Major Bowel Resection

[Mommy2Zeke]

My 2 month old son ended up having to have all but 21 cm of small intestine resected due to massive thrombosis. We're in PICU again and it has been a horrible two days. They took him to emergency surgery on Friday and did an exploratory laperotomy again and then discovered the source of Zeke's huge spikes of fevers, high heart rate, and pain. Massive amounts of dead small intestine. They were able to save the Ileocecal valve but the surgeon feared it might be compromised.

Then, after we made it through the night, Zeke's belly distended another 2 cm post surgery. So the surgeon freaked out, thought the valve had necrotized and told me to expect the worst...him not making it. They did another laperotomy and discovered in fact that the ileocecal valve was fine, he just had some swelling in the abdominal cavity from so much surgery in so short a time, and they flushed the valve to make sure it worked and put a couple of drains in to let the excess fluid drain from Zeke's belly.

We're hoping and praying the valve stays healthy...otherwise we're looking at death or intestinal transplant according to the surgeon- and Zeke might not make it through the waiting list of approximately 265 days without the valve.

Do any of you have experience with short gut syndrome and if so, how much intestine do you or your little one have? Have any of you been through intestinal transplant?

 

[Mommy2Zeke]

My 2 month old son ended up having to have all but 21 cm of small intestine resected due to massive thrombosis. We're in PICU again and it has been a horrible two days. They took him to emergency surgery on Friday and did an exploratory laperotomy again and then discovered the source of Zeke's huge spikes of fevers, high heart rate, and pain. Massive amounts of dead small intestine. They were able to save the Ileocecal valve but the surgeon feared it might be compromised.

Then, after we made it through the night, Zeke's belly distended another 2 cm post surgery. So the surgeon freaked out, thought the valve had necrotized and told me to expect the worst...him not making it. They did another laperotomy and discovered in fact that the ileocecal valve was fine, he just had some swelling in the abdominal cavity from so much surgery in so short a time, and they flushed the valve to make sure it worked and put a couple of drains in to let the excess fluid drain from Zeke's belly.

We're hoping and praying the valve stays healthy...otherwise we're looking at death or intestinal transplant according to the surgeon- and Zeke might not make it through the waiting list of approximately 265 days without the valve.

Do any of you have experience with short gut syndrome and if so, how much intestine do you or your little one have? Have any of you been through intestinal transplant?

 

[Mommy2Zeke]

My 2 month old son ended up having to have all but 21 cm of small intestine resected due to massive thrombosis. We're in PICU again and it has been a horrible two days. They took him to emergency surgery on Friday and did an exploratory laperotomy again and then discovered the source of Zeke's huge spikes of fevers, high heart rate, and pain. Massive amounts of dead small intestine. They were able to save the Ileocecal valve but the surgeon feared it might be compromised.

Then, after we made it through the night, Zeke's belly distended another 2 cm post surgery. So the surgeon freaked out, thought the valve had necrotized and told me to expect the worst...him not making it. They did another laperotomy and discovered in fact that the ileocecal valve was fine, he just had some swelling in the abdominal cavity from so much surgery in so short a time, and they flushed the valve to make sure it worked and put a couple of drains in to let the excess fluid drain from Zeke's belly.

We're hoping and praying the valve stays healthy...otherwise we're looking at death or intestinal transplant according to the surgeon- and Zeke might not make it through the waiting list of approximately 265 days without the valve.

Do any of you have experience with short gut syndrome and if so, how much intestine do you or your little one have? Have any of you been through intestinal transplant?

 

[Mommy2Zeke]

My 2 month old son ended up having to have all but 21 cm of small intestine resected due to massive thrombosis. We're in PICU again and it has been a horrible two days. They took him to emergency surgery on Friday and did an exploratory laperotomy again and then discovered the source of Zeke's huge spikes of fevers, high heart rate, and pain. Massive amounts of dead small intestine. They were able to save the Ileocecal valve but the surgeon feared it might be compromised.

Then, after we made it through the night, Zeke's belly distended another 2 cm post surgery. So the surgeon freaked out, thought the valve had necrotized and told me to expect the worst...him not making it. They did another laperotomy and discovered in fact that the ileocecal valve was fine, he just had some swelling in the abdominal cavity from so much surgery in so short a time, and they flushed the valve to make sure it worked and put a couple of drains in to let the excess fluid drain from Zeke's belly.

We're hoping and praying the valve stays healthy...otherwise we're looking at death or intestinal transplant according to the surgeon- and Zeke might not make it through the waiting list of approximately 265 days without the valve.

Do any of you have experience with short gut syndrome and if so, how much intestine do you or your little one have? Have any of you been through intestinal transplant?

 

[Mommy2Zeke]

My 2 month old son ended up having to have all but 21 cm of small intestine resected due to massive thrombosis. We're in PICU again and it has been a horrible two days. They took him to emergency surgery on Friday and did an exploratory laperotomy again and then discovered the source of Zeke's huge spikes of fevers, high heart rate, and pain. Massive amounts of dead small intestine. They were able to save the Ileocecal valve but the surgeon feared it might be compromised.
<br />
<br />Then, after we made it through the night, Zeke's belly distended another 2 cm post surgery. So the surgeon freaked out, thought the valve had necrotized and told me to expect the worst...him not making it. They did another laperotomy and discovered in fact that the ileocecal valve was fine, he just had some swelling in the abdominal cavity from so much surgery in so short a time, and they flushed the valve to make sure it worked and put a couple of drains in to let the excess fluid drain from Zeke's belly.
<br />
<br />We're hoping and praying the valve stays healthy...otherwise we're looking at death or intestinal transplant according to the surgeon- and Zeke might not make it through the waiting list of approximately 265 days without the valve.
<br />
<br />Do any of you have experience with short gut syndrome and if so, how much intestine do you or your little one have? Have any of you been through intestinal transplant?
<br />
<br />

 

[JazzysMom]

OH Jen! It sounds like you guys are having a really rough time. I dont have a lot of experience with what you are dealing with.

I hope someone else has something to offer you. We have 2 members who are a bit farther along in their venture with CF, but their CFer has a short gut issue.

There names are tcole (the CFers mom)& NanaOf8GirlsAndCounting (grandma)......maybe researching some of their threads or contacting them through PM's might help.

In the meantime my thoughts & prayers are with you & your little one!

HUGS

 

[JazzysMom]

OH Jen! It sounds like you guys are having a really rough time. I dont have a lot of experience with what you are dealing with.

I hope someone else has something to offer you. We have 2 members who are a bit farther along in their venture with CF, but their CFer has a short gut issue.

There names are tcole (the CFers mom)& NanaOf8GirlsAndCounting (grandma)......maybe researching some of their threads or contacting them through PM's might help.

In the meantime my thoughts & prayers are with you & your little one!

HUGS

 

[JazzysMom]

OH Jen! It sounds like you guys are having a really rough time. I dont have a lot of experience with what you are dealing with.

I hope someone else has something to offer you. We have 2 members who are a bit farther along in their venture with CF, but their CFer has a short gut issue.

There names are tcole (the CFers mom)& NanaOf8GirlsAndCounting (grandma)......maybe researching some of their threads or contacting them through PM's might help.

In the meantime my thoughts & prayers are with you & your little one!

HUGS

 

[JazzysMom]

OH Jen! It sounds like you guys are having a really rough time. I dont have a lot of experience with what you are dealing with.

I hope someone else has something to offer you. We have 2 members who are a bit farther along in their venture with CF, but their CFer has a short gut issue.

There names are tcole (the CFers mom)& NanaOf8GirlsAndCounting (grandma)......maybe researching some of their threads or contacting them through PM's might help.

In the meantime my thoughts & prayers are with you & your little one!

HUGS

 

[JazzysMom]

OH Jen! It sounds like you guys are having a really rough time. I dont have a lot of experience with what you are dealing with.
<br />
<br />I hope someone else has something to offer you. We have 2 members who are a bit farther along in their venture with CF, but their CFer has a short gut issue.
<br />
<br />There names are tcole (the CFers mom)& NanaOf8GirlsAndCounting (grandma)......maybe researching some of their threads or contacting them through PM's might help.
<br />
<br />In the meantime my thoughts & prayers are with you & your little one!
<br />
<br />HUGS

 

[Rebjane]

Jen,

I wanted you to know I'm keeping your baby in my thoughts and wishing for the best possible outcome for your baby. Have you gotten any second opinions surgeons? Stay strong.

 

[Rebjane]

Jen,

I wanted you to know I'm keeping your baby in my thoughts and wishing for the best possible outcome for your baby. Have you gotten any second opinions surgeons? Stay strong.

 

[Rebjane]

Jen,

I wanted you to know I'm keeping your baby in my thoughts and wishing for the best possible outcome for your baby. Have you gotten any second opinions surgeons? Stay strong.

 

[Rebjane]

Jen,

I wanted you to know I'm keeping your baby in my thoughts and wishing for the best possible outcome for your baby. Have you gotten any second opinions surgeons? Stay strong.

 

[Rebjane]

Jen,

I wanted you to know I'm keeping your baby in my thoughts and wishing for the best possible outcome for your baby. Have you gotten any second opinions surgeons? Stay strong.

 

[Mommafirst]

Oh wow -- poor little guy. You must be a mess, I'm so sorry you are dealing with all of this. I have no information to offer, just support -- listening to your story and letting you know that good thoughts are being sent from all over the country. (((HUGS)))

 

[Mommafirst]

Oh wow -- poor little guy. You must be a mess, I'm so sorry you are dealing with all of this. I have no information to offer, just support -- listening to your story and letting you know that good thoughts are being sent from all over the country. (((HUGS)))

 

[Mommafirst]

Oh wow -- poor little guy. You must be a mess, I'm so sorry you are dealing with all of this. I have no information to offer, just support -- listening to your story and letting you know that good thoughts are being sent from all over the country. (((HUGS)))

 

[Mommafirst]

Oh wow -- poor little guy. You must be a mess, I'm so sorry you are dealing with all of this. I have no information to offer, just support -- listening to your story and letting you know that good thoughts are being sent from all over the country. (((HUGS)))

 

[Mommafirst]

Oh wow -- poor little guy. You must be a mess, I'm so sorry you are dealing with all of this. I have no information to offer, just support -- listening to your story and letting you know that good thoughts are being sent from all over the country. (((HUGS)))