Daughter's Intestine Transplant
Donation protected
Raising money for medical expenses, and traveling expenses for our daughter Lilly. Lilly received a small intestine transplant on July 15th, 2017. Just 5 days before her 5th birthday (7/20) and is still having several complications, including rejection. She has unfortunately been in the hospital now for over 9 months, and we still don't know when she is able to come home....
Lilly was born with a condition called Gastroschesis (short gut syndrome), where most of her intestines were born on the outside. Unfortunately her condition was so sever, that the hole where the intestines came out of closed and killed off everything that was on the outside. So just not even a day old, she had to have surgery to remove all the dead intestines, and reconnect what left was good. After the surgeons reconnected everything, Lilly ended up having too short of gut to even tolerate feeds. (She could not tolerate formula or even breast milk) So she had to have a PIC line placed in her arm, and received TPN (IV nutrition) to give her the proper nutrients she needed to survive. Not even two weeks old, Lilly had to have another surgery called a S.T.E.P. procedure (lengthening the intestines) to see if she would finally be able to absorb nutrition in her intestines and handle feeds. Unfortunately, it failed. She was still not able to tolerate feeds. Her condition was so complex, ( odds are1 out of 100 gastro kids) that she had to be transferred to another hospital where they specialize more of her condition. So in August, 2012 (just a few weeks old) got transferred from St. John's hospital in Springfield, IL to Luries Children's hospital in Chicago, IL
After Lilly was transferred, she continued to be in the NICU for over 3 months before graduating out of the NICU, and onto the GI (gastro intestinal) floor before she was able to come home. The surgeons placed a g/j tube (for feeds and gastric drainage) in hopes for her actually to be able to handle feeds and to give medicine in since she was not able to tolerate any meds by mouth, which also ment she was not able to eat or tolerate regular food as well..
Finally after almost 5 months being in the hospital, the drs finally let Lilly go home for the first time.
Almost 6 months later, she had to have another surgery on her intestines. She ended up having an obstruction (blockage) where not only was it causing her to get sick, but also gave her a very bad blood infection where it almost took her life..
After the surgeons went in to fix the blockage, they also wanted to do another lengthening procedure in a final attempt in hoping her intestines would work. Unfortunately it did not... her intestines still had poor absorption and did not work or move properly. So the surgeons and Dr's came together and talked to me and my husband and thought it would be a good idea to place Lilly on the transplant list for a small intestine in hopes of giving her a better life. Lilly was only a little over a year old when she was placed on the transplant list.
We all waited anxiously for almost 4 Years to receive the call for her transplant. After battling threw many blood infections, broken bones (she has Very Brittle bones due to the TPN) and many central line replacements, we Finally received the call on July 14th, 2012 that they had found a donor that was a match. My husband and I couldn't believe it, after all these years of waiting, we finally got the call we have been praying for we were both in tears. It took us about 5 hours to get up to Chicago (we live over 300 miles away) to get her to the hospital to get ready for her major surgery.
Lilly went into surgery about 6 am on July 15th, 2017 and was in the O.R. for over 12 hours when she was finally able to be transferred to the PICU to recover. It was so hard seeing her in so much pain, and on a ventilator... those memories will always be engraved in our minds...
Thankfully she pulled threw, after recovering for almost 2 weeks, she was finally able to be transferred out of the PICU back onto the GI floor where we were hoping she could recover enough so we could bring her home. At the time with how well Lilly was doing, the drs were hoping to have her home between 4-6 weeks if she continued to do well.
Unfortunately in September, Lilly's new intestines were obstructed and we're not getting enough blood flow. So she had to go under another major surgery to help fix it. She was in surgery for over 6 hours that day before transferred back into the PICU to recover. This time, the surgery took more of a toll on her than we all thought was going to happen. When the nurses gave her the proper hydration threw iv, her body was leaking out the fluids on the inside causing to press against her internal organs almost causing her kidneys to fail and she was having a hard time breathing. At the time I had also lost my job, being up in the hospital for so long with her. My husband and I were a huge mess. We were hoping things were going to get better, we didn't want to lose our daughter. So the Dr's had lilly go from a ventilator to an oscillator that was easier on her lungs, and that she had to be placed into a medically induced coma to help her heal safely, she also had to go threw dialysis as well due to her kidneys not working so good. She was like that for almost a month before they were able to safely wean her back to the ventilator and was able to get her out of her induced coma. Eventually day after day, she was starting to slowly get better.
During Halloween she still remained in the PICU recovering. We also had gotten a phone call that same day that our trailer park where we have called home for over 5 year's was closing down... and that we had until December 1st to find another place. My husband and I were both devestated. Not only was lilly in the hospital still recovering from her transplant, but we were getting ready to lose our home and had to find a new place right before the major holidays. It was heartbreaking, and both my husband and I had lost our jobs due to our daughter being in the hospital recovering and we were there to support her... so my husband and I had to travel back home to get everything packed up, and ready to move and to also look for a new place to live. I would stay for a little over a week before heading back to chicago to spend thanksgiving with our daughter. A week after thanksgiving I get a phone call that my father (Lilly's paw paw) was in the ICU in critical condition after having a major stroke. I'm thankful my husband was there at his house that found him and was able to call 911. I was heartbroken and had to make another trip back home (remind you its almost 5 hours away) to see him, before it was too late. After being there for almost a week and made sure he was able to go to a rehab facility to help him reciver and help unpack at our new house, I had to go back to chicago to be with Lilly. Lilly has a lot of rejection going on with her new intestines. It causes her to be in a lot of pain, and she breaks out in bad fevers. Rejection also can sometimes damage the intestines as well if it's bad enough, and has definitely has taken its toll on Lilly. Not only did Lilly spend Christmas in the hospital, but new years as well. After a couple months of rejection and still complications where she was not able to handle feeds, she had to go under one more major surgery. Due to her body rejecting the new organ, it caused enough damage to the intistine where it closed a small section off where they physically had to go in, remove the section of bad intestines, and reconnect the rest what is good once again. And on top of it also connect a new blood vessel to help stimulate more blood flow to it. Lilly has a genetic disorder that she gets blood clots quite easily, so she has to stay on major blood thinners. On top of blood pressure meds and major steroids, it causes her blood sugar to be high well. Where she has to receive insulin periodically.
Thankfully lilly was able to heal really great, and was able to get transferred out of the PICU on the GI floor once again. For several weeks, she continued doing well, started tolerating feeds and was finally able to get out of her room and explore the GI floor to help get her to walk. After several weeks, she was able to hit her goal of 70 mls an hour on her feeding pump, the drs were excited and so were we, we were hoping she would be able to keep the progress up. Then out of no where, rejection hit once again and they had to take her off of feeds because it was causing her to be in so much pain, and since the steroids cause the bodies healing process to be slow, her incision where she has had the major surgeries, started opening back up. It eventually opened up so big you were almost able to see deep down, so they had to place a negative pressure dressing called a wound vac. Thankfully most of it closed almost besides a little portion and they felt comfortable enough to take it off to see how well the rest would heal.
Recently in march, Lilly had to go back into the PICU because she was in so much pain, she was also taking very shallowed breaths. So they thought it would be best to take her out of the GI floor and put her back in the PICU until they were able to control her pain and to help her breath better. So they started her off on a small amount of oxygen to the nose. She had a nasal cannula, but they had to switch it out with and oxygen mask because it helped her out more and made her more comfortable. After 2 weeks, she was able to graduate from the oxygen mask from a nose cannula again, and eventually was able to come off of it during the day! Not only was I happy, but Lilly was happy as well to get those things off her face.
Currently today, we got the ok for Lilly to be transferred back up to the GI floor where she can continue to recover and hopefully continue on progressing. We are all taking it one day at a time, as that is all we can do and glad she is doing much better at this moment. Hopefully we can get back up to her feed goals like she once was at before the acute rejection. The Dr's are not sure when she can come home yet, as in 3 months she would be in the hospital already for a year :'( keep Lilly in your thoughts and prayers, it's so hard seeing go threw so much. She is the sweetest and the strongest little girl I know and her smile brightens up the room and will melt your heart. #TeamLilly
Lilly was born with a condition called Gastroschesis (short gut syndrome), where most of her intestines were born on the outside. Unfortunately her condition was so sever, that the hole where the intestines came out of closed and killed off everything that was on the outside. So just not even a day old, she had to have surgery to remove all the dead intestines, and reconnect what left was good. After the surgeons reconnected everything, Lilly ended up having too short of gut to even tolerate feeds. (She could not tolerate formula or even breast milk) So she had to have a PIC line placed in her arm, and received TPN (IV nutrition) to give her the proper nutrients she needed to survive. Not even two weeks old, Lilly had to have another surgery called a S.T.E.P. procedure (lengthening the intestines) to see if she would finally be able to absorb nutrition in her intestines and handle feeds. Unfortunately, it failed. She was still not able to tolerate feeds. Her condition was so complex, ( odds are1 out of 100 gastro kids) that she had to be transferred to another hospital where they specialize more of her condition. So in August, 2012 (just a few weeks old) got transferred from St. John's hospital in Springfield, IL to Luries Children's hospital in Chicago, IL
After Lilly was transferred, she continued to be in the NICU for over 3 months before graduating out of the NICU, and onto the GI (gastro intestinal) floor before she was able to come home. The surgeons placed a g/j tube (for feeds and gastric drainage) in hopes for her actually to be able to handle feeds and to give medicine in since she was not able to tolerate any meds by mouth, which also ment she was not able to eat or tolerate regular food as well..
Finally after almost 5 months being in the hospital, the drs finally let Lilly go home for the first time.
Almost 6 months later, she had to have another surgery on her intestines. She ended up having an obstruction (blockage) where not only was it causing her to get sick, but also gave her a very bad blood infection where it almost took her life..
After the surgeons went in to fix the blockage, they also wanted to do another lengthening procedure in a final attempt in hoping her intestines would work. Unfortunately it did not... her intestines still had poor absorption and did not work or move properly. So the surgeons and Dr's came together and talked to me and my husband and thought it would be a good idea to place Lilly on the transplant list for a small intestine in hopes of giving her a better life. Lilly was only a little over a year old when she was placed on the transplant list.
We all waited anxiously for almost 4 Years to receive the call for her transplant. After battling threw many blood infections, broken bones (she has Very Brittle bones due to the TPN) and many central line replacements, we Finally received the call on July 14th, 2012 that they had found a donor that was a match. My husband and I couldn't believe it, after all these years of waiting, we finally got the call we have been praying for we were both in tears. It took us about 5 hours to get up to Chicago (we live over 300 miles away) to get her to the hospital to get ready for her major surgery.
Lilly went into surgery about 6 am on July 15th, 2017 and was in the O.R. for over 12 hours when she was finally able to be transferred to the PICU to recover. It was so hard seeing her in so much pain, and on a ventilator... those memories will always be engraved in our minds...
Thankfully she pulled threw, after recovering for almost 2 weeks, she was finally able to be transferred out of the PICU back onto the GI floor where we were hoping she could recover enough so we could bring her home. At the time with how well Lilly was doing, the drs were hoping to have her home between 4-6 weeks if she continued to do well.
Unfortunately in September, Lilly's new intestines were obstructed and we're not getting enough blood flow. So she had to go under another major surgery to help fix it. She was in surgery for over 6 hours that day before transferred back into the PICU to recover. This time, the surgery took more of a toll on her than we all thought was going to happen. When the nurses gave her the proper hydration threw iv, her body was leaking out the fluids on the inside causing to press against her internal organs almost causing her kidneys to fail and she was having a hard time breathing. At the time I had also lost my job, being up in the hospital for so long with her. My husband and I were a huge mess. We were hoping things were going to get better, we didn't want to lose our daughter. So the Dr's had lilly go from a ventilator to an oscillator that was easier on her lungs, and that she had to be placed into a medically induced coma to help her heal safely, she also had to go threw dialysis as well due to her kidneys not working so good. She was like that for almost a month before they were able to safely wean her back to the ventilator and was able to get her out of her induced coma. Eventually day after day, she was starting to slowly get better.
During Halloween she still remained in the PICU recovering. We also had gotten a phone call that same day that our trailer park where we have called home for over 5 year's was closing down... and that we had until December 1st to find another place. My husband and I were both devestated. Not only was lilly in the hospital still recovering from her transplant, but we were getting ready to lose our home and had to find a new place right before the major holidays. It was heartbreaking, and both my husband and I had lost our jobs due to our daughter being in the hospital recovering and we were there to support her... so my husband and I had to travel back home to get everything packed up, and ready to move and to also look for a new place to live. I would stay for a little over a week before heading back to chicago to spend thanksgiving with our daughter. A week after thanksgiving I get a phone call that my father (Lilly's paw paw) was in the ICU in critical condition after having a major stroke. I'm thankful my husband was there at his house that found him and was able to call 911. I was heartbroken and had to make another trip back home (remind you its almost 5 hours away) to see him, before it was too late. After being there for almost a week and made sure he was able to go to a rehab facility to help him reciver and help unpack at our new house, I had to go back to chicago to be with Lilly. Lilly has a lot of rejection going on with her new intestines. It causes her to be in a lot of pain, and she breaks out in bad fevers. Rejection also can sometimes damage the intestines as well if it's bad enough, and has definitely has taken its toll on Lilly. Not only did Lilly spend Christmas in the hospital, but new years as well. After a couple months of rejection and still complications where she was not able to handle feeds, she had to go under one more major surgery. Due to her body rejecting the new organ, it caused enough damage to the intistine where it closed a small section off where they physically had to go in, remove the section of bad intestines, and reconnect the rest what is good once again. And on top of it also connect a new blood vessel to help stimulate more blood flow to it. Lilly has a genetic disorder that she gets blood clots quite easily, so she has to stay on major blood thinners. On top of blood pressure meds and major steroids, it causes her blood sugar to be high well. Where she has to receive insulin periodically.
Thankfully lilly was able to heal really great, and was able to get transferred out of the PICU on the GI floor once again. For several weeks, she continued doing well, started tolerating feeds and was finally able to get out of her room and explore the GI floor to help get her to walk. After several weeks, she was able to hit her goal of 70 mls an hour on her feeding pump, the drs were excited and so were we, we were hoping she would be able to keep the progress up. Then out of no where, rejection hit once again and they had to take her off of feeds because it was causing her to be in so much pain, and since the steroids cause the bodies healing process to be slow, her incision where she has had the major surgeries, started opening back up. It eventually opened up so big you were almost able to see deep down, so they had to place a negative pressure dressing called a wound vac. Thankfully most of it closed almost besides a little portion and they felt comfortable enough to take it off to see how well the rest would heal.
Recently in march, Lilly had to go back into the PICU because she was in so much pain, she was also taking very shallowed breaths. So they thought it would be best to take her out of the GI floor and put her back in the PICU until they were able to control her pain and to help her breath better. So they started her off on a small amount of oxygen to the nose. She had a nasal cannula, but they had to switch it out with and oxygen mask because it helped her out more and made her more comfortable. After 2 weeks, she was able to graduate from the oxygen mask from a nose cannula again, and eventually was able to come off of it during the day! Not only was I happy, but Lilly was happy as well to get those things off her face.
Currently today, we got the ok for Lilly to be transferred back up to the GI floor where she can continue to recover and hopefully continue on progressing. We are all taking it one day at a time, as that is all we can do and glad she is doing much better at this moment. Hopefully we can get back up to her feed goals like she once was at before the acute rejection. The Dr's are not sure when she can come home yet, as in 3 months she would be in the hospital already for a year :'( keep Lilly in your thoughts and prayers, it's so hard seeing go threw so much. She is the sweetest and the strongest little girl I know and her smile brightens up the room and will melt your heart. #TeamLilly
Organizer
Ariel Sampson-Hackworth
Organizer
Morrisonville, IL