1 year and 2 days ago a little boy we met at Children's hospital got a liver, small bowel and partial pancreas transplant.
It is hard to believe that this is the same little boy that we met in August of 2006.
Here is a link to watch a great video of Christian's re-birthday party.
video.google.com/videoplay?docid=-2702633552182627672&pr=goog-sl
You can see for yourself how great he looks. That video warms my heart and makes a bit choked up every time I watch it. Congratulation's to Christian for one great year and many many more to come and to his amazing parents and their big strong hearts.
Everyone please, please become organ and tissue donor today, as your holiday gift to the many little kids in the world like Christian. If you are already a donor, thank you, thank you, thank you.
Showing posts with label Transplant. Show all posts
Showing posts with label Transplant. Show all posts
Monday, December 24, 2007
Friday, March 16, 2007
Play Time
We had another play date today. We went to Jamaica Plain to see Max and Christian. They both are doing very well.
Ellie managed to charm them both and didn't make them cry nearly as much this time. Both of these little boys are tough little troupers that have had to handle a lot for their age.
Max is the boy all the way to the right in the picture. He is 9 months old and from Bolder Colorado. Yea
You can't really tell so much from this picture but, he used to have a strong yellow tint to his skin. This is the result of high levels of bilirubin in the system due to liver damage from the TPN. As Omegaven does it's thing and his liver gets better and better the yellow color will slowly disappear.
Christian is now 3 months post transplant and is doing great. He is doing so well that they are going to send him home to
This is a picture of their play date back in February. I just love the picture so much I had to post it. Colleen aptly titled it "I don't wanna play with girls."
But I think this picture is better and I would like to title it "AW Ellie Farted!"
We have only had play dates with Christian and Max because Ellie's immune system is not as strong as a typical child's. Your intestines are one of the first defenses your body has against bugs from the outside world. If you don't have all of them then your immune system is not as strong. So, we have to be very careful of who she has contact with and let's face it, most kids are snotty messes. So we only have play dates with other children who have medical issues. Because we know that their parents will be very aware of sickness and if they say their kid is healthy, then you know they are.
We are going to miss Christian and his folks when they go home, but at the same time are very excited to see them go. It is a big step going home, Colleen, Christian's mom, has been out here taking care of Christian mostly by her self as Christian's dad works (some one has to make the money and keep the Blue Cross) back in New Jersey. It will be a nice and well deserved break for Colleen who has done an amazing job and her strength still amazes me.
Max will be here for a while because even though the Omegaven is working the doctors in Denver will not let him come home on it. Because it is so new many doctors are hesitant to let their patients use it until it is tested and approved by the FDA. This is heart breaking because of how many kids are out there with livers that are just getting worse and worse. Many doctors, even some here in Boston, are not on board but, that number is dwindling rapidly. Also some of the doctors here that are not on board with Omegaven may have made that choice due to politics, not due to the effectiveness of the drug. And that is a true shame.
Because all short gut babies should look like this.
If you are a parent of a short gut child or know some one that should be on Omegaven, please contact Dr Mark Puder at Children's Hospital in Boston. His contact information is also listed in the information at the top right side of the blog.
Saturday, February 17, 2007
Ellie's Boyfriends
Ellie got a chance to go visit her boyfriend Christian, and pick up a new one, when we had our first ever play date yesterday. We went into Jamaica Plain and visited Christian and another little boy named Max. Christian is doing great post transplant and Max is here from Denver to get on Omegaven.
It was great to see both Christian and Colleen and Christian looks like a new little boy. First thing he did was push all the toys away from Ellie and then started hitting him self in the head with a couple of other toys. Such a boy!
Ellie got even though she later tried to use Christian as a stepping stool. He didn't really like that. He didn't like that, but they did have a good time exploring the great range of toys that Christian has.
Ellie does have one major problem though. She scares all the boys away.
When she gets really excited she lets out an incredibly loud squeal. It was this squeal that made all the boys cry. I don't think Christian or Max minded having Ellie come to visit, they just wished she would have been a bit more quiet.
Max is 8 months old and has been on Omegaven for 3 weeks now. It usually takes around 30 days for Omegaven to do it's thing, so they have a bit longer to wait. He is very cute hopefully we will get to see more of them before they go home.
I hope the boys had as much fun as Ellie did, she fell asleep almost as soon as she got in the car and took a nice long nap when we got home. It was great to see Ellie interact with other kids, we may need to work on her manners for next time. She just has to remember that you play with the boys not climb on them. Maybe next time Christian can teach Ellie how to say "ball" or how to do his great monkey impression.
Monday, January 08, 2007
Livers, Old and New
Hello Abby here.
As some of you may remember a while back we wrote about a little boy that we met at Children's receiving a Liver, small bowel and partial pancreas transplant. Many of you have been asking how he is doing so here is an update.
He is doing very well. He is out of the ICU and has settled into to spend a while learning how to use a full set of intestines and healthy liver. Amazingly enough he was able to keep the 18 cm of small bowel that he had so now he has more intestine than most people. He is having normal baby poop and his parents are looking forward to being able to feed him anything he wants, even junk food.
His new liver is doing well. There were some signs of partial rejection early on, but everything seems to be getting better. His blood numbers that indicate liver health look better than they have looked in a long time.
He still has a long way to go but is definitely on the up swing from where he was, and that is great news. Life post transplant can be hard but, it is what this little boy needed. At this point his has almost fully recovered from the surgery and now his body is just struggling to learn how to use its new parts.
His parents were able to meet with the pathologist and get a look at Christian's old liver. Now this may be a bit gross for some of you out there but below is a link to a video of the liver and what the pathologist said. I find it fascinating and one of the best visual aids as to what doctors mean when they say "liver damage."
This is your liver:
This is your liver on TPN:
http://video.google.com/videoplay?docid=-2822532247311576098&pr=goog-sl
I thank Christians parents for posting the video so that we could put it on this blog. I hope that other short gut parents are able to see this video and get a better understanding of what TPN does. Christian is a very strong little boy, once again he is my proof that these kids make us adults look like wimps.
We hope and pray that by using Omegaven and not intralipid Ellie's liver will not end up looking like this. She has had two liver biopsies in the time that she was in the hospital and both times they said there was mild scarring but no inflammation. Their theory is that the scarring, since it is not getting worse, could have happened in the beginning when she wasn't on Omegaven. They also said that its appearance was normal and not green.
We also realize that Ellie was only the 23rd infant to go on Omegaven and that there has been no true testing done, so we realize that she will not be out of the woods until she is off of TPN.
As some of you may remember a while back we wrote about a little boy that we met at Children's receiving a Liver, small bowel and partial pancreas transplant. Many of you have been asking how he is doing so here is an update.
He is doing very well. He is out of the ICU and has settled into to spend a while learning how to use a full set of intestines and healthy liver. Amazingly enough he was able to keep the 18 cm of small bowel that he had so now he has more intestine than most people. He is having normal baby poop and his parents are looking forward to being able to feed him anything he wants, even junk food.
His new liver is doing well. There were some signs of partial rejection early on, but everything seems to be getting better. His blood numbers that indicate liver health look better than they have looked in a long time.
He still has a long way to go but is definitely on the up swing from where he was, and that is great news. Life post transplant can be hard but, it is what this little boy needed. At this point his has almost fully recovered from the surgery and now his body is just struggling to learn how to use its new parts.
His parents were able to meet with the pathologist and get a look at Christian's old liver. Now this may be a bit gross for some of you out there but below is a link to a video of the liver and what the pathologist said. I find it fascinating and one of the best visual aids as to what doctors mean when they say "liver damage."
This is your liver:
This is your liver on TPN:
http://video.google.com/videoplay?docid=-2822532247311576098&pr=goog-sl
I thank Christians parents for posting the video so that we could put it on this blog. I hope that other short gut parents are able to see this video and get a better understanding of what TPN does. Christian is a very strong little boy, once again he is my proof that these kids make us adults look like wimps.
We hope and pray that by using Omegaven and not intralipid Ellie's liver will not end up looking like this. She has had two liver biopsies in the time that she was in the hospital and both times they said there was mild scarring but no inflammation. Their theory is that the scarring, since it is not getting worse, could have happened in the beginning when she wasn't on Omegaven. They also said that its appearance was normal and not green.
We also realize that Ellie was only the 23rd infant to go on Omegaven and that there has been no true testing done, so we realize that she will not be out of the woods until she is off of TPN.
Friday, December 22, 2006
A minor and a major Festivus miracle
Today we got good news at home and from Children's.
At home, a minor Festivus miracle- Ellie's line worked perfectly when we too her off of her PN this morning. We were all set for a day at Children's with our bag packed for a possible extended stay but the saline flush went in, the blood came out, and we are in business. The TPA took a little bit longer than usual to work but it looks like we are good for now.
At Children's, a more significant Festivus miracle. There is a little boy that we know who got on Omegaven much later than Ellie has had the serious issues with his liver that come with the old lipid source (See August 26). The Omegaven just didn't do its miracles with him. His bilirubin is through the roof, his other organs aren't doing well and he is just plain old sick.
Yesterday they listed him in the organ donation program at Children's and just fours hours later, organs were available for his very rare blood type. A very special Festivus gift and we are hopeful that his surgery goes well this afternoon. And evening. And tomorrow morning (it takes more than 16 hours to do the transplant).
It is very tough for Abby and I to see what could have been. If we hadn't stumbled into Children's and met Dr. Puder and Kathy Gura who do the work on Omegaven. We would be in a much different situation right now and making that same decision about a transplant. Instead, because of nothing that we did other than coming to Boston, our girl is upstairs asleep in her crib doing what babies are supposed to do.
Hopefully that will be the case for our friends soon.
At home, a minor Festivus miracle- Ellie's line worked perfectly when we too her off of her PN this morning. We were all set for a day at Children's with our bag packed for a possible extended stay but the saline flush went in, the blood came out, and we are in business. The TPA took a little bit longer than usual to work but it looks like we are good for now.
At Children's, a more significant Festivus miracle. There is a little boy that we know who got on Omegaven much later than Ellie has had the serious issues with his liver that come with the old lipid source (See August 26). The Omegaven just didn't do its miracles with him. His bilirubin is through the roof, his other organs aren't doing well and he is just plain old sick.
Yesterday they listed him in the organ donation program at Children's and just fours hours later, organs were available for his very rare blood type. A very special Festivus gift and we are hopeful that his surgery goes well this afternoon. And evening. And tomorrow morning (it takes more than 16 hours to do the transplant).
It is very tough for Abby and I to see what could have been. If we hadn't stumbled into Children's and met Dr. Puder and Kathy Gura who do the work on Omegaven. We would be in a much different situation right now and making that same decision about a transplant. Instead, because of nothing that we did other than coming to Boston, our girl is upstairs asleep in her crib doing what babies are supposed to do.
Hopefully that will be the case for our friends soon.
Tuesday, May 02, 2006
Menhaden Matter, In a New Sort of Way
Right now, Eleanor is being fed with a Total Perenteral Nutrition (TPN) system. This consists of a bag of fluids that looks like Lemon-Lime Gatorade and a fat white syringe of fats that are injected into her Peripherally Inserted Central Catheter, or PICC line in her right arm. This supplies her with almost everything that she needs to grow and develop. TPN is one of theose miracles of modern medicine that wasn't around 30 years ago that saves lots of lives, both infant and adult.
One of the quirks about TPN is that when infants are on it for an extended period of time (which varies from kid to kid), there is a negative effect on the kid's liver, eventually causing cirrohsis over time and necessitating a transplant of one, two or more organs. Nobody knows why the TPN causes this damage in kids but it is an accepted fact of the feeding through TPN that once you start it, you are in a bit of a race to get the kid off of it before the liver damage happens.
Curiously, and unbeknownst to us before we came to Children's, there is a doctor on the staff who is working on the million dollar TPN mystery question and has an innovative new treatment that may better better for kids than the traditional TPN.
Traditional TPN uses soybean oil as the fat. In a curious turn of events for Abby and I who have spent our lives chasing and working with fish, the doctor here is trying using oil from menhaden, a nasty little oily fish that most people use for bait or grind up into fish meal for use in dogfood, as a substitute for the soy bean fat. It turns out that the Omega-3 oils that are in the fish oil are anti-inflammatories and may decrease the ill-effects of TPN in infants and small kids. So far the doctor has had either positive results that reduce the ill-effects or null results that have no effect either way compared with soy oil.
Abby and I spoke with the doctor yesterday and asked a million questions of him and agreed that this is the best thing for her since the name of the game in her treatment is time. We hope that fish oil wil give her the most time to teach her broken intestine to be a super intestine.
Besides, if there were ever a sign of something that we need to do, having a fish show up in a hospital just may be it.
We recieved word today that Ellie has been approved by the FDA to be a participant in this study and will begin her fish eating life with menhaden. Abby and I will continue our fish eating life tonight with a round of sushi.
No menhaden on the menu. We hope.
One of the quirks about TPN is that when infants are on it for an extended period of time (which varies from kid to kid), there is a negative effect on the kid's liver, eventually causing cirrohsis over time and necessitating a transplant of one, two or more organs. Nobody knows why the TPN causes this damage in kids but it is an accepted fact of the feeding through TPN that once you start it, you are in a bit of a race to get the kid off of it before the liver damage happens.
Curiously, and unbeknownst to us before we came to Children's, there is a doctor on the staff who is working on the million dollar TPN mystery question and has an innovative new treatment that may better better for kids than the traditional TPN.
Traditional TPN uses soybean oil as the fat. In a curious turn of events for Abby and I who have spent our lives chasing and working with fish, the doctor here is trying using oil from menhaden, a nasty little oily fish that most people use for bait or grind up into fish meal for use in dogfood, as a substitute for the soy bean fat. It turns out that the Omega-3 oils that are in the fish oil are anti-inflammatories and may decrease the ill-effects of TPN in infants and small kids. So far the doctor has had either positive results that reduce the ill-effects or null results that have no effect either way compared with soy oil.Abby and I spoke with the doctor yesterday and asked a million questions of him and agreed that this is the best thing for her since the name of the game in her treatment is time. We hope that fish oil wil give her the most time to teach her broken intestine to be a super intestine.
Besides, if there were ever a sign of something that we need to do, having a fish show up in a hospital just may be it.
We recieved word today that Ellie has been approved by the FDA to be a participant in this study and will begin her fish eating life with menhaden. Abby and I will continue our fish eating life tonight with a round of sushi.
No menhaden on the menu. We hope.
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