Marinol. Between losing 4 lbs and also being on oxygen the affects of the Marinol were taking it's toll on her.

As we were sitting there, with my heart racing and feeling like it was going to fall out of my chest, she started to come out of it. About that time her nurse coordinator walked into the waiting room. Concerned she asked what was going on and I told her. She confirmed that Kelli was basically tripping and while it was funny because we knew what was happening it really wasn't funny at all. Then to add insult to injury, her doctor also came into see what had happened. He confirmed my diagnosis, of course gave me a light tongue lashing for giving her the med, even though it was hers, (and like I didn't feel like total crap already) and said that if she didn't come out of it quickly that he would admit her. The joke around the transplant community is that HLI will hospitalize if you have a hang nail. So, I simply told him, that she was already coming out of it and that I would just sit there as long as it took for the effects of the Marinol to wear off. But I also suggested that they perhaps place the PICC line anyway, because they would have to give her something to relax her to the state she was already in. Luckily, later on, the radiologist came to see us and agreed that she looked okay and that they would go ahead and place the PICC line. That went smooth and easy - relatively speaking. The entire event made me then and still feel like vomiting.

We came home and TPNs were sent via home health. TPN administration was wrought with disaster.

December 19, 2010
Hello Everyone,

We got word back Friday from St. Louis Children’s Hospital. They have chosen to NOT give Kelligar a transplant at this time. They feel that she is too thin and too fragile and probably would not survive the surgery.

However, they feel if she could gain some weight that she would probably be a good candidate and would be reconsidered for transplant. So this is what has been decided. Ursula and Kelli will drive to St. Louis arriving the first week of January.

At that time Kelli will be admitted to the hospital and she will be placed on IV feeds and will also be placed on a bi-pap or cpap machine. This type of machine will help Kelli breathe which means she will be expending less energy to breathe and to clear the CO2 from her lungs. Although they gave us no definite number of pounds to gain, we suspect it will be around 10 lbs and that means she could be in the hospital at least a month or two to gain weight.

Once the weight is gained, and she has been accepted, the fun begins. We will then wait for lungs. There is the chance, of course, that once her weight is up to where it should be that there will not be a need for new lungs. Because she is so malnourished, even breathing takes extra effort! Once the transplant takes place she will be in the hospital a couple weeks following the surgery (assuming there are no complications) and then we will remain in St. Louis for the next 3 months for follow up. Once we have been given the “all clear” we will head home. Honestly it will probably be July or August before we return home.

We would like to thank everyone for all the wonderful gifts and cards that have been arriving daily wishing us well. Even more inspiring are the notes, cards, and e-mails telling how many prayer lists Kelli and our family is on. With that many prayers we know that Kelligar is in good hands! Please continue to pray.

December 6-9, 2010
We had spent the second week of December 2010 at St. Louis Children's Hospital for four days of testing for evaluation for re-transplant. There was some confusion as to why we were there. We had spoken via conference call and we thought it was made very clear that Kelli was there to be re-evaluated for transplant. However, once there, it was evident that some of the staff thought we were there for a check up. When we first received her schedule for testing we were surprised at how light a schedule it was (for evaluation for re-transplant) and seeing that not everyone was on the same page with us once we got there confirmed our suspicions. Additional tests were quickly scheduled. Since some of her tests ran over into Thursday, we were told that there would be no confirmation on whether or not they would do the re-transplant until at least the following Thursday, which is when they have their meeting to discuss their patients. We were told before we left, that the bone density scan revealed severe osteoporosis and Kelli was in danger of breaking bones. In just one year's time she had developed osteoporosis. Think starvation takes a toll on your body?

Since we had figured that we (Kelli and Ursula) would remain in St. Louis from that point forward to "fatten" Kelli up and possibly undergo another transplant we had made preparations to spend Christmas there and have the boys come out. Unfortunately, since the snafu occurred with the scheduling of tests we figured there was no reason to hang around another week just waiting for them to make a decision which may or may not have been made the following Thursday, so we decided to fly home.

The entire trip was a nightmare, and Kelli felt like crap the entire time. She was on a portable oxygen machine which didn't work half the time as we found once we got there that the charger was broken and had not been charging the batteries. We did have a car charger and were lucky enough to charge them for four hours at a time in our rental car in 11 degree weather.

While we were disappointed to be home again we felt we were blessed to be home and be able to share the holidays together. Although Kelli was on oxygen and tired most of the time, we were able to bake together, do some shopping, and just spend time loving each other up. To say she felt great would be a lie. She felt like crap all the time and we knew it.

We got the call from St. Louis the following Friday and we were told that Kelligar was turned down for re-transplant because ironically she was too underweight, and therefore they felt, too fragile, to undergo a surgery of this magnitude. While it was disheartening, Kevin and I would have been equally alarmed had they elected to do the surgery because we felt the same way.


However, they did want us to come back out and they had developed a plan to help Kelligar gain weight with the idea that she would be re-evaluated and more than likely accepted for re-transplant once she gained weight. It was agreed that a PICC line would be placed and she would start receiving IV feeds called TPNs. I had also asked about the possibility of placing Kelli on a bipap or c-pap machine at night, which was hoped to assist her in breathing, allowing her to breathe better and expend less energy doing so and ultimately increase her chances at gaining weight, and it was agreed that this would also take place.

Due to timing of our appointment and the holidays and after conversations with the St. Louis Hospital staff we agreed that if a PICC line was placed here at HLI as soon as possible then we would remain here in Phoenix until the first of the year and then we would head out to St. Louis. However, if we could not get Kelli's doctor here to place a PICC line and get TPNs started then we would have left the day after Christmas for St. Louis. Because her doctor hated TPNs (because there is a potential risk of infection, especially for those with suppressed immune systems) there was a delay in getting the PICC line placed. Finally, after a call between transplant doctors/centers, Kelli finally had the PICC line placed at St. Joes.

November 2010
It is more than just a little irritating and aggravating that we cannot seem to get all her doctors on the same page and in agreeance with the severity of the issue Kelligar is facing. Our fear with pain management is that the doctors will stop looking for the source of her stomach problems. Our fears are not unfounded. Her lung doctor has implied that she over-exaggerates the severity of the pain and he does not feel that it is negatively impacting her (at least not that much). Her GI doctors understand there is pain and seem to want to fix it, but we have not seen a ton of extra effort go into finding out what is wrong and how to fix it. We might be wrong about this, but if this course follows the way it has gone historically, we are not wrong. Simply stated, if they cannot or will not figure out what is wrong in a really timely manner then why can't they refer us to specialists that can? The second opinion at PCH was just an exercise in futility, in our opinion. It does not matter how great the doctor is if they are too busy to treat the patient. And if they are that busy then they cannot give complete care to the individual - which is sad.

October 2010
Monday the 4th seemed like any other day, though Kelli told me she felt worse than usual at school. That night was a rough one. She was vomiting and was not oxygenating well and kept de-sating into the low 80's which required us to pull out and use the oxygen we have never used before. She woke up feeling too sick so we did not even make it to her follow up appointment scheduled for Tuesday, October 5. Instead, she was readmitted to St. Joe's.

At our request, the "j" portion of the tube was pulled from her intestine and at the same time the doctor scoped her stomach area and took samples to biopsy. While she was still under the influence of the local anesthetics she woke up saying she was starved and proceeded to eat 3/4 of a hamburger, some pickles, tomato, candy corn and some pomegranate. While everyone was excited, we have found that was short lived. We asked if there was some kind of pain killer that could be administered prior to eating that could take away some of the pain. She was given viscous lidocaine 20 minutes before her nighttime feeds started and she handled the feeds well and slept throughout the night without being in excruciating pain!

Her lung doctor hated the fact that she had a PICC line in and was convinced that it was infected despite the fact that all cultures came back negative and he had the PICC line pulled prior to us leaving the hospital. So, she is no longer receiving IV feeds.

We came home on Friday, October 8, 2010. Kelli has to have the lidocaine prior to every meal in order to eat, as well as prior to the nighttime feeds she receives. Her breathing is a little better, though she still requires oxygen from time to time. We have started walking, 3 times daily, in order to strengthen her leg and back muscles which hurt from lack of exercise. We also take the oxygen with us - just in case.

August and September 2010
The start of the new school year came with many challenges. Truth told, Kelli has probably only attended maybe two weeks of school during these two months. Her teachers are gracious and have continued to supply us with work to keep her caught up, but we fear she may have to take summer school or repeat the 6th grade if we do not find any resolution to her stomach issues soon. She was in and out of St. Joseph's and Phoenix Children's (PCH) Hospitals for most of these months.

We went to PCH for a second opinion for her stomach ailments. Ultimately, Dr. Ursea had Kelli admitted and gave us her word that she would find out what was wrong with her tummy. Unfortunately, Dr. Ursea never actually saw Kelli when she was at the hospital (almost two weeks). Kelli had a scope done (on both ends) neither of which showed anything too alarming, with the exception that the "j" portion of the button was too short and creating ulcerations in the duodenum area. The "j" button was replaced with one that was about 8 inches longer. Kelli was released but in worse shape than when she went to the hospital. When we went in she was able to take about 110 mls of liquid nutrition per hour through her button but when we left she could only tolerate 40-50 mls per hour and was in acute pain. They also placed a PICC line so she could receive TPN (nutrition via IV). Our initial concerns were validated. Dr. Ursea hospitalized and then treated Kelli with IV feeds as part of her standard protocol. While the TPN feeds may not have been unwarranted it did little to solve Kelli's underlying stomach issues. In my opinion, Ursea is an idiot. She was hospitalized again in September by St. Joe's for breathing-related issues. We had gone in for a stomach CT with contrast but she was in such pain from taking in 500 ML of fluid in 3 hours that she could not even do her standard breathing tests. The stomach issues have been so bad and have changed the way she breathes (protective breathing) that we simply missed it. The visit was warranted. She received a few days of IV steroids and antibiotics. The CT with contrast showed about an 8 inch area in her intestine that was "thickened". They were unable to determine what the thickening was, i.e., thickening, inflammation, telescoping intestine, etc., and she was taken off enteral feeds. Once the IV steroids and antibiotics were finished we went home.

July 30 through August 4, 2010
We flew into Madison, Wisconsin, to attend the 2010 Transplant Olympics. In spite of being sick with the stomach issues that still plague Kelli's day-to-day life, she was able to muddle through the Badminton and Bowling events. She received the 2nd Place medal in Badminton, and while she did not take a medal in bowling, she only came in fourth place, which was huge for her since she really was not feeling well that day. We spent the week in the Wisconsin Dells playing at all the water parks and visiting with brothers, sisters, cousins, aunts and uncles who live in Wisconsin. Kelli's aunt and uncle had a birthday bash at their house for Kelli. We were lucky to have so many people who we love show up and help celebrate. A fun time was had by all. Thanks Aunt Tracy and Uncle Dan!

February 2010
We are experiencing some technical difficulties. Please bear with me. It became apparent that my updates were not being saved AND quite a bit of the website text is jumbled. I have the fun task of checking out everything. So bear with me!

January 2010
January proved to be a very challenging month. Kelli unfortunately had to repeat many of the stomach tests she had done last year. The tests really found nothing wrong. So it was decided to have her stomach button changed from a button that goes directly into her stomach to one that goes straight into her intestines, thus bypassing her stomach altogether. For whatever reason, this has appeared to work. Her stomach is no longer irritated and she has stopped vomiting. She has
regained some of her appetite and although she is not eating giant meals, we are happy that she is just eating!!!

HerStory 2009

December 2009
We had a fabulous Christmas though Kelli is still suffering with stomach issues. In fact, they have gotten worse and it is becoming increasingly difficult for her to keep her night feed down. I don't know what is causing this, but we are heading back to St. Louis because I plan to figure it out!

September 22, 2009
I took Kelli in to visit the doctor on the 14th because she had been lethargic all weekend and had developed a nasty cough. After completing PFTs and having very low scores, they decided to hospitalize her. Cultures showed that she was infected with both Influenza A and H1N1. Luckily, they started her on treatments for both types of flues that day and by the time the cultures came back positive she was pretty much done with the treatments. She came home from the hospital on the 17th. However, the cultures they took on Monday the 21st have not come back yet and we do not know yet if she is virus free. Therefore, she is spending the week at home doing homework. Besides that, her classroom is full of coughing kids, so I would just rather she stay home anyway. She is feeling great, looks good, and has regained her appetite! So things are looking up. Thanks for all the prayers and phone calls! They ALWAYS help!

September 10, 2009
As of today's date, Kelligar has gained 11 pounds! She has gained about 25% of her body weight in a about 3 month's time. Her face is looking rather full, her arms and legs are a "little" bit meatier and she has a little belly roll. Now we're just waiting for a growth spurt!

August 31, 2009 - Kelli's lung diseased identified
Someone asked me today about whether or not Kelligar's lung disease had ever been identified. After looking through the Medical Updates sections I realized nothing was ever said about it. It is named, ABCA3, which is a fatal surfactant deficiency. Surfactant is a mixture of lipids and certain proteins in the lungs that basically keeps them from sticking together when you exhale. It is my understanding and humbly and hopefully correctly described as the ABC family which is a large family of proteins that occur across membranes. The ABCA subfamily aids in the movement of phospholipids and cholesterol within and between the cells. The A3 transporter member directs the synthesis of a specific amino-acid protein. Although they don’t quite know what the function of ABCA3 is, they believe that is involved in the movement of one or more parts of surfactant in or out of the membranes. It is thought that this may eventually be the most common genetic cause of lung disease in newborns.

Similar to other surfactant diseases and diseases like cystic fibrosis, each parent carries one recessive gene. These coupled genes cause the disease in the infant. The deal here is, that if both of us carried the recessive gene then all of our children would have been born with this disease. However, only one out of three kids was born with this lung disease. The kicker here is, Kevin does not carry the gene, only I do. Then the next logical question is why then did Kelli get this lung disease? Well, for some unknown reason there was what is called a "functioning gene mutation" on that particular gene, which in essence created a secondary recessive gene. Therefore Kelli very unluckily received the two recessive genes necessary for her to be born with this disease.

Since the cause has been identified, we have had the opportunity to have some testing done. There was a 50/50 chance that I would pass that recessive gene onto my kids and unfortunately, all received that gene and have potential to pass it on to their children.

August 2, 2009
THE BIG DAY! Kelli's party seemed to be a smash hit. "Into" her dog these days, she had a dog themed party and had a cake shaped like a dog bone with "Happy Birthday Dog Breath" on it. She loved it. I think 45 people showed up and we at, drank, and made merry. Turning double digits was a monumental event for her. And us too!

August 1, 2009
We combined Kelligar's St. Louis check up with a family road trip. The trip was very eventful as we decided to take family road trip and sight see along the way back. It started out eventful - as is typical for vacations! - as we realized when we stopped for dinner in New Mexico that we had left Kelli's meds in Phoenix. We mis-judged the length of time it would take to drive straight through to Tulsa and ended up driving throughout the night. While on the road, I contacted our transplant coordinator who happened to be on call, to tell her that we somehow left the meds at home. I told her about the hospital in Tulsa and thought perhaps we could get Kelli's medication filled there as a lot of places do not carry immuno-suppressents. Although the hospital couldn't fill them, she did find a pharmacy that could. So totally exhausted and grouchy, we made our way to the pharmacy, managing to miss only the nighttime dose. The fun only increased after we told Kelli she'd have to learn to take pills because they could not mix it into liquid form like at home. So sitting in the back of the minivan in humid Tulsa weather in a Wal-Mart parking lot, armed with a water bottle - kicking and screaming - she managed to swallow the pills! Kevin and the boys escaped into the confines of the Wal-Mart store and managed to miss all the fun!

We made into St. Louis later in the day and relaxed for the rest of the night. The next day we spent entirely at the Magic House. For all of you who don't know what it is, well, it's a one-of-a-kind play house that even adults can have fun in. Kelli proceeded onto testing for the next three days. Everything was pretty much uneventful with the exception of her Tac level being almost triple what it should be. Very puzzling. With tests complete, we trudged onto Colorado. We took the crooked and somewhat treacherous (in my opinion) road to the Continental Divide and then spent a delightful day in out of rain showers at Vail, Aspen, and ended the day at the wonderful Hotel Colorado in Glenwood Springs. Somewhere it dawned on me why her Tac level was off. I checked the bottle and realized that the dose had been mixed wrong, so we had basically double dosed three times in a row! Next day we shoved off to Bryce Canyon in Utah. We visited every glorious site until Aidan exclaimed he was bored to death. Again we drove through a good share of the night to the north rim at the Grand Canyon Lodge. It was a very slow trip because the landscape (and road) was dotted with a gazillion deer. Stayed in a great cabin which my city kids realized came equipped without a television! After a fantastic breakfast and some walk abouts, we started our trip home. Made it home earlier than anticipated which gave me just enough time to do some last minute shopping for Kelligar's 10th Birthday Swim Party which was taking place the next day. GREAT planning on my part!

July 14, 2009
The new year brought with it the clear indication that Kelligar was suffering from some stomach issues. When we transferred Kelli's care from St. Louis Children's Hospital to the Heart & Lung Institute here in Phoenix, she was already having difficulty gaining weight. At the end of last year, we finally decided that enough was enough and the kid underwent a battery of tests to determine what exactly was wrong. The following is our understanding of what happened and the reason corrective surgery was absolutely necessary. Kelli was in the hospital for 6 days but is home and doing wonderfully. As of today's date, she has gained 5 pounds!

At the time Kelli had her transplant they also did a surgery called a Nissen Fundoplication and at the same time they put in her "button". The picture below shows how they do a nissen fundo. Basically, they take the top portion of the stomach and wrap it around the bottom of the esophagus just above the esophageal sphincter and stitch it in place. This basically prevents stomach acids from coming up the esophagus. Usually with kids this fundo stretches with the child as they grow and generally doesn't cause any issues. However, Kelli's nissen has slipped and is basically tightened around the top of the stomach, in essence strangling her stomach, which makes it harder for food to get into her stomach.

In addition to this, gastroparesis has occurred caused by the following. It appears that the vagus nerve was damaged, probably at the time of transplant, which affects food digestion, and it appears the pylorus (the lower tube of the stomach going into the small intestine) is constricted. This means that her stomach really doesn't empty from meal to meal so she really is full always. The following describes how the stomach works and what all the terminology means.

Gastroparesis (gastric = stomach; paresis = paralysis) literally means stomach paralysis. It is a condition in which the stomach muscle becomes slow and weakened. Following a meal, it takes too long for the stomach to empty its contents into the small intestine.

How your stomach works. Most people don't know that the stomach lies high in the left upper abdomen protected by the lower rib cage. Empty, the volume of the stomach "pouch" is less than one-half cup. As you eat, the stomach's muscular wall can relax and expand to hold about three pints of sustenance. The stomach's job is to liquify solid food preparing it for digestion and absorption in the small intestine. This is done by mixing the food with powerful digestive juices for several hours. To hold the food within the stomach there are two valves. At the top of the stomach is the lower esophageal sphincter (LES) which prevents backsplash of stomach contents upward into the esophagus. At the bottom of the stomach is the pylorus which controls the "drain" of the stomach.

Once these two valves are closed, muscular contractions called peristaltic waves ripple through the stomach squeezing gently in the upper part (fundus), more powerfully lower down (antrum). These contractions are controlled by a stomach pacemaker, much like the heart, and travel through the fibers of the vagus nerve. When the pacemaker fires, this muscular churning motion mixes the food particles with powerful hydrochloric acid and the enzyme, pepsin. Produced by the stomach, these strong chemicals convert the food to about the consistency of cream of potato soup.

Eventually the pylorus relaxes slightly, opening the stomach's drain. The stomach muscle contracts and the now liquefied food is pumped a little bit at a time through the valve and into the small intestine where the digestive process occurs. When all is working, the fullness we feel after eating a big meal gradually fades as the stomach empties its contents into the small intestine. After a few hours, the stomach is completely empty and ready for the next meal.

What if the stomach pacemaker slows or the pump fails? Then the stomach drains much more slowly and does not empty completely between meals. With the next meal, you would feel bloated and perhaps nauseated. There would be no room for more food and vomiting of undigested food might occur. Each meal would be an ordeal. You might be afraid to eat and begin to lose some weight. This is what patients with gastroparesis have to put up with each day. This is what happened to Kelli.

HerStory 2008

December 2008
We had the pleasure of being invited to spend the Christmas holiday with the fine people of Bunnell Inc. surprise (I think) to Dr. Bert Bunnell, as well as the many fine employees and their significant others that contributed to a trip I know all of us will remember for years to come. During the first three-months of Kelli's life, she was on the Life Pulse High-Frequency Jet ventilator. It is a very complex piece of equipment that provided the least amount of damage to her already damaged lungs. Not only did the ventilator save her but so did Dr. Bunnell. Quite frankly, without his care and compassion, she would not have made it to St. Louis for the transplant. So naturally, it was very exciting to find that Kelli's story became the cover story for the Bunnell newsletter. We wish everyone at Bunnell Inc. a very healthy, peaceful, and prosperous new year!

July 18, 2008
The Transplant Olympics went well. Kelli was to participate in four events, however due to traffic she missed the swimming event. She placed about 4th (we think) in the 50 Meter Dash and the Softball Throw. She placed third in the 1K Cycling event and came home with a Bronze Medal. Team Arizona also won the Team Cup for the most medals won per capita. Our team leader was also recognized at this national event, not too shabby!

July 7, 2008
July is vacation month! We are spending a few days visiting Washington DC and then we are on to Pittsburgh for Kelli's participation in the Transplant Olympics! She is participating in Cycling, 100 Meter Freestyle Swimming, 50 Meter Dash and Softball Throw. Check back in a couple weeks to see new pictures.

May 7, 2008
The kids performed well at their piano recital on the third. This was Aidan's first concert and let's say, he isn't shy! Kelligar did well despite the fact she was sick with the stomach flu (we thought it was nerves). Tristan composed and performed his own composition. It was very complex and quite lovely. Elton affect Kelli's care. There are no other facilities here to handle her care - regardless of what Cigna may say!

April 10, 2008
Today marks the very sad but very real passing of Kelli's friend Annie. We decided to celebrate her life and the year past by having our own little Memorial Service for Annie. Similar to her original Memorial Service we chose pink and purple balloons on which we wrote inspirational messages. We said a prayer for her family, told her we'd see her in Heaven's playground when our time comes, and we released the balloons into the air. It was very cathartic and we think appropriate for such a special little person who graced and blessed our lives.

March 2008
Wow! What a month! How many holidays can you pack into one month?! St. Patrick's Day, Palm Sunday, Good Friday, Easter, First Day of Spring! I hardly had time to change out holiday decorations!  Tristan went on a 3-day school trip to the Astrocamp located in the San Jacinto Mountains of Southern California (lucky duck!), Kelli had a North American Luncheon at school, and my youngest niece got married. We are delighted to welcome Cliff and his daughter, Maile, into our family.

HerStory 2007

December 2007 - We wish you all a Merry Christmas and New Year!

November 29, 2007 - The last visit of the year went well. Standard tests and a CT showed no changes. The visit ended with a standard visit by Brandi's candy dish. We are grateful to have Kelli's primary care doctors and nurses here in Phoenix. The entire staff has done a wonderful job of doing everything right which reassures us that the decision to move from St. Louis Children's Hospital to the Heart and Lung Institute was the right one.

August 9, 2007 - Kelli had her second check up at HLI. She had the standard tests and everything remained unchanged. The doctors saw no problem with giving her a break from the Lupron injection she got monthly. Lupron was given primarily to slow growth. Somewhere along the line she went from being tall to short. We are hoping this will give her body a chance to catch up to where the other kids her age are right now. We made an impromptu visit prior to the check up because someone at swim class had accidentally kicked her in the ribs and she was complaining that it hurt and that it was hard to breathe. X-rays revealed nothing and it was determined it was a bruised rib. Dr. Walia one-upped Dr. Hodges and Brandi by giving Kelli her choice of candy from Brandi's office. Not just a couple pieces but the whole bag!

May 8, 2007 - Today marked Kelli's first official visit to the Heart and Lung Institute (HLI) here in
Phoenix. It was a very good visit and a very comfortable fit. Kelli's Transplant Nurse, Brandi, and her two doctors, Dr. Hodges and Dr. Walia did a great job of making Kelli feel special. And although it is not the children's hospital that dispenses small trinkets and stickers after every test, they did VERY good by remembering to have a sticker or two for her. Brandi cinched the deal by giving her chocolate! She had x-rays, pulmonary function tests (PFTs), CT, and clinic visit. Everything was status quo which was a great a way to start her visits.

April 10, 2007 - Today marks one of the saddest days in our lives. Kelligar's transplant buddy, Annie, passed away today. Her poor little body could no longer handle the insults brought upon it from the various viruses and infections. And although her parents are grateful that she is no longer suffering, they are dealing with so much pain and sorrow. They have established The Annie Hollinshead Foundation in her honor and have a beautiful website that commemorates her life and the overwhelming affect she had on people - and actually still has with the good works done on her behalf. We would ask that you kindly remember, Jim, Elly, and Annie in your prayers and visit the website at: www.annieh.com Our goal is to have a memorial photo page for Annie, sometime after the first of the year. So please come back and check out the miracle off life named Annie!

March 1, 2007
Today we spoke with many of the staff at the Heart and Lung Institute (HLI) here in Phoenix and have officially decided to move Kelligar’s care from St. Louis Children’s Hospital (SLCH) to HLI.

There were so many factors that played a part in our decision to transfer her care to Phoenix, although the reasons for not leaving SLCH were equally high. The phone call to SLCH to tell them of our decision was probably the most difficult call I have ever made. We are loyal to a fault and felt like we were betraying the very people and place that saved Kelli’s life. However, it is good to know that HLI will have a collaborative relationship with SLCH when it comes to Kelli’s care should the need arrive. Additionally, UNOS tracks transplant recipients through the original transplant center, so she will always have a connection to STLCH.

We are excited about the new doctors and coordinators and other fantastic people we are getting to know here in Phoenix. Change this big is REALLY SCARY but also offers new opportunities and
insights so we choose to embrace it with open arms and allow all the fabulous infinite possibilities to bless us.

February 19 – February 20, 2007 (Six month evaluation)
Kelli had her six-month evaluation in St. Louis. Everything went well. X-rays were unchanged but
her VQ scan was slightly improved. She was still sporting her wintertime sinus congestion and runny nose. CT confirmed but the cultures came back negative for any infections and contained normal flora. Her doctor gave us the choice to either do a bronchoscopy or six weeks of antibiotics and a return trip in six weeks to redo testing. Of course we opted for the antibiotics and return visit.
Very unfortunately, while we were in St. Louis, Kelli’s long-time transplant buddy, Annie, was admitted to the hospital with an unknown lung ailment. Long story short, the day we left, Annie was placed on a ventilator. She was trached on March 9, 2007. It appears that she contracted a bacterial infection concurrently with the weaning from the ventilator. Instead of weaning, her ventilator requirements increased. Assessment of the damage done by the virus / pneumonia / ventilator and now the bacterial infection is grim. She is in the process of being listed for a second transplant. I can only imagine the fear and angst her and her family must be facing at this time. I know they are weary.

HerStory 2006

July 13, 2006 - Kelli had her six month check up in St. Louis. Her first day of testing was good. Her x-rays, CT scans, and VQ scans were virtually unchanged. Her PFTs were slightly improved. Since her testing went well and she looked good (no infections or anything going on) she was able to skip the bronchoscopy on Day 2. She was tickled pink about that! She spent the previous week meeting with family and friends.

HerStory 2004

Wednesday, October 20, 2004 0:53 AM CDT
Miss Lucky in Lungs got her flu shot, but the rest of us have not been so lucky. Kelli visited the pulmonologist today. She has been sporting a sinus infection since August. The last round of antibiotics has effectively loosened all the crud. There were no signs of infection in her blood work (whew!), so a viral culture was taken -- boy that was fun! They also want a sinus CT to see if the sinuses are packed tight like last time or if they really are draining. It is unsettling to have an infection go on this long. Hopefully the cooler weather will have a positive affect. Please keep her in your prayers.

Friday, August 13, 2004 0:13 AM CDT
Hello Everyone:
Just got back from St. Louis for another round of Kelligar's testing. All in all, it was a good visit. She had a VERY long day on Monday and was not the least bit interested in getting up on Tuesday to go to the hospital to have a bronchoscopy. We were alarmed when we went to check in at the Procedure Center and were told that the doctors had cancelled the bronch. We, of course, thought it meant that the previous day's tests must have been so bad that.....well, we didn't know what to expect. Instead, we were told that since she is about 5 years out now, that they will not be doing a bronch every visit because a bronch checks for infection and acute rejection. Unless she is symptomatic they will not bronch her every time we visit. Since she has been diagnosed with "BO" the only way to check to see what the status is is by doing an open-lung biopsy (which they won't do again) or by following the results of the first day's testing very closely. This means they will be studying the X-rays, profusion scans, CTs, Pulmonary Function Tests (PFTs) and always comparing them to previous results to make sure they are unchanged.

Kelli was very happy not to "have to be put to sleep" for the test but was not pleased with the trade
off, which was an additional blood draw. She got over that quickly.

We were able to include some fun in this visit. We were lucky enough to have our old neighbors (Dick & Jo - who use to live across the street - here in AZ) who now live in Illinois come to visit. We enjoyed much time together and they spoiled Kelli rotten! We also got to see Kelli and her transplant buddy - Annie celebrate their 5th birthdays together. It was a Princess Party to remember! We even made it to the Magic House.

As always, we are super glad to be home and we appreciate the prayers and support always sent our way. We certainly have the best of friends.

Wednesday, August 4, 2004 0:26 AM CDT
Well Kelligar did it. She won the gold for the softball throw (12'11") and a silver in the 50 yard dash!! She was absolutely hillarious. She smiled and looked at the crowd so much that I am surprised that she was able to complete either competition, let alone win. It was a great experience, albeit a little long for mom and dad and the three kids in one hotel room. Where's that nanny when you need him? It was hard to believe there are so many children that receive transplants -- but they all looked fabulous. What a great event!!

Kelli turned 5 on Monday. Hard to believe she is that big already. Party this Saturday and we turn around and leave for St. Louis on Sunday. Kelli's regular testing is scheduled for that Monday and Tuesday. Please say prayers that EVERYTHING looks good! Kelli is also celebrating her birthday with her very special friend, Annie, who lives in St. Louis, who is also turning 5 on the Aug. 4th and received a double-lung transplant a couple weeks after Kelli. We are very excited to see these two girls grow up, as special friends, and to share special times together. It does the heart good. Our love to everyone. U

Friday, July 2, 2004 10:54 PM CDT
Just checking in to let everyone know Kelli is doing great. We are pretty much home-bound since she is so immunosuppressed once again. She doesn't seem to notice much. We try to go swimming at least once a day and the kids have been doing homework for half an hour to an hour most days. Mondays, Wednesdays and Fridays they work on their scrapbooks (their idea) and the other days we play games - Aggravation mostly (the board game not my sense of being!) She had a check up yesterday and they thought she looked great. We head back to St. Louis the first week of August (after her birthday on the 2nd) for her regular testing. The Transplant Games are the last week of July. It's scary how quickly time goes by. Then it will be the MOST WONDERFUL TIME OF THE YEAR .... Back to school!

As for the rest of the family, all are well. The baby is cutting a tooth (we think) and making us pay for it! My great neice, who is 11 months, was hospitalized yesterday for an abscess on her leg. They surgically opened it, etc. etc. today and will keep her for a couple more days just to watch her. Scared us all plenty.

Suffered (kidding) through my 10 (times 2) class reunion last weekend. Ouch! I can't really be that old -- I have little kids, most of them had kids getting ready to graduate high school!!! It was fun and we had a good time.

Very exciting news. The DMV is now carrying Donate Life License Plates. You can order them on-line or at any of their locations. Bet you can't guess who has already ordered them!

Will keep you updated on any new events. Ursula

Friday, May 28, 2004 4:06 PM CDT
Hi Everyone: A ton of thanks for all the notes of encouragement. Kelli loves for us to read them to her. Today was a fabulous day. It was her and her brother's last day of school and it was a half day filled with all kinds of fun. Kevin and I felt it was such an important day and would have been so disappointing not to go. So, we donned a mask and off we went. It was an outdoor water event, and she thoroughly enjoyed seeing and playing with her friends and enjoyed not wearing the mask -- kind of difficult to do when you're getting soaked! Both kids are a little sad that school is out. They both love it so much. Let's see if that's true in another eight years!

The following is a link to a very nice article written about our trip to another Kindergarten class (mentioned in a previous journal entry). We've heard the Donor Network of Arizona is getting a great response to the article. Remember, if anyone has a company health fair or event that you would like to have a speaker come to from the Donor Network of Arizona, you can contact them via the link in Kelli's page or you can contact me directly. As you can imagine, Kelli enjoys these events. We're happy you are all viewing the website. Kelli is feeling great and looks good too.

Subject: Girl, 4, puts face on organ donation  To access the content, copy and paste the full address into your Web browser:
http://www.azcentral.com/php-bin/clicktrack/email.php/1483981

Wednesday, May 19, 2004 4:21 PM CDT
Forgot to mention that the Arizona Republic was there too. Didn't know it was going to be such a big event, but we are always happy to have coverage when it comes to such a wonderful thing like organ donation.

Wednesday, May 19, 2004 4:09 PM CDT
Yesterday Kelli went with me to speak to a Kindergarten class in Glendale. It was her first time out in public since we've been home and, yes, I made her wear a mask. The kids were so cute. They asked me if she could talk. Guess they thought a mask made her unable to do so. After a few minutes, she got along famously with all of them. 

Even got invited to a birthday party! She got to take her mask off to eat brownies and drink milk that a class mom brought in for the event. News Channel 5 was there. For a second time in history, Kelli was at a loss for words -- even shy! The first time happened at St. Joseph's Hospital, last week, when Mickey Mouse and Goofey came into her room. It is odd to see an extrovert like Kelli suddendly become too shy to talk! All is well here. We are truly grateful to be home and thankful for all the friends and family that continue to call to check up on us.

Sunday, May 16, 2004 9:31 PM CDT
Just a quick update. Kelli got released from St. Joseph's Hospital last night about 6:00 pm. We all had a great night's sleep!!! Kelli is doing well, but Aidan and Ursula started up with a coughing/sneezing/not feeling well thing this morning. Great timing!! Hopefully it's just allergies. It's kind of difficult to keep a mask on a baby -- they try to eat them!

Tomorrow early a.m. Kelli gets blood drawn to check her Tacrolimus levels. Probably will be a weekly event until the troughs level out. Other than that, we will work on staying healthy. We return to St. Louis in August. But, only after attending the Transplant Olympics. She will be participating in the Softball Throw and the 50 Meter Dash. That should be funny to watch.

Thursday, May 13, 2004 6:44 PM CDT
Kelli and the rest of the clan got to return to Phoenix last night. We were all very excited to be back in Arizona. Kelli was very good about keeping her mask on at the airport.

Kelli got to see her big brother Tristan. They were both very glad to see each other.

Kelli was checked into St. Joseph's Hospital in Phoenix to complete the final three days of treatment. She will be released on Saturday.

Her room number is: 2 West 40; Phone: (602) 406-7240

Mom, Dad, Aidan, and Grandma Mary are also glad to be back in Phoenix and all of us can't wait for her to come home on Saturday.

Thanks for all of the messages.

Tuesday, May 11, 2004 11:24 AM CDT
We got the official "okay" to go home to Phoenix today. Looks like we will be leaving St. Louis tomorrow night. Although we will be home, Kelli will be checked into St. Joe's Hosibol (Hospital) for the remainder of her treatment (about 5 days). Still, it'll feel good to be home.

The last three days we have been able to get out of the hospital on day passes. Kelli's treatments have been getting over about 1:00 pm and we were able to stay at our hotel until about 9:30 pm. She even got to dangle her feet in the swimming pool -- water isn't quite as warm as it is in Phoenix!

For Mother's Day, Kevin, Kelli and Aidan, took me and my mom, Mary, to a great little restaurant. We sat outside and watched the trains go by while eating some great Italian food. Later, Kelli played with Annie, her best pal, who received a transplant shortly after Kelli. It does the heart good to see the two of them playing.

Today, Kelli got a phone call from her teacher, Billie. That made her day. She has been quite sure that everyone in Phoenix is missing her! She also got a visit from three clown doctors -- they blew bubbles and she sang to them. Precious. Becky from Child Life Services brought her a huge box of Barbies to play with. You can hardly see her in the bed next to all that junk!!

Yesterday she got to meet Nellie, one of the Pet Dogs. Nellie was dressed up like Pippie Longstonging. Hillarious. That dog knows no shame. She had orange glasses and orange brades that stuck out on the side of her head.

Kelli's friend, Erik, who received a second set of lungs got to leave the hospital yesterday. We were sooooo excited for him and his family. They had been here for a while and were READY to jet. I was told that some other little person was in surgery (started in wee hours of the morning) receiving a new set of lungs. We wish both families good luck and much peace and joy.

Thanks to everyone for all the words of encouragement. Kelli loves to hear from everyone (and, of course, being the center of everyone's attention!!!).

See you soon.

Friday, May 7, 2004 3:33 PM CDT
This has been a trying week for us. We arrived in St. Louis on Monday, May 2,2004, for what we honestly thought would be treatment for an on-going sinus infection. We thought we would be returning home on Tuesday. Monday consisted of a day's worth of her regular testing, i.e., CTs, X-rays, VQ Scan and PFT testing. The results, however, showed that there were areas with air trapping. Kelli was admitted and an open-lung biopsy was performed on Tuesday morning. She has recovered well from that but has had considerable pain.

The biopsy showed conclusively that Kelli had the beginning stages of "BO" Bronchialitis Obliterans. The sample that was taken showed areas that were completely blocked, some that were inflamed and some that were completely clear. Course of action for this is to give her 10 days of IV Atgam (T-cell binder) and Gancyclovir, a 3-day course of IV steriods and at about day 4 changing her baseline immunosuppression from Cyclosporine and Imuran to FK506 and MMF. While they cannot cure or reverse BO, they can usually manage it and and they do that by changing her medications. Luckily, we think, the docs caught it before it affected Kelli physically. She looks the same as she always has. The picture of health. And for anyone that knows Kelli and how hairy she is from her meds, they will soon see a change. Her new meds will cause the excess hair caused by the Cyclosporine to gradually fall out!

This means, of course, that our plan of action changed. Ursula's mom, Mary Logue, gratefully hopped on the plane and was out here the morning after I called her. She is situated at our long-term hotel with Aidan.

The current plan is that we will be here a total of 10 days from the Atgam start date (yesterday). There is a chance that Kelli will be allowed day passes and we can take her to the hotel for most of the day and just return here for the evening and for the 6-hour treatment first thing in the morning. There is also a possiblity that we will be able to do 5 days of the treatment here with 5 days in Phoenix -- we'll see how well that one goes!

Kelli is doing well and is tolerating the medicine well too. She is feeling sorry for herself (a lot) and hates being couped up here. Her changes in immunosuppression will take her back to the way she was when she first got her transplant. So, for the next three months we have to be cautious of people, places and things. She is most disappointed because she will not be able to finish out the school year (only a few weeks to go anyway). She will, however, be going to Kindergarten in the fall. Oh, and her sinus infection appears to be clearing up! Thumbs up for accupuncture!

We have good friends and hospital staff here who are taking good care of Kelligar and us. See everyone soon.

HerStory 2001

November 2001 - We spent the week November 4, 2001 in St. Louis for Kelli’s two-year post op check up. Yes, two years! Can you believe it! Her evaluation went beautifully. She came through all of her testing like a champ. This set of testing included physical therapy and developmental evaluations on the first day. The second day was the long day, with a CT scan, X-ray, VQ scan, ultrasound and PFTs, all under a general anesthetic. The third day was the bronchoscopy.

Everyone was very pleased to see Kelli and she performed, as expected. Kelligar is now 27 months and in the physical and developmental evaluations rated in the 30- to 36-month area. This is the first time she has been ahead of the curve! There was zero rejection and we thought she was getting away free of any infections. However, almost a week later (curious) they called to tell us that her culture was growing both alpha strep and strep pneumonia. It is very odd that it would take a week for cultures to grow to a count of over a 100,000 (a count that high has historically shown an infection brewing in just 24 hours) – which requires treatment with antibiotics. Her doctor felt they had mistakenly sent the results for someone else (since Kelli had no physical presentation of any infections and because the counts were so high), but was unable to verify this fact since the slides had already been destroyed. So, better safe than sorry, she was put on some antibiotics for ten days. No big deal. All of her blood work indicated that her immunization levels, etc. were right where they should be.

We were very complimented when we heard that one doctor asked Kelli’s doctor if they had done anything to this child; that she looked and acted like a perfectly normal two-year old (one without a transplant!). That’s the best thing anyone could have said to us.

Overall, they felt she looked so good that they would have scooted us to annual visits, had it not been for the lump on her right breast (discussed below). So we will return in June of next year.

It was a very busy and exciting summer for us. Kelli had her g-tube (button) removed in August, and although it is a very slow process, it appears that it is healing on its own (meaning she won’t require surgery to close it for her). We went to Sacramento, on our first family vacation, to visits our good friends. Following that trip, Kelli experienced an ear infection in both ears – normal kid stuff. Tristan started soccer. As mentioned previously, Kelli developed a lump (about the size of a dime) on the right breast about six months after we originally came home from St. Louis. It was small and hard but pliable so it was thought to be a side effect of her immunosuppression. Then seven months ago, the lump went away completely and then reappeared, but this time larger (size of a half-dollar) and different in texture.

In March she had some blood work done, x-ray of her left hand (to measure bone growth) and an ultrasound of her uterus and ovaries. Although they found her hormone level to be a little higher than normal, all the other tests indicated there was no surge in hormones or pre-adolescent development. The lump changed yet again and another set of labs was taken, but again nothing resulted.

The endocrinology department in St. Louis examined the lump (physically and ultrasound) and felt that she has developed a breast. By all accounts we were told that it is not uncommon and happens in quite a few kids – like 60% of the population. They opted to put her in that category instead of saying the breast was caused by her medication. As such, in most cases, the swelling will probably go up and down a few times before disappearing, and because she is so thin it is more noticeable than it is with chubbier kids. But as always, on the side of precaution, more blood was taken and another x-ray of her hand was taken. If there should be any changes in bone growth, indicating hormonal activity, then some additional tests would be run to see if she was entering puberty early and ultimately she would be prescribed some medicine to stop that process. I think it’s nothing but it’s so hard to tell with the “ifs” you get from everyone. So we eagerly await the results of all the tests. I do know, there is no pain associated with it and we don’t need to worry about breast cancer and there is absolutely no reason to biopsy or remove it. This is a pretty common thing and will probably take care of itself. There is one problem though. Kelli wants a bra and I have NO idea where to get (or how to make) one for her. Do they make bras small enough to fit Miss Betty Spaghetti?

This started out as “just a short update” and ended up being a life history-sorry. We hope you had a wonderful Thanksgiving and wishes for a wonderful Christmas Season.

Love,
The Neal Family
Kevin, Ursula, Tristan & Kelligar

April 20, 2001 - Since her double-lung transplant, 17 months, 2 weeks and 2 days ago, Kelli has had a pretty remarkable, yet unremarkable recovery. The year that followed the transplant was wrought with unrelenting scrutiny on the kid’s progress. Physical, occupational and speech therapies (as well as her many doctors) have been diligent in ensuring that she keeps up with her peers. We feel, however, that once she got past the few initial hurdles, her own innate abilities took over. This child is unstoppable and is pretty typically just another kid. Strangers don’t know that she had such a difficult start and the people who did know she had challenges in the beginning cannot believe this is the same child! I guess they expected her to be a
listless little baby. But listless she is not!

At 20 months old and a whopping 21 lbs. she is a handful and gives her brother a run for his money! She sometimes tackles him and we have to intervene. She has also figured out that 9 times out of 10 if she whines or cries in the vicinity of her brother he’s going to get yelled at. She seems to get great joy out of this exercise. Funny, I can remember my younger brother doing the same exact thing to me! Once she decided to walk she decided sometime shortly thereafter, that running is better. Man can she get from Point A to Point B in no time! Her vocabulary consists of various articulations, but her favorites are mama (yeah!) for everything, AEIOU, and a smack to your arm or leg to follow her to her destination. It was cute the first 5,000 times, but I must admit it is getting old. But quite effective as far as she is concerned.

She loves her baby dolls but she also loves toy cars and is better at car sounds than her brother ever was. She thrives in the outdoors and is about like my mom’s old dog, Pete, who used to make a run for the great outdoors every time the door opened! Everyone in my family is infatuated with her skinny little legs and my brother likes her big feet, in particular, in the typical white baby shoes. Honestly, she has a gorgeous head of hair and eyelashes to die for. Kevin has mentioned looking into convents already!

Her medical history, so far, has been pretty uneventful. She has not had any visits to the emergency room and she faired very well through the winter. She did not catch any of the major flu bugs, colds or RSV circulating around. She did have a number of small upper respiratory infections, most probably related to sinuses and allergies. We have continued to travel quarterly to St. Louis for her follow up visits, with a small lung infection found each time. All were easily treated with antibiotics, and common occurrences, we are told, in the baby transplant recipient population. She should grow out of these! The tests her doctor runs to check her immunization levels found her to be in the normal range and did not require any re-immunizations. Of course, she gets the flu shot and the preventative RSV shot during the wintertime.

This last visit to St. Louis we were given the official okay to start going out as a family once again. We are now completely aware of the “hidden” dangers that lurk around an outing out of the house and are still somewhat reluctant to go, although we are becoming less nervous about doing so. It’s really hard not being a nervous Nelly!

All of her doctors appear to be very pleased at her progress, and she still manages to capture everyone’s hearts with a coy smile here and a knowing and teasing look of her eyes there. She is surely still the Princess! She has just developed a fear of doctors and doctor’s offices. The last visit to St. Louis brought about the mental correlation of where she’s at and what is about to happen. Even here at home, her monthly check ups have become less than fun. She screams and cries just getting her ears checked! And about her monthly blood draws, well, let’s not go there! But, she is very forgiving and manages to smile and wave bye-bye and blow kisses to the very people she didn’t want to see in the first place.

This past almost two years has been quite a humbling, busy and educational period for us. We thank God and all our friends and family who really stuck with us through this whole ordeal. We really think that the continued support and prayers made us lucky enough to bring Kelli home and has allowed both of our kids to remain pretty well adjusted considering all they’ve been through. Our son, Tristan – we wonder how this has really affected him. Guess only time will tell. It’s hard enough to know whether or not you’re doing the right things by your kids and with something like this, well, we really don’t know whether we did it right or wrong, but we did only what we could! Let’s just hope there was some Divine Intervention guiding us in the right direction!

February 2001
Today, February 21, 2001, marks Kelligar's one-year and three-month post-transplant follow up visit. As I am typing this, Kelli is rolling around on the floor making noise and watching TV after Round #1 of testing. Today's tests measure and allow us to see lung capacity, volumes and pressures and consisted of a CT Scan, X-ray, VQ Scan and Infant PFTs. Kelli generally comes out of general anesthesia rather fussy and out of control. This time, however, we gave her a couple ounces of PediaSure before she came to and it appeared to make all the difference in the world. She woke up smiling although a little drunk in her actions. She has been great all night although the IV (which we try to keep in through tomorrow's tests) in her arm is driving her absolutely crazy! Tomorrow begins with a photo op on the helipad with the transport team that brought Kelli from the airport to St. Louis Childrens hospital. Tests consist of a major blood draw at 7:30 am and check in for the Transbronchial biopsy is at 8:30 am. This test should be completed no later than noon. It consists of a scope with a camera attached to it This equipment goes down through a nostril and down into the lungs. The doctors look at the vocal cords, the scar site where the new lungs were attached and down into the lungs. X-rays are taken and then the camera is replaced with a pair of forceps. Five to seven snips are taken from the interior of her lungs and are biopsied for infection or rejection.

February 13th marked our one-year at home and Kelli has officially been home in Phoenix longer than she was in the hospital and in St. Louis! Since we've been home, Kelligar has progressed better than many expected. She has had two physical therapy evaluations in the past two weeks and rated age appropriate in both instances. On a totally personal evaluation level (and as a biased mom) she is totally smart and full of energy. We've nick named her bucket 'o worms. She doesn't walk but runs everywhere and there isn't one thing in our house that hasn't been rearranged or redecorated by her. The best compliment we receive these days is, "I would never have guessed she was born sickly. She looks so normal." And, it is amazing how many people are surprised when they finally do meet her. Most say they expected a listless little baby. Oh how far from that she is; and we thank God daily for that one! We have discussed with her doctors our wish to change the immunsuppressent Cyclosporine to one called FK506, in the spring. Our desire to do this is prompted by a lump that has formed on her right breast and a thickening of her gums, both caused by Cyclosporine. There is a good chance that switching to FK506 will eliminate both problems and decrease/eliminate the hair growth caused by the Cyclosporine. We apologize for such a delay in updating her website. We are guilty of thoroughly enjoying our daughter and son and all the many pleasures and hardships that we have encountered over the past year. We've been lucky though. Kelli experienced zero rejection over the past year, but with each bronchoscopy they found an infection brewing, which was easily treated with antibiotics. Other than that, we've dealt with the occasional runny nose and fussiness associated with cutting teeth. We thank everyone for their continued prayers and words of support. We know that it has been integral in her progress. THANK YOU!

HerStory 2000

This is National Donor Awareness Week and I thought it would be the perfect time to give everyone the long overdue update on Kelli’s progress.

Since her double-lung transplant, 17 months, 2 weeks and 2 days ago, Kelli has had a pretty remarkable, yet unremarkable recovery. The year that followed the transplant was wrought with unrelenting scrutiny on the kid’s progress. Physical, occupational and speech therapies (as well as her many doctors) have been diligent in ensuring that she keeps up with her peers. We feel, however, that once she got past the few initial hurdles, her own innate abilities took over. This child is unstoppable and is pretty typically just another kid. Strangers don’t know that she had such a difficult start and the people who did know she had challenges in the beginning cannot believe this is the same child! I guess they expected her to be a listless little baby. But listless she is not!

At 20 months old and a whopping 21 lbs. she is a handful and gives her brother a run for his money! She sometimes tackles him and we have to intervene. She has also figured out that 9 times out of 10 if she whines or cries in the vicinity of her brother he’s going to get yelled at. She seems to get great joy out of this exercise. Funny, I can remember my younger brother doing the same exact thing to me! Once she decided to walk she decided sometime shortly thereafter, that running is better. Man can she get from Point A to Point B in no time! Her vocabulary consists of various articulations, but her favorites are mama (yeah!) for everything, AEIOU, and a smack to your arm or leg to follow her to her destination. It was cute the first 5,000 times, but I must admit it is getting old. But quite effective as far as she is concerned.

She loves her baby dolls but she also loves toy cars and is better at car sounds than her brother ever was. She thrives in the outdoors and is about like my mom’s old dog, Pete, who used to make a run for the great outdoors every time the door opened! Everyone in my family is infatuated with her skinny little legs and my brother likes her big feet, in particular, in the typical white baby shoes. Honestly, she has a gorgeous head of hair and eyelashes to die for. Kevin has mentioned looking into convents already!

Her medical history, so far, has been pretty uneventful. She has not had any visits to the emergency room and she faired very well through the winter. She did not catch any of the major flu bugs, colds or RSV circulating around. She did have a number of small upper respiratory infections, most probably resultant to sinuses and allergies. We have continued to travel quarterly to St. Louis for her follow up visits, with a small lung infection found each time. All were easily treated with antibiotics, and common occurrences, we are told, in the baby transplant recipient population. She should grow out of these! The tests her doctor runs to check her immunization levels found her to be in the normal range and did not require any re-immunizations. Of course, she gets the flu shot and the preventative RSV shot during the wintertime.

This last visit to St. Louis we were given the official okay to start going out as a family once again. We are now completely aware of the “hidden” dangers that lurk around an outing out of the house and are still somewhat reluctant to go, although we are becoming less nervous about doing so. It’s really hard not being a nervous Nelly!

All of her doctors appear to be very pleased at her progress, and she still manages to capture everyone’s hearts with a coy smile here and a knowing and teasing look of her eyes there. She is surely still the Princess! She has just developed a fear of doctors and doctor’s offices. The last visit to St. Louis brought about the mental correlation of where she’s at and what is about to happen. Even here at home, her monthly check ups have become less than fun. She screams and cries just getting her ears checked! And about her monthly blood draws, well, let’s not go there! But, she is very forgiving and manages to smile and wave bye-bye and blow kisses to the very people she didn’t want to see in the first place.

Kelligar will be admitted to St. Louis Children’s Hospital the first part of June. Besides her regularly scheduled tests, bronch and evaluations, we (us and her doctors) have decided to change her immunosuppressive medications to another trio. We decided the change was appropriate because of three side effects caused by her current therapy, which are: a lump that developed under her right breast (which has been examined and identified as a normal breast tissue lump similar to what some adolescent boys and girls get); gingivitis hypoplasia (thickening of the gums); and excessive hair growth (all over her body). None of these appear to be side effects of the medications we are switching her to, so through time all of these things should hopefully disappear or decrease or become less visible the older and bigger she gets. She will be admitted to the hospital so they can observe her to make sure she does not have any ill effects from the new medications.

This past almost two years has been quite a humbling, busy and educational period for us. We thank God and all our friends and family who really stuck with us through this whole ordeal. We really think that the continued support and prayers made us lucky enough to bring Kelli home and has allowed both of our kids to remain pretty well adjusted considering all they’ve been through. My son – I wonder how this has really affected him. Guess only time will tell. It’s hard enough to know whether or not you’re doing the right things by your kids and with something like this, well, we really don’t know whether we did it right or wrong, but we did only what we could! Let’s just hope there was some Divine Intervention guiding us in the right direction!

As mentioned in the opening sentence, this is National Donor Awareness week and I would like to take this opportunity to appeal to all of you on a subject that is obviously close to our hearts. We have always been aware of and have indicated our interest in being organ donors. It was never NOT a consideration to donate Kelli’s organs had she not made it to or through the transplant. Fortunately, she did make it and fortunately there was another family who had thought about it and decided to donate their infant’s organs, which made saving Kelli’s life a possibility. While that is a bone-chilling and sad thought, it is reality. People die, and so do babies and adolescents. Donating their organs is such a gift of life and one that is truly truly appreciated by the recipients and their families.

There are currently about 75,000 people on the organ transplant waiting list and an average of 15 Americans die daily waiting for that life-saving organ. It is estimated that only about one-third of the people on the waiting list will actually receive the transplants they need to survive this year because fewer than 1% of the people who do die do so in a way that their brain expires but their heart keeps pumping blood to their organs – which is essential if the organs are to be saved and reused. Think about how drastic the situation really is. How many of that sole 1% actually donates their organs? Not very many, just look as the waiting.

I would ask that if any of you are interested in organ donation, make it clear to your family. Generally speaking, families can and more times than not, do override the dying person’s wishes. Sad but true. It is also a good idea to carry a donor card (I’ve attached a link to the Donor Card download) and to indicate your wishes on your driver’s license and in your Living Will.

I know this is a touchy subject, wrought with all kinds of taboos and concerns, but talk about it, think about it and talk about it some more. Anyone of any age can donate and there are so many people dying annually that could have been saved by an organ that was taken to the grave. Please discuss it with your family and friends and make your own wishes known. Thank you.

Oh, and if you can swing it, donating blood would be good too. All the blood banks are perilously low!

Our love and prayers to everyone and I promise to try not to wait another year to send an update your way.

Ursula & Kevin Neal & Family