Monday, February 19, 2007
MDA Stride & Ride 2007
Please help me in supporting the Muscular Dystrophy Association…
My name is David Loveland and I am a Registered Nurse for Henry Ford Hospital in Detroit, Michigan. My wife LeeAnn and I were very fortunate to become parents December 06, 2005. It was a day that changed our lives in more ways than one. While we are very lucky to have been blessed with a beautiful baby girl (Liliana Sue Loveland), we were very surprised to find out that she has a rare neuromuscular condition called Nemaline Myopathy. Some of our doctors told us that she would not live to see a year. She was born with severe hypotonia meaning that she had very little muscle tone. While she could make small movements in the amniotic fluid, in the real world she could not move an inch. Eventually this would lead her into respiratory distress as her respiratory muscles tired out. From the day she was born, she spent 100 days in the NICU. She went through a lot in her 100 day stay including, bipap, intubation, tracheostomy, EMG, muscle biopsy, PEG tube placement, and required CPR on one occasion. This was a hard time for our family. We made it through those tough 100 days and were very happy to finally take Liliana home. While it is nice to be home, each day is still an uphill battle. Liliana is approved for private duty nursing (16-hours per day) which is tough to get filled consistently. She remains trached and on a ventilator requiring constant monitoring, she undergoes extensive physical therapy by both ourselves and certified therapists, she has multiple different doctors which we have to take her to see regularly with her many medical devices and pieces of equipment, and she still has and will always have some amount of hypotonia. Despite all of this, she continues to amaze us with each and every day. She is a fighter and we have set her limits high because she has shown us that she can handle anything that we throw at her. Also, we have had a tremendous amount of support from both our families and friends. Insurance has been a chore in itself to deal with to make sure that everything gets covered, but for the most part coverage has been awesome between our three insurances. What I am trying to say is that our family has been very blessed.
There are countless families out there who have not been as fortunate as we are. I read stories every day about other families going through the same thing but they do not have the resources and support that we do. Whether there is lack of family support, abandonment by a spouse, lack of insurance coverage, lack of adequate income to meet needs, these families need lots of help. For most of them, the only way that they can get that help is through the Muscular Dystrophy Association.
Since Liliana was born and we found out that she has a neuromuscular condition, we have put a lot of our time and energy into participating in and raising money for the Muscular Dystrophy Association's Stride and Ride event. This is a charity event held annually and is put on by a local branch of the MDA. It is typically held at a large location such as a mall before opening hours. People affected by a neuromuscular disease, their families, and friends all get together with the donations that they have collected. As a group we stride (walk), and ride (in a wheelchair for those affected by a neuromuscular disease) in laps around the mall.
This year the MDA Stride and Ride will be held on March 11, 2007 at the Oakland Mall. The money that is collected goes toward MDA clinics, support groups, summer camp, medical equipment, health education, and research to defeat some 43 neuromuscular diseases that affect people of all ages right here in our community. Last year our team of friends and family "Liliana's Angels", who walked in honor of Liliana Sue Loveland, raised the most out of any other group. My wife and I received an award and had a few minutes of air time on the local MDA telethon for "Jerry's Kids". It makes us feel so good to know how many people we have helped and to know that the money raised could eventually lead to a research breakthrough that could help our own precious Liliana.
It is my hope that our story has moved you and you can find it in your heart to donate to a great cause. We would love to be the top donating team again this year, but we can't do it without your help.
To donate to the MDA Stride and Ride 2007 please visit:
MDA Stride & Ride 2007
My name is David Loveland and I am a Registered Nurse for Henry Ford Hospital in Detroit, Michigan. My wife LeeAnn and I were very fortunate to become parents December 06, 2005. It was a day that changed our lives in more ways than one. While we are very lucky to have been blessed with a beautiful baby girl (Liliana Sue Loveland), we were very surprised to find out that she has a rare neuromuscular condition called Nemaline Myopathy. Some of our doctors told us that she would not live to see a year. She was born with severe hypotonia meaning that she had very little muscle tone. While she could make small movements in the amniotic fluid, in the real world she could not move an inch. Eventually this would lead her into respiratory distress as her respiratory muscles tired out. From the day she was born, she spent 100 days in the NICU. She went through a lot in her 100 day stay including, bipap, intubation, tracheostomy, EMG, muscle biopsy, PEG tube placement, and required CPR on one occasion. This was a hard time for our family. We made it through those tough 100 days and were very happy to finally take Liliana home. While it is nice to be home, each day is still an uphill battle. Liliana is approved for private duty nursing (16-hours per day) which is tough to get filled consistently. She remains trached and on a ventilator requiring constant monitoring, she undergoes extensive physical therapy by both ourselves and certified therapists, she has multiple different doctors which we have to take her to see regularly with her many medical devices and pieces of equipment, and she still has and will always have some amount of hypotonia. Despite all of this, she continues to amaze us with each and every day. She is a fighter and we have set her limits high because she has shown us that she can handle anything that we throw at her. Also, we have had a tremendous amount of support from both our families and friends. Insurance has been a chore in itself to deal with to make sure that everything gets covered, but for the most part coverage has been awesome between our three insurances. What I am trying to say is that our family has been very blessed.
There are countless families out there who have not been as fortunate as we are. I read stories every day about other families going through the same thing but they do not have the resources and support that we do. Whether there is lack of family support, abandonment by a spouse, lack of insurance coverage, lack of adequate income to meet needs, these families need lots of help. For most of them, the only way that they can get that help is through the Muscular Dystrophy Association.
Since Liliana was born and we found out that she has a neuromuscular condition, we have put a lot of our time and energy into participating in and raising money for the Muscular Dystrophy Association's Stride and Ride event. This is a charity event held annually and is put on by a local branch of the MDA. It is typically held at a large location such as a mall before opening hours. People affected by a neuromuscular disease, their families, and friends all get together with the donations that they have collected. As a group we stride (walk), and ride (in a wheelchair for those affected by a neuromuscular disease) in laps around the mall.
This year the MDA Stride and Ride will be held on March 11, 2007 at the Oakland Mall. The money that is collected goes toward MDA clinics, support groups, summer camp, medical equipment, health education, and research to defeat some 43 neuromuscular diseases that affect people of all ages right here in our community. Last year our team of friends and family "Liliana's Angels", who walked in honor of Liliana Sue Loveland, raised the most out of any other group. My wife and I received an award and had a few minutes of air time on the local MDA telethon for "Jerry's Kids". It makes us feel so good to know how many people we have helped and to know that the money raised could eventually lead to a research breakthrough that could help our own precious Liliana.
It is my hope that our story has moved you and you can find it in your heart to donate to a great cause. We would love to be the top donating team again this year, but we can't do it without your help.
To donate to the MDA Stride and Ride 2007 please visit:
MDA Stride & Ride 2007
Sunday, February 18, 2007
On To Better Times
Well, if some of you remember, in one of my last posts I mentioned that I was possably going to get a new feeding tube that would bypass my stomach and hopefully put an end to all of my spitting up. I had been spitting up multiple times a day pretty much every day since I've been eathing through a gastric tube. This is not good because the acid in my stomach will erode my esophagus and lead to increased risk of esophageal cancer. The problem is that because of my neuromuscular condition my stomach does not empty as fast as it should. This allows food to build up and stay in my stomach even when I am through eating. When I would sit up or try to move around and play up it would come. Usually you would be able to take a medication called Reglan to help the stomach empty faster, but with me it did not work and seemed to make me spit up more than normal. So mommy and daddy took me to the doctor to see what we could do about all this. What the doctor suggested was switching my gastric tube to a g-j tube. This tube would go in the same spot as my old gastric tube, but it is longer so that it goes right through the sphincter in the bottom of the stomach and into the jejunum which is part of the small intestines. Supposedly this was going to be a magic fix. However, mommy and daddy were never told about one very important side effect. Without knowing this information, mommy and daddy decided to go ahead with the new feeding tube.
The day came for the placement of the new tube. Mommy and daddy were nervous, because they knew it was going to hurt and because they would not be there to commfort me during the procedure (no anesthetic or sedation would be administered). They sadly left the room as the procedure was getting ready to start. They anxiously waited about 20 minutes for some information. When they finally came back into the room, they saw me crying like they had never seen me cry before. They quickly began trying to comfort me but with little success. Every time a stranger came close to me I got even more upset. Daddy finally picked me up and put me in the stroller. He gave me a toy and lots of kisses and I started to settle down. I never want to go through that again.
We finally got the procedure out of the way and I was ready to see if it was going to work as advertised. Mommy and daddy took me home so that I could eat (through the new tube) and take a nap since I had not eaten in a while and it was well past my nap time. Things were going perfect, and then it started. My first spit up, even after the new tube I was still spitting up. However, this time it would be much worse. I was not spitting up formula, I was spitting up bile. This is that very important side effect that mommy and daddy wished they had known about before the procedure. Apparently, the new tube going through my stomach and into the intestines was not allowing my sphincter to close tightly around the tube. This was allowing bile from the small intestines to back up into my stomach and cause me to spit up. I continued to spit up for a week despite mommy and daddy draining the bile from my stomach through the gastric port on the new tube. The good news is that I was finally keeping all my formula down, the bad news was that I would spit up bile multiple times a day for a week. Mommy and daddy kept getting the run around from my doctors who seemed to act like it was no big deal. If I must say so myself, I think that around 1000ml of bile over the course of a week from a little thing like myself demands some urgent attention. A week later and mommy and daddy still were not able to get the doctors to act. I spit up the morning of that 7th day and my heart rate shot up to over 200 beats per minute. Mommy talked to multiple doctors over a course of a few hours to try and get something done ASAP, still nothing was coming together. Then mommy and daddy took things into their own hands. My nursing agency apparently stocks the feeding tube that I would need to switch back to in order to stop the bile from backing up into my stomach. Mommy drove for a couple of hours to get it. When she got home, daddy pulled out the old one and put the new one in. Besides, it is something that they are going to have to do every few months anyway. These tubes need to be switched every few months and the one that I switched back to to stop the bile is changed in the home anyway. It was either this, or wait to see the doctor in the morning and go through the night with a dangerously high heart rate. It doesn't take a rocket scientist to make that decision. I was much happier when daddy put the new tube in. I felt a sense of instant relief. I didn't spit up the rest of the day. Mommy and daddy also got the doctor to try a different medication to help empty my stomach faster. It's called erythromycin. It's an antibiotic, but in low doses it seems to improve gastrointestinal motility. So far it seems to be working. I've spit up a couple times, but not nearly as much as I used to. I'm much happier now that I'm not spitting bile and mommy and daddy are very relieved as well. So, on to better things. Here are some recent pictures of me. I continue to gain neck and back strength, hence all the pictures of me sitting up. Thank you all for reading
The day came for the placement of the new tube. Mommy and daddy were nervous, because they knew it was going to hurt and because they would not be there to commfort me during the procedure (no anesthetic or sedation would be administered). They sadly left the room as the procedure was getting ready to start. They anxiously waited about 20 minutes for some information. When they finally came back into the room, they saw me crying like they had never seen me cry before. They quickly began trying to comfort me but with little success. Every time a stranger came close to me I got even more upset. Daddy finally picked me up and put me in the stroller. He gave me a toy and lots of kisses and I started to settle down. I never want to go through that again.
We finally got the procedure out of the way and I was ready to see if it was going to work as advertised. Mommy and daddy took me home so that I could eat (through the new tube) and take a nap since I had not eaten in a while and it was well past my nap time. Things were going perfect, and then it started. My first spit up, even after the new tube I was still spitting up. However, this time it would be much worse. I was not spitting up formula, I was spitting up bile. This is that very important side effect that mommy and daddy wished they had known about before the procedure. Apparently, the new tube going through my stomach and into the intestines was not allowing my sphincter to close tightly around the tube. This was allowing bile from the small intestines to back up into my stomach and cause me to spit up. I continued to spit up for a week despite mommy and daddy draining the bile from my stomach through the gastric port on the new tube. The good news is that I was finally keeping all my formula down, the bad news was that I would spit up bile multiple times a day for a week. Mommy and daddy kept getting the run around from my doctors who seemed to act like it was no big deal. If I must say so myself, I think that around 1000ml of bile over the course of a week from a little thing like myself demands some urgent attention. A week later and mommy and daddy still were not able to get the doctors to act. I spit up the morning of that 7th day and my heart rate shot up to over 200 beats per minute. Mommy talked to multiple doctors over a course of a few hours to try and get something done ASAP, still nothing was coming together. Then mommy and daddy took things into their own hands. My nursing agency apparently stocks the feeding tube that I would need to switch back to in order to stop the bile from backing up into my stomach. Mommy drove for a couple of hours to get it. When she got home, daddy pulled out the old one and put the new one in. Besides, it is something that they are going to have to do every few months anyway. These tubes need to be switched every few months and the one that I switched back to to stop the bile is changed in the home anyway. It was either this, or wait to see the doctor in the morning and go through the night with a dangerously high heart rate. It doesn't take a rocket scientist to make that decision. I was much happier when daddy put the new tube in. I felt a sense of instant relief. I didn't spit up the rest of the day. Mommy and daddy also got the doctor to try a different medication to help empty my stomach faster. It's called erythromycin. It's an antibiotic, but in low doses it seems to improve gastrointestinal motility. So far it seems to be working. I've spit up a couple times, but not nearly as much as I used to. I'm much happier now that I'm not spitting bile and mommy and daddy are very relieved as well. So, on to better things. Here are some recent pictures of me. I continue to gain neck and back strength, hence all the pictures of me sitting up. Thank you all for reading
