Please join us and help give back to Cook Children's Medical Center
Please bring a new toy or baby item
Santa will be celebrating with us so please stop by.
We will have plenty of to eat and drink
Mayfield Road Baptist Church
1701 E Mayfield Road
Arlington, Texas
Sunday, December 13th
3-5PM
Julie and Kat are the two Child Life Specialist we've worked with. They have given us great information with several ways to help
Baby Love List
This list includes things such as Board books and Bouncers and Swings to things like infant socks and sleepers.
https://www.cookchildrens.org/giving/moreways/Pages/BabyLove.aspx
Wish Lists
Babies 'R Us
www.babiesrus.com
First Name: Cook
Last Name: CMC
Target
www.target.com
Wish List
"Organization"
Cook
Thursday, November 19, 2009
Our Story
Cook Children’s Medical Center has been extremely wonderful to us over the past year and we’ve wanted to do something for them. They have taken such good care of Colton and us throughout this battle.
While we were at the hospital and in and out of doctors offices’ we realized there just wasn’t a lot of “toys” for little ones. We would always bring an extra diaper bag full of toys and books for Colton. At his first surgery we had Elmo Live with us and the nurses kept stopping by to check Elmo out. It kept Colton occupied until they had him asleep in the back and then a nurse brought Elmo back so we could have him by his bed when Colton work up. While we were there in July for his big surgery we scoured the various floors and playrooms looking for age appropriate toys to occupy Colton. The selection was very poor for the infant/toddler age. Colton did love the red wagon and we would take him for rides all over the hospital. We had thought then that we would see about donating a red wagon for other kids to enjoy the way Colton did.
A month later we found ourselves back at CCMC for another surgery. While waiting to see him in Recovery we had an idea to do a Christmas party with friends and family and have them bring a toy to donate back to CCMC. Our small Christmas party grew into hosting a toy drive. I’ve been in contact with several people from CCMC and everyone is excited about this event.
You never expect for your full-term, healthy baby to spend the next year in and out of the hospital and bouncing all over DFW to different doctors/specialist. When people would ask what was wrong with Colton and why was he always sick and to be so extremely sick at that…our answer was “he has reflux”. It’s hard to believe how ferocious reflux can be. So many people would say “oh my baby had reflux, it’ll be fine”. Well, it’s not fine when you can’t lay your newborn on his back to change his diaper because every time you do, he has chokes, gags, and turns blue. That’s our world with severe reflux and here is our story.
When Colton was 3 weeks old I took him back to the pedi and told her he just couldn’t be “right”, something was wrong with him. He cried all the time and it was a weird cry at that. He made funny sounds but he was our first baby and babies make funny sounds. We didn’t know what the gurgling sounds were but assumed out of ignorance that all babies did it. The pedi was holding him and checking him out when he started refluxing, gurgling, and then screamed. Turns out his “weird cry/scream” was because he was hoarse from the acid burning his throat. She asked me a few questions and then said he has Silent Reflux. The lack of spit up threw me off. I always assumed if you had reflux then the baby would spit up all the time. She gave him a prescription for Zantac and told me to eliminate dairy from my diet and to continue nursing.
The Zantac seemed to work for a few weeks but then things started to go back downhill again and quickly. Another change of reflux meds and also stopped nursing and tried several different formulas. We ended up with Simliac Alimentum and it worked wonders, at least for a few months anyway. After a stint with bloody diarrhea the GI switched him to a prescription formula called EleCare. We plugged along with a good day here and there. Mostly we had a good few hours and the rest were spent with fear that he would choke and stop breathing again but mostly he would scream in pain for hours on end.
Everyone has fears. Some are irrational and mine was that Colton would die at home before I could help him or get him the help he needs. Too many times has he choked while refluxing and turned colors at home and we panic. And once it happens so many times you get to the point were it’s your “normal”, so you're thinking how long should I wait before I call 911, I mean he always starts breathing again. So many times has he choked on his spit up/reflux and started gagging and stopped breathing. Every time is just as scary as the first time though.
The first time, Thanksgiving Day 2008, he was 2 months old at this point. Brian and I were getting dressed when Colton got quiet (he was cooing a lot at this point) and then I heard him choking. I screamed and ran down the hall yelling at Brian that Colton was choking and not breathing. He then threw up all over the living room. I mean now, we laugh at it-- I shit you not, there was puke on the other side of the living room wall! Anyway, I held him face down so that he was facing the floor and he would puke on the floor. It was coming out so violent we couldn't turn him upright without him choking. We hopped in the truck and drove to the hospital. This was the 1st time we drove him to the ER out of his carseat. I held him in the backseat making sure he wasn't going to choke and die. I justify this by the fact that we live less than 1 mile from the hospital and also when we put him in the carseat he was reclined back and would choked. Anyway, my hair was in rollers and I wasn't even wearing a bra. Brian and I were both in t-shirts, pj pants, and flip flops. We ran into the ER and I was in tears and they immediately rushed us to the back and got him taken care of. So yeah, first Thanksgiving was spent in the hospital. At this point, this is where things started to spiral out of control.There would be many times his reflux was so bad that I would sleep in the big chair in the living room and Brian on the couch because if you laid him on his back (to change a diaper, put him to bed, get him dressed) he would reflux, choke, turn colors and sometimes stop breathing. We spent many nights sleeping like that in the den, taking turns holding Colton upright on our chest, making sure he was still breathing. Those were the scariest. We were both so afraid that he would reflux, choke, and die in the middle of the night and we would never know. Every night I would worry that I was going to wake up to a dead baby.
Things spiraled out of control and we were at the pedi’s office or hospital at least once/week from Thanksgiving till February with RSV, broncholitis, pneumonia, ear infections, and the random cold or stomach virus he would pick up. We prayed that after the cold and flu season were over we would have a happy, healthy baby.
At 6 months, when I took Colton for his well-check (we had been in the week before for a sick visit) the pedi came in and said she could no longer give Colton the care that he needed and referred us to a pedi pulmonologist in Plano she sends her "high needs" kids to. My heart sank. It’s hard to hear that your own pedi realizes that your child needs more care than what she can provide. The reflux was not getting better, his breathing problems were getting worse, and he was always sick. There had not been a visit in months that he was not wheezing. We had to determine if indeed the reflux was really that bad or if he had an underlying respiratory issue that we didn’t know about.
The pedi pulmo was very thorough and scheduled some more tests including an Upper GI and Swallow Study. We were at his office for probably over 4 hours talking with the dr. Colton had reflux induced asthma (who would have thought of such a thing), a motility issue, and was put on Reglan for the reflux and motility problems, and higher doses of the two steroids we used for his breathing treatments. We were always told by the various drs, specialist, through the many tests, and others that all his problems were because of the severe reflux and that he would out grow his reflux in time. After all, reflux is not uncommon in babies (maybe not to this extent) but how many kids with reflux do you know?? Not many. So we went along and upped his meds till he was maxed out. He was taking so much Prevacid (more than an adult takes) that while we were inpatient at Cook Children's, they were not comfortable giving him that amount while he was there and gave him a smaller dose. That was another one of those times when it sinks in and hits home.Time went by and he never got better, and in fact he was getting worse. He was aspirating every time he ate/drank. You could feel and see him do it. As soon as he would take a bite/drink he would start wheezing and you could feel it in his chest and back. Pneumonia would always set up and he would be sick. At times we would do as many as 5-7 breathing treatments a day. He was destroying his lungs every time he ate.
We always had a problem with him refusing bottles. He would see a bottle and start screaming and shaking his head from side to side and then as he got older he would put his hands up and push the bottle away. He would see the bottle and know that pain that came from eating and just refuse to take a bottle. It was always a fight to feed him. Too many times we just couldn’t get him to take a bottle and would be calling the pedi because he was not having wet diapers, wouldn’t take a bottle. I remember getting calls from the daycare while I was at work and would leave in tears because I knew that the pedi would want to put him in the hospital to get him hydrated again. The pedi told us to give him popsicles, sprite, anything, to get him to get hydrated before we ended up in the hospital. We lived our life day to day. Never knowing if he was going to take a bottle or eat some baby food. We dodged the hospital so many times but looking back it probably would have been better if he had ended up in the hospital more. Maybe then we would have known how serious it was and would have gotten him help sooner.
The spring brought chronic ear infections and more wheezing. The ear infections (and wheezing for that matter) were suspected to be from the terrible reflux. He had 3 double ear infections in 6 weeks and was begging to show some scaring in his ears.
We pulled him out of daycare in the spring. I hated to pull him out though it was for his health. People say no one can care for your child the way you can. This daycare did though. They were so good with him and knew how sick he was. He would get the love and care there. I couldn’t quit my job since I had to work for our insurance. We feel right in the middle and couldn’t get any type of assistance. His doctors wanted him out of daycare months earlier but had no one to take care of him. We made the best of our situation and my boss and coworkers were very understanding of all the time I had to take off. My sister was in college and was a total lifesaver. She started staying home with Colton and would help us out. She would give him his meds, nebulizer treatments, and take him to doctor appointments where I would meet them there so I could take as little time off of work as possible. We never took Colton out of the house. His immune system was too weak to be around other people. He was still always sick.
In May he had another test done. Colton was on a feeding strike (it had been about 2 weeks and he would take in less than 10 ounces/day and scream 24/7). I couldn’t take him to the doctor by myself anymore. He would scream all day, everyday from the pain. This time I had my mother-in-law with me. The GI examined Colton and then my mother-in-law would take him out in the hall so that I could hear what the dr said. She wanted to do another test called a pH probe study. His reflux was so bad and out of hand that he could not go off his meds the required several days prior to the test. Instead, the GI did another similar test (Impendence Probe) that allowed him to be on his meds. They also did a scope (EGD) and took some biopsies looking for more answers. We were sent home from CCMC with a recorder box and Colton had a small wire up his nose going down his throat for the next 24 hours. The next morning I had to pull the wire back out through his nose (so not fun) and take everything back to CCMC for them to read the results. The GI called that day and said it showed “significant reflux” and that we needed to talk to a surgeon. I asked if there was another option and she just said go talk to him and see what he says. For him to have shown “significant reflux” while on such a high dose of meds, his reflux was so out of control and we had to do something.
We meet with the surgeon that week. He told us about the Fundo/Nissen surgery that they do for reflux. Colton meet every last requirement. We liked the surgeon and he didn’t pressure us, just laid out everything and was very friendly, personable, and informative. In June it became evident he was not going to out grow his reflux and he certainly wasn't getting better. We got several opinions on about the surgery for his other doctors. We were at the pedi’s office for another ear infection and I broke down and asked her advice. She was very honest and said it had been a long time since she had seen a baby as sick as Colton from reflux.
In June he was still wheezing and sick. The pulmo pedi said you just can’t blame this on cold/flu season or allergies. It was June and this was his “low season”. That’s when the pulmo pedi did a deep culture in his lungs and found two types of bacterial infections and he had pneumonia again. The bacterial infections are graded on a 0-4 scale with 4 being the worst. Both bacterial infections were 4+ so they were really bad. We decided surgery was necessary and had to be done. We just had to get Colton well enough for surgery. After a month of high dose, twice daily, antibiotics he was well enough for surgery. His original surgery date was cancelled because of the pneumonia.
On July 15, 2009 Colton had his fundo and G-button placed. No amount of preparation can ever prepare you to watch your child go through a major surgery. After surgery it was tough to see him. He was on Morphine and would moan and groan and couldn't move. He would look up at us and then roll his eyes back into his head and doze off again. It's awful to see your baby in so much pain and you can't do anything about it.
The recovery room nurses were the best. They made sure Colton, Brian, and I were comfortable. They brought in a mobile to attach to his crib while we waited for a room upstairs. The mobile played classical music and Colton would calm down with it playing. The first night was the worst. His pain was not being managed well and I had to beg them to give him another dose of Morphine.
The next morning he was fine though! He pulled out his IV, drainage tube, and was jumping in his crib when the surgeon came in. Overall, the surgery was the best choice we have made for him as his parents. He's a totally different child, he's healthy, plays, and rarely do breathing treatments (he had croup and we did them for that). He rarely wheezes and is a million times better. He does have some delays from being so sick, but with therapy we're working on them.
I have a lot of guilt and feel that we should have not held him back and done the surgery months ago. The surgeon even said it should have been done months ago, but when I told him I felt so much guilt, he made me feel better and told us that we did everything we're supposed to do as parents. You never want to rush into surgery and yes, most babies outgrow it, and we explored many other options but it was at the point where being on such a high does of meds and doing other treatments weren't even controlling. I remember being at the pedi office talking to his dr and she said he'd probably have esophageal cancer by the time he was 20 from all the damage from the reflux. It's one thing for it to be controlled by meds but when it's not under control, and he was destroying his lungs, and he was in and out of the hospital and doctors offices for what they say are "life threatening conditions" you have to make that next step.
The whole point of the surgery was to make his esophagus a one-way highway so he doesn't throw up/reflux. He can't burp or throw up now and the surgeon said he never will either (only time will tell so we'll see). The reflux is almost non-existent at this point. He does have a bad day from time to time, but is doing a million times better.
His body has adjusted well to his new anatomy. He no longer burps so all that air/gas has to find a way out, so now he farts all the time.
The downside is when he gets a stomach bug or something he will retch (dry heaving) and turn red, his eyes just pop out and he looks at you with a terrifying look on his face. We're his parents and we're supposed to protect him and help him and we can't. We just look back at him and try to talk to him and calm him down. Luckily at this point he still has his g-tube in and we can drain out his stomach contents. I don't know what we'll do when he gets sick and doesn't have his g-tube. This is something we’ll have to learn to live with and deal with.
Colton is almost 15 months old and is 4 months post-op. His quality of life is so much better. Everything from the pneumoia and resp infections to the ear infections all ended up being related to reflux. He is such a happier child and it shows. He loves to be outside and play all day. He sleeps better now too. Overall, he's doing very well. He is gaining weight and eating. He is still not a great eater but he will eat, which is a huge step!! He has therapy through ECI twice a month with a dietician and an OT. They make sure he is growing and gaining weight like he should and also work with him on eating. Tomorrow Colton will start doing weekly therapy at the Feeding and Rehab Clinic and Cook Children's.
He will most likey have his g-tube for another year. He has lots of granulation tissue so we see the surgeon about once a month for him to remove it. The first round was so bad Colton had to go back for a minor out-patient surgery to remove it all. Now we use a cream a few times a week and about once a month the surgeon will use Silver Nitrate to freeze it off.
Anyway, that's our story (bits and pieces and all too long).
While we were at the hospital and in and out of doctors offices’ we realized there just wasn’t a lot of “toys” for little ones. We would always bring an extra diaper bag full of toys and books for Colton. At his first surgery we had Elmo Live with us and the nurses kept stopping by to check Elmo out. It kept Colton occupied until they had him asleep in the back and then a nurse brought Elmo back so we could have him by his bed when Colton work up. While we were there in July for his big surgery we scoured the various floors and playrooms looking for age appropriate toys to occupy Colton. The selection was very poor for the infant/toddler age. Colton did love the red wagon and we would take him for rides all over the hospital. We had thought then that we would see about donating a red wagon for other kids to enjoy the way Colton did.
A month later we found ourselves back at CCMC for another surgery. While waiting to see him in Recovery we had an idea to do a Christmas party with friends and family and have them bring a toy to donate back to CCMC. Our small Christmas party grew into hosting a toy drive. I’ve been in contact with several people from CCMC and everyone is excited about this event.
You never expect for your full-term, healthy baby to spend the next year in and out of the hospital and bouncing all over DFW to different doctors/specialist. When people would ask what was wrong with Colton and why was he always sick and to be so extremely sick at that…our answer was “he has reflux”. It’s hard to believe how ferocious reflux can be. So many people would say “oh my baby had reflux, it’ll be fine”. Well, it’s not fine when you can’t lay your newborn on his back to change his diaper because every time you do, he has chokes, gags, and turns blue. That’s our world with severe reflux and here is our story.
When Colton was 3 weeks old I took him back to the pedi and told her he just couldn’t be “right”, something was wrong with him. He cried all the time and it was a weird cry at that. He made funny sounds but he was our first baby and babies make funny sounds. We didn’t know what the gurgling sounds were but assumed out of ignorance that all babies did it. The pedi was holding him and checking him out when he started refluxing, gurgling, and then screamed. Turns out his “weird cry/scream” was because he was hoarse from the acid burning his throat. She asked me a few questions and then said he has Silent Reflux. The lack of spit up threw me off. I always assumed if you had reflux then the baby would spit up all the time. She gave him a prescription for Zantac and told me to eliminate dairy from my diet and to continue nursing.
The Zantac seemed to work for a few weeks but then things started to go back downhill again and quickly. Another change of reflux meds and also stopped nursing and tried several different formulas. We ended up with Simliac Alimentum and it worked wonders, at least for a few months anyway. After a stint with bloody diarrhea the GI switched him to a prescription formula called EleCare. We plugged along with a good day here and there. Mostly we had a good few hours and the rest were spent with fear that he would choke and stop breathing again but mostly he would scream in pain for hours on end.
Everyone has fears. Some are irrational and mine was that Colton would die at home before I could help him or get him the help he needs. Too many times has he choked while refluxing and turned colors at home and we panic. And once it happens so many times you get to the point were it’s your “normal”, so you're thinking how long should I wait before I call 911, I mean he always starts breathing again. So many times has he choked on his spit up/reflux and started gagging and stopped breathing. Every time is just as scary as the first time though.
The first time, Thanksgiving Day 2008, he was 2 months old at this point. Brian and I were getting dressed when Colton got quiet (he was cooing a lot at this point) and then I heard him choking. I screamed and ran down the hall yelling at Brian that Colton was choking and not breathing. He then threw up all over the living room. I mean now, we laugh at it-- I shit you not, there was puke on the other side of the living room wall! Anyway, I held him face down so that he was facing the floor and he would puke on the floor. It was coming out so violent we couldn't turn him upright without him choking. We hopped in the truck and drove to the hospital. This was the 1st time we drove him to the ER out of his carseat. I held him in the backseat making sure he wasn't going to choke and die. I justify this by the fact that we live less than 1 mile from the hospital and also when we put him in the carseat he was reclined back and would choked. Anyway, my hair was in rollers and I wasn't even wearing a bra. Brian and I were both in t-shirts, pj pants, and flip flops. We ran into the ER and I was in tears and they immediately rushed us to the back and got him taken care of. So yeah, first Thanksgiving was spent in the hospital. At this point, this is where things started to spiral out of control.There would be many times his reflux was so bad that I would sleep in the big chair in the living room and Brian on the couch because if you laid him on his back (to change a diaper, put him to bed, get him dressed) he would reflux, choke, turn colors and sometimes stop breathing. We spent many nights sleeping like that in the den, taking turns holding Colton upright on our chest, making sure he was still breathing. Those were the scariest. We were both so afraid that he would reflux, choke, and die in the middle of the night and we would never know. Every night I would worry that I was going to wake up to a dead baby.
Things spiraled out of control and we were at the pedi’s office or hospital at least once/week from Thanksgiving till February with RSV, broncholitis, pneumonia, ear infections, and the random cold or stomach virus he would pick up. We prayed that after the cold and flu season were over we would have a happy, healthy baby.
At 6 months, when I took Colton for his well-check (we had been in the week before for a sick visit) the pedi came in and said she could no longer give Colton the care that he needed and referred us to a pedi pulmonologist in Plano she sends her "high needs" kids to. My heart sank. It’s hard to hear that your own pedi realizes that your child needs more care than what she can provide. The reflux was not getting better, his breathing problems were getting worse, and he was always sick. There had not been a visit in months that he was not wheezing. We had to determine if indeed the reflux was really that bad or if he had an underlying respiratory issue that we didn’t know about.
The pedi pulmo was very thorough and scheduled some more tests including an Upper GI and Swallow Study. We were at his office for probably over 4 hours talking with the dr. Colton had reflux induced asthma (who would have thought of such a thing), a motility issue, and was put on Reglan for the reflux and motility problems, and higher doses of the two steroids we used for his breathing treatments. We were always told by the various drs, specialist, through the many tests, and others that all his problems were because of the severe reflux and that he would out grow his reflux in time. After all, reflux is not uncommon in babies (maybe not to this extent) but how many kids with reflux do you know?? Not many. So we went along and upped his meds till he was maxed out. He was taking so much Prevacid (more than an adult takes) that while we were inpatient at Cook Children's, they were not comfortable giving him that amount while he was there and gave him a smaller dose. That was another one of those times when it sinks in and hits home.Time went by and he never got better, and in fact he was getting worse. He was aspirating every time he ate/drank. You could feel and see him do it. As soon as he would take a bite/drink he would start wheezing and you could feel it in his chest and back. Pneumonia would always set up and he would be sick. At times we would do as many as 5-7 breathing treatments a day. He was destroying his lungs every time he ate.
We always had a problem with him refusing bottles. He would see a bottle and start screaming and shaking his head from side to side and then as he got older he would put his hands up and push the bottle away. He would see the bottle and know that pain that came from eating and just refuse to take a bottle. It was always a fight to feed him. Too many times we just couldn’t get him to take a bottle and would be calling the pedi because he was not having wet diapers, wouldn’t take a bottle. I remember getting calls from the daycare while I was at work and would leave in tears because I knew that the pedi would want to put him in the hospital to get him hydrated again. The pedi told us to give him popsicles, sprite, anything, to get him to get hydrated before we ended up in the hospital. We lived our life day to day. Never knowing if he was going to take a bottle or eat some baby food. We dodged the hospital so many times but looking back it probably would have been better if he had ended up in the hospital more. Maybe then we would have known how serious it was and would have gotten him help sooner.
The spring brought chronic ear infections and more wheezing. The ear infections (and wheezing for that matter) were suspected to be from the terrible reflux. He had 3 double ear infections in 6 weeks and was begging to show some scaring in his ears.
We pulled him out of daycare in the spring. I hated to pull him out though it was for his health. People say no one can care for your child the way you can. This daycare did though. They were so good with him and knew how sick he was. He would get the love and care there. I couldn’t quit my job since I had to work for our insurance. We feel right in the middle and couldn’t get any type of assistance. His doctors wanted him out of daycare months earlier but had no one to take care of him. We made the best of our situation and my boss and coworkers were very understanding of all the time I had to take off. My sister was in college and was a total lifesaver. She started staying home with Colton and would help us out. She would give him his meds, nebulizer treatments, and take him to doctor appointments where I would meet them there so I could take as little time off of work as possible. We never took Colton out of the house. His immune system was too weak to be around other people. He was still always sick.
In May he had another test done. Colton was on a feeding strike (it had been about 2 weeks and he would take in less than 10 ounces/day and scream 24/7). I couldn’t take him to the doctor by myself anymore. He would scream all day, everyday from the pain. This time I had my mother-in-law with me. The GI examined Colton and then my mother-in-law would take him out in the hall so that I could hear what the dr said. She wanted to do another test called a pH probe study. His reflux was so bad and out of hand that he could not go off his meds the required several days prior to the test. Instead, the GI did another similar test (Impendence Probe) that allowed him to be on his meds. They also did a scope (EGD) and took some biopsies looking for more answers. We were sent home from CCMC with a recorder box and Colton had a small wire up his nose going down his throat for the next 24 hours. The next morning I had to pull the wire back out through his nose (so not fun) and take everything back to CCMC for them to read the results. The GI called that day and said it showed “significant reflux” and that we needed to talk to a surgeon. I asked if there was another option and she just said go talk to him and see what he says. For him to have shown “significant reflux” while on such a high dose of meds, his reflux was so out of control and we had to do something.
We meet with the surgeon that week. He told us about the Fundo/Nissen surgery that they do for reflux. Colton meet every last requirement. We liked the surgeon and he didn’t pressure us, just laid out everything and was very friendly, personable, and informative. In June it became evident he was not going to out grow his reflux and he certainly wasn't getting better. We got several opinions on about the surgery for his other doctors. We were at the pedi’s office for another ear infection and I broke down and asked her advice. She was very honest and said it had been a long time since she had seen a baby as sick as Colton from reflux.
In June he was still wheezing and sick. The pulmo pedi said you just can’t blame this on cold/flu season or allergies. It was June and this was his “low season”. That’s when the pulmo pedi did a deep culture in his lungs and found two types of bacterial infections and he had pneumonia again. The bacterial infections are graded on a 0-4 scale with 4 being the worst. Both bacterial infections were 4+ so they were really bad. We decided surgery was necessary and had to be done. We just had to get Colton well enough for surgery. After a month of high dose, twice daily, antibiotics he was well enough for surgery. His original surgery date was cancelled because of the pneumonia.
On July 15, 2009 Colton had his fundo and G-button placed. No amount of preparation can ever prepare you to watch your child go through a major surgery. After surgery it was tough to see him. He was on Morphine and would moan and groan and couldn't move. He would look up at us and then roll his eyes back into his head and doze off again. It's awful to see your baby in so much pain and you can't do anything about it.
The recovery room nurses were the best. They made sure Colton, Brian, and I were comfortable. They brought in a mobile to attach to his crib while we waited for a room upstairs. The mobile played classical music and Colton would calm down with it playing. The first night was the worst. His pain was not being managed well and I had to beg them to give him another dose of Morphine.
The next morning he was fine though! He pulled out his IV, drainage tube, and was jumping in his crib when the surgeon came in. Overall, the surgery was the best choice we have made for him as his parents. He's a totally different child, he's healthy, plays, and rarely do breathing treatments (he had croup and we did them for that). He rarely wheezes and is a million times better. He does have some delays from being so sick, but with therapy we're working on them.
I have a lot of guilt and feel that we should have not held him back and done the surgery months ago. The surgeon even said it should have been done months ago, but when I told him I felt so much guilt, he made me feel better and told us that we did everything we're supposed to do as parents. You never want to rush into surgery and yes, most babies outgrow it, and we explored many other options but it was at the point where being on such a high does of meds and doing other treatments weren't even controlling. I remember being at the pedi office talking to his dr and she said he'd probably have esophageal cancer by the time he was 20 from all the damage from the reflux. It's one thing for it to be controlled by meds but when it's not under control, and he was destroying his lungs, and he was in and out of the hospital and doctors offices for what they say are "life threatening conditions" you have to make that next step.
The whole point of the surgery was to make his esophagus a one-way highway so he doesn't throw up/reflux. He can't burp or throw up now and the surgeon said he never will either (only time will tell so we'll see). The reflux is almost non-existent at this point. He does have a bad day from time to time, but is doing a million times better.
His body has adjusted well to his new anatomy. He no longer burps so all that air/gas has to find a way out, so now he farts all the time.
The downside is when he gets a stomach bug or something he will retch (dry heaving) and turn red, his eyes just pop out and he looks at you with a terrifying look on his face. We're his parents and we're supposed to protect him and help him and we can't. We just look back at him and try to talk to him and calm him down. Luckily at this point he still has his g-tube in and we can drain out his stomach contents. I don't know what we'll do when he gets sick and doesn't have his g-tube. This is something we’ll have to learn to live with and deal with.
Colton is almost 15 months old and is 4 months post-op. His quality of life is so much better. Everything from the pneumoia and resp infections to the ear infections all ended up being related to reflux. He is such a happier child and it shows. He loves to be outside and play all day. He sleeps better now too. Overall, he's doing very well. He is gaining weight and eating. He is still not a great eater but he will eat, which is a huge step!! He has therapy through ECI twice a month with a dietician and an OT. They make sure he is growing and gaining weight like he should and also work with him on eating. Tomorrow Colton will start doing weekly therapy at the Feeding and Rehab Clinic and Cook Children's.
He will most likey have his g-tube for another year. He has lots of granulation tissue so we see the surgeon about once a month for him to remove it. The first round was so bad Colton had to go back for a minor out-patient surgery to remove it all. Now we use a cream a few times a week and about once a month the surgeon will use Silver Nitrate to freeze it off.
Anyway, that's our story (bits and pieces and all too long).
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