I had a stomachache one day and I was complaining about it. I asked Seamus "How do you do this all the time? Does your stomach hurt everyday?"
"Yes"
"I'm sorry, baby"
"It's okay, Mommy"
But you know what, it's not okay.
It's not okay that just the thought of pooping can make him cry.
It's not okay that we're no longer surprised when he jumps up in the middle of dinner to go throw up and then comes back and finishes his meal like nothing happened.
It's not okay that some days he is so gassy and distended that he can't tolerate shaking in his vest because it hurts too much.
It's not okay that every day a four year old boy has to be tied to his feeding pump for 2 hours getting Miralax pumped through him in order to poop, along with Mucomist to make it less sticky, Erythmycin to improve motility, Prevacid for reflux, probiotics for bacterial overgrowth, swallowed Flovent for eosinophilic esphogitis, and Pentasa for colitis.
It's not okay that he gets humiliated when he has accidents, which are no fault of his own, because of all the medicine he gets pumped through his system.
It's definitely not okay that even with all the daily meds, he still gets blocked up and now needs a weekly heavy-duty four hour clean-out with Go-lytely which means every Sunday we can't leave the house because you never know when it will go into effect.
There is just nothing that's okay about what he has to go through.
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He had CF clinic on Friday. Our regular doc, Dr P, is on maternity leave so Dr Preston Campbell, the medical director of the Cystic Fibrosis Foundation was filling in. He was really good with Seamus and talked with us for a long time about Seamus' GI issues. He told us he has never seen any other CF patient with such extreme GI issues. That was a shock because he has seen thousands of patients. At first, I thought, "Okay, we're not crazy. This is really serious" but then I thought "Oh shit, we're not crazy. This is really serious."
He didn't really like it that so far, the treatment has basically been just to keep increasing Seamus' meds and when that doesn't work, admit him for a longer clean-out than we can do at home. He didn't really have anything new to offer that could help Seamus currently but he does feel that there is hope. Some of the new drugs being developed work specifically on Seamus' type of gene mutation. There is also a new enzyme which should be approved soon that is the first one not made from pigs. Since Seamus' most severe food allergy is to pork, that's good news for him.
Showing posts with label GI. Show all posts
Showing posts with label GI. Show all posts
Monday, July 12, 2010
Friday, January 8, 2010
Quick update
We did the clean-out on Wednesday which helped a little but his tummy still hurt and he wasn't pooping much. Dr C said he needed an x-ray which we got yesterday afternoon and surprise, surprise, he is still full of poop. He wants us to do another 4 hour clean-out today. I feel like we're spinning our wheels.
Wednesday, January 6, 2010
Clean out
A few days ago, I had a stomachache and I asked Seamus what he does to feel better when his tummy hurts. He patted his tummy and said "I do this". Over the next couple days, I noticed he pats his tummy an awful lot. When I asked him if it hurts, he told me "Mommy, it hurts everyday". We've repeatedly told the doctor who doesn't have much else to say but now that his pooping has definitely decreased too, he wanted us to start a clean out.
We started a home clean out with Golytely this morning but the amount we can do at home safely usually barely scratches the surface for Seamus. It's just a prerequesite so when we get to the ER and they tell us to go home and give him Golytely we can say we already did, now admit him.
We'll see what happens.
We started a home clean out with Golytely this morning but the amount we can do at home safely usually barely scratches the surface for Seamus. It's just a prerequesite so when we get to the ER and they tell us to go home and give him Golytely we can say we already did, now admit him.
We'll see what happens.
Wednesday, December 30, 2009
I'm back
I'm just going to pretend it hasn't been two months since I last posted and start the New Year off right.
Our holidays were very nice. We went down to North Carolina and saw lots of people. We saw my brother and his family who we haven't seen in more than a year. Seamus adores his cousins, Alex and Cassidy. We celebrated Christmas and Alex's birthday the week before actual Christmas day. We spent some time with James' sister Carol too whom we hadn't seen in a long time.
We visited with our old friends Trish and Joe and their kids. They are much older than Seamus but are they were so nice to play with him for hours. At the end of the day, he send "Mommy, this is a great play date!"
Santa was nice to Seamus. The big present was Pluto (guess who named him?), our new doggie. He's the sweetest thing but he came with a long list of unexpected ailments: heartworms, kennel cough, vomiting, and enlarged prostate. We're working on getting him better.
Uncle Rick came to help us celebrate New Years. Seamus always loves to see him. We spent New Years Eve playing the Dr Seuss ABC Stretching Game, which is like Twister for little folks, even though most of us are not so little. And of course, we made hats which is the tradition in our house for any special occasion.
Seamus' newest obsession is Shrek. He asked for Shrek toys for Christmas but Santa had a very hard time finding any so instead he got the first two Shrek movies. We've discovered Seamus is a very good impersonator. He does a mean Shrek walking around the house saying "dawn-kay" and you've never heard anything as cute as "Jingle Bells" in a little Scottish accent.
Our newest hobby is drawing and cutting out all kinds of paper "dudes". We've made hundreds, everyone from Santa to Buzz Lightyear to all the kids in his class. There is a whole sub-genre of super heroes like Super Sponge Bob, Party Man (whose super power is throwing great parties), and even Super Pillsbury Dough Boy. Today, we made Dancing Man, whose ability is to change bad guys into dancers and Bow Bear who is a bear but can change into a bee and turns bad guys into logs when she stings them.
Reading is going really well. He's picking up lots of words and is starting working on writing his letters. We still do words-of-the-day and his vocabulary is pretty impressive, if I say so myself. We were playing a game the other day that I found frustrating and I said "This is maddening". Later that night he was getting annoyed with something and told me it was "bald on the head, that means frustrating Mommy."
He started taking a tap/ballet class. He's the only boy with 14 girls but he doesn't seem to mind. Some days I can tell it takes a lot out of him but he has fun.
His health has been relatively good. We've been really lucky respiratory-wise, no bad colds to speak of but he's gone back and forth a lot to the GI doc and had another scope. Even though he's in pain, they couldn't find anything new so he's still on the same regimen. Everyday it's a struggle with pooping and we know it can't go on like this. It shouldn't have to always hurt and you can't imagine how hard it is to have nothing comforting to say when he says "It hurts Mommy."
I have lots of pictures which I'll update soon, I promise.
Our holidays were very nice. We went down to North Carolina and saw lots of people. We saw my brother and his family who we haven't seen in more than a year. Seamus adores his cousins, Alex and Cassidy. We celebrated Christmas and Alex's birthday the week before actual Christmas day. We spent some time with James' sister Carol too whom we hadn't seen in a long time.
We visited with our old friends Trish and Joe and their kids. They are much older than Seamus but are they were so nice to play with him for hours. At the end of the day, he send "Mommy, this is a great play date!"
Santa was nice to Seamus. The big present was Pluto (guess who named him?), our new doggie. He's the sweetest thing but he came with a long list of unexpected ailments: heartworms, kennel cough, vomiting, and enlarged prostate. We're working on getting him better.
Uncle Rick came to help us celebrate New Years. Seamus always loves to see him. We spent New Years Eve playing the Dr Seuss ABC Stretching Game, which is like Twister for little folks, even though most of us are not so little. And of course, we made hats which is the tradition in our house for any special occasion.
Seamus' newest obsession is Shrek. He asked for Shrek toys for Christmas but Santa had a very hard time finding any so instead he got the first two Shrek movies. We've discovered Seamus is a very good impersonator. He does a mean Shrek walking around the house saying "dawn-kay" and you've never heard anything as cute as "Jingle Bells" in a little Scottish accent.
Our newest hobby is drawing and cutting out all kinds of paper "dudes". We've made hundreds, everyone from Santa to Buzz Lightyear to all the kids in his class. There is a whole sub-genre of super heroes like Super Sponge Bob, Party Man (whose super power is throwing great parties), and even Super Pillsbury Dough Boy. Today, we made Dancing Man, whose ability is to change bad guys into dancers and Bow Bear who is a bear but can change into a bee and turns bad guys into logs when she stings them.
Reading is going really well. He's picking up lots of words and is starting working on writing his letters. We still do words-of-the-day and his vocabulary is pretty impressive, if I say so myself. We were playing a game the other day that I found frustrating and I said "This is maddening". Later that night he was getting annoyed with something and told me it was "bald on the head, that means frustrating Mommy."
He started taking a tap/ballet class. He's the only boy with 14 girls but he doesn't seem to mind. Some days I can tell it takes a lot out of him but he has fun.
His health has been relatively good. We've been really lucky respiratory-wise, no bad colds to speak of but he's gone back and forth a lot to the GI doc and had another scope. Even though he's in pain, they couldn't find anything new so he's still on the same regimen. Everyday it's a struggle with pooping and we know it can't go on like this. It shouldn't have to always hurt and you can't imagine how hard it is to have nothing comforting to say when he says "It hurts Mommy."
I have lots of pictures which I'll update soon, I promise.
Thursday, October 15, 2009
Long time
Well, I've let it go too long again.
Seamus had a nice birthday party, even though it got rained out. Somehow we crammed 16 little kids with parents and siblings into our house and still had a good time. It was Spiderman themed so he had a Spiderman decorations, Spiderman Pinata, Pin the Sticker on the Spiderman Game, and of course a yummy Spiderman cake made by his Aunt Meghan. The kids all made super hero masks and had to pick out a super hero name for themselves. Seamus was "Doggie Man."
My birthday was the next week and we had a nice weekend again. Seamus has become obsessed with Toy Story so we went to the 3-D double feature of Toy Story Parts 1 and 2. In that last few months, I've seen both those movies at least 20 times each so having to sit through a marathon was pretty rough, but Seamus loved it. We came home and the first thing he wanted to do was watch Part 2 again. He got Woody and Buzz dolls for his birthday, and he is truly never without them.
He had a pretty rough week after that, GI-wise. He had about 2 good weeks after his hospitalization before the same old symptoms came back. He had x-rays last Friday which showed lots of gas but supposedly not too much stool. Since he's complaining about pain again (it hurts like wood again, no more soft pillows), his doc put him back on the suppositories. It it the worst torture for him but he knows they help. Even while he's sobbing when we do it, he says through the tears "that's better, that's better." He is still not eating or pooping much and his stoma around his feeding tube is leaking which I don't think could be related to rectal ulcers so I think we'll be returning to the doc soon.
I meant to write this story down weeks ago so I wouldn't forget it. For a few days in a row, I could not get the theme song from "The Imagination Movers" out of my head. It was making me crazy. Seamus was trying to help me and said "Why don't you draw a picture of the song so then it will get out of your head and onto the paper?" I thought that was a pretty clever idea.
Seamus had a nice birthday party, even though it got rained out. Somehow we crammed 16 little kids with parents and siblings into our house and still had a good time. It was Spiderman themed so he had a Spiderman decorations, Spiderman Pinata, Pin the Sticker on the Spiderman Game, and of course a yummy Spiderman cake made by his Aunt Meghan. The kids all made super hero masks and had to pick out a super hero name for themselves. Seamus was "Doggie Man."
My birthday was the next week and we had a nice weekend again. Seamus has become obsessed with Toy Story so we went to the 3-D double feature of Toy Story Parts 1 and 2. In that last few months, I've seen both those movies at least 20 times each so having to sit through a marathon was pretty rough, but Seamus loved it. We came home and the first thing he wanted to do was watch Part 2 again. He got Woody and Buzz dolls for his birthday, and he is truly never without them.
He had a pretty rough week after that, GI-wise. He had about 2 good weeks after his hospitalization before the same old symptoms came back. He had x-rays last Friday which showed lots of gas but supposedly not too much stool. Since he's complaining about pain again (it hurts like wood again, no more soft pillows), his doc put him back on the suppositories. It it the worst torture for him but he knows they help. Even while he's sobbing when we do it, he says through the tears "that's better, that's better." He is still not eating or pooping much and his stoma around his feeding tube is leaking which I don't think could be related to rectal ulcers so I think we'll be returning to the doc soon.
I meant to write this story down weeks ago so I wouldn't forget it. For a few days in a row, I could not get the theme song from "The Imagination Movers" out of my head. It was making me crazy. Seamus was trying to help me and said "Why don't you draw a picture of the song so then it will get out of your head and onto the paper?" I thought that was a pretty clever idea.
Tuesday, September 8, 2009
Home Again
Seamus was discharged on Saturday afternoon with a PICC line to finish the antibiotics for his pneumonia and a treatment plan for the GI issues, which still seems a little uncertain.
They were shocked that in less than 24 hours between the colonoscopy, when he was clear, and the CT scan, he had gotten all blocked up again. He has colitis, which is inflammation of his intestinal tract, that is making his constipation worse, and then the constipation is causing more inflammation. It's like the chicken and the egg. They are treating the colitis with anti-inflammatory drugs but so far, he is still in pain and not pooping very much. We also have to give him a steroid suppository every day for the rectal ulcers which is pure torture for him. It breaks my heart to hear him beg us each day not to do it. Finally, he has H. Pylori, which causes peptic ulcers, but he has it in his intestines. The treatment is pretty heavy duty so they want to wait until the pneumonia treatment is done. So basically, the pneumonia is the only thing that is really under control.
Tomorrow, Seamus starts pre-school again. It's only a couple hours a day, 3 days a week so we are hoping he can handle it. He's really looking forward to it and we would hate to have to pull him out.
Here are some pictures of our latest vacation in Williamsburg and VA Beach. I'm so glad we could fit it in before he went into the hospital.
They were shocked that in less than 24 hours between the colonoscopy, when he was clear, and the CT scan, he had gotten all blocked up again. He has colitis, which is inflammation of his intestinal tract, that is making his constipation worse, and then the constipation is causing more inflammation. It's like the chicken and the egg. They are treating the colitis with anti-inflammatory drugs but so far, he is still in pain and not pooping very much. We also have to give him a steroid suppository every day for the rectal ulcers which is pure torture for him. It breaks my heart to hear him beg us each day not to do it. Finally, he has H. Pylori, which causes peptic ulcers, but he has it in his intestines. The treatment is pretty heavy duty so they want to wait until the pneumonia treatment is done. So basically, the pneumonia is the only thing that is really under control.
Tomorrow, Seamus starts pre-school again. It's only a couple hours a day, 3 days a week so we are hoping he can handle it. He's really looking forward to it and we would hate to have to pull him out.
Here are some pictures of our latest vacation in Williamsburg and VA Beach. I'm so glad we could fit it in before he went into the hospital.
Wednesday, August 19, 2009
ER visit again
Seamus had a fever of 100-103 degrees from Wednesday until Sunday. He also was having major GI problems. After two weeks of uncontrollable diarrhea, he was constipated and in much pain. He started complaining about food being stuck in his throat and gagging and vomiting when he ate. On Saturday, we went into the pediatrician who declared he had no respitory issues but took a white blood cell count because of the fevers. He had a count to 20,000 which is extrememly high. So off to the ER we went.
They did the regular battery of tests, x-rays, etc. They couldn't find anything that would cause the fever and sent us home.
Since then, he's finished a round of the antibiotics he was put on for the intestinal bacterial overgrowth and his world is getting back to normal. I'm not a doctor but my diagnosis is the antibiotics caused all kinds of upset in his GI tract, which is a common side effect. This in turn caused his eosiniphilic esophagitis to kick into high gear causing the gagging and vomiting. Eosiniphils are white blood cells so it makes sense his count would go through the roof and increased white blood cells cause fever.
He is still vomiting occasionally but I think his EE is finally starting to calm down and his pooping is getting back to "normal", or at least his normal. It's a good thing because we are planning on going away this weekend to celebrate James' birthday and usually our travel plans are thwarted by some medical emergency.
Seamus is getting back to his feisty three old self. On the one hand, that's great, but they're not kidding that now the terrible twos have become the terrible threes. I guess I can't complain too much, at least he's not sick anymore.
They did the regular battery of tests, x-rays, etc. They couldn't find anything that would cause the fever and sent us home.
Since then, he's finished a round of the antibiotics he was put on for the intestinal bacterial overgrowth and his world is getting back to normal. I'm not a doctor but my diagnosis is the antibiotics caused all kinds of upset in his GI tract, which is a common side effect. This in turn caused his eosiniphilic esophagitis to kick into high gear causing the gagging and vomiting. Eosiniphils are white blood cells so it makes sense his count would go through the roof and increased white blood cells cause fever.
He is still vomiting occasionally but I think his EE is finally starting to calm down and his pooping is getting back to "normal", or at least his normal. It's a good thing because we are planning on going away this weekend to celebrate James' birthday and usually our travel plans are thwarted by some medical emergency.
Seamus is getting back to his feisty three old self. On the one hand, that's great, but they're not kidding that now the terrible twos have become the terrible threes. I guess I can't complain too much, at least he's not sick anymore.
Monday, July 27, 2009
Not much to report
I've been very bad at updating lately. There hasn't been a lot to say. Seamus seems to be feeling better but still not 100%. We went back to the GI doc on Friday and the latest news is he has SIBO, Small Intestinal Bacteria Overgrowth. It's caused by malabsorbtion and slow gastric emptying. It basically causes a lot of gas, discomfort and stomach distention. He's started on two different antibiotics which he'll cycle through indefinitely, hoping he doesn't get resistant to either.
All of this is starting to affect him more than just physically. At the doctor's office, James and Seamus were reading a book about pooping on the potty. Half way through Seamus asked him to stop and told James it makes him sad he can't poop like other kids. And last weekend, when we asked him to go to the pool, he kept crying and saying he didn't want to go. Later he told me, "I want to go to the pool, but I just don't feel like it."
We have had some fun times in between the down times. We stumbled across a really cute little Mom and Pop amusement park, Adventure Park USA, a week ago. We were on our way to somewhere else but that looked more fun, so we stopped. It's in the style of an old Western town. Seamus has been calling it the Cowboy Town.
Seamus and James went to the Baltimore Zoo last week. Seamus was very enamored with the chimpanzees and baby elephant and told me all about it as we snuggled in bed that night. He also felt up to two playdates and a birthday party this weekend so that was a great improvement.
Seamus still amazes me and everyone who meets him everyday. No matter what he goes through, he's always ready with hugs and kisses. I'm so proud of him.
All of this is starting to affect him more than just physically. At the doctor's office, James and Seamus were reading a book about pooping on the potty. Half way through Seamus asked him to stop and told James it makes him sad he can't poop like other kids. And last weekend, when we asked him to go to the pool, he kept crying and saying he didn't want to go. Later he told me, "I want to go to the pool, but I just don't feel like it."
We have had some fun times in between the down times. We stumbled across a really cute little Mom and Pop amusement park, Adventure Park USA, a week ago. We were on our way to somewhere else but that looked more fun, so we stopped. It's in the style of an old Western town. Seamus has been calling it the Cowboy Town.
Seamus and James went to the Baltimore Zoo last week. Seamus was very enamored with the chimpanzees and baby elephant and told me all about it as we snuggled in bed that night. He also felt up to two playdates and a birthday party this weekend so that was a great improvement.
Seamus still amazes me and everyone who meets him everyday. No matter what he goes through, he's always ready with hugs and kisses. I'm so proud of him.
Wednesday, July 8, 2009
Day 4
It's day 4 of the hospital stay and he's still pooping. They plan on doing another x-ray this morning to look at the progress. Yesterday, he passed what looked like gobs of rubber cement. I think that had to be good to get that out.
Seamus has been doing well, considering everything he's going through. To top it off, he now has conjunctivitis in both eyes and the right one is almost swollen shut. The poor guy. Because they've pumped 10 liters of Go-lytely into him so far, he's swollen up like a balloon. Between that and his eyes, he looks like a washed up prizefighter.
I wasn't kidding about Toy Story. He's watched Parts 1 and 2 at least 5 times each so far. It makes him happy so I don't complain. He did watch Snow White once too and I've never seen him laugh so hard. Last night before he fell asleep, he was lying in bed in the dark giggling and talking about Dopey falling down.
Hopefully, my next post will be from the comfort of home.
Seamus has been doing well, considering everything he's going through. To top it off, he now has conjunctivitis in both eyes and the right one is almost swollen shut. The poor guy. Because they've pumped 10 liters of Go-lytely into him so far, he's swollen up like a balloon. Between that and his eyes, he looks like a washed up prizefighter.
I wasn't kidding about Toy Story. He's watched Parts 1 and 2 at least 5 times each so far. It makes him happy so I don't complain. He did watch Snow White once too and I've never seen him laugh so hard. Last night before he fell asleep, he was lying in bed in the dark giggling and talking about Dopey falling down.
Hopefully, my next post will be from the comfort of home.
Monday, July 6, 2009
Update from the hospital
Well, it finally caught up with him. All these months of home clean outs that never fully cleaned him out has left Seamus almost totally blocked and back in the hospital. It never fails, every July he ends up in the hospital. For those who don't frequent hospitals, that is the worst month to be in one. All the new doctors start and there is lots of confusion. Last year, we had a nightmare hospitalization but this year, it's been okay so far.
At first, we got quite a scare because when I called Seamus' GI doc and he heard Seamus sobbing in the background, he said "That is not the Seamus I know. Get to the closest hospital and get an x-ray now." When they looked at the x-ray, we were told he had a full obstruction and needed surgery but that hospital didn't have a peds surgeon so we were going to be transferred to Hopkins, which is our normal hospital. They wanted us to go in an ambulance because if he "coded out", they could help him. That was pretty hard to hear but after waiting 4 hours for them to come, we decided we'd risk it and drive the 40 minute drive ourselves.
When they looked at the x-ray here, they said it wasn't completely blocked and no surgery was needed. This has happened to us on numerous occasions. I really think they need to have better classes on reading x-rays in medical school because no one seems to agree on what they are looking at. Seamus was put on the full blown Go-lytely treatment to break it up. He's doing well, just hanging out watching Toy Story over and over and over, pooping, lots of pooping and charming all the nurses.
Prior to all this, we had a nice holiday weekend. On Friday, we went to the University Town Center for a picnic lunch and Seamus ran through the fountains with lots of new friends. Then we came home and made brownies topped with bright blue frosting, four kinds of sprinkles and jellybeans to get ready for Uncle Rick's visit.
Seamus and Uncle Rick spent lots of time playing football, tennis, the Wii ... I think Uncle Rick had a hard time keeping up. On Saturday, we started at our town's Fourth of July celebration and then headed over to our pool. It would have been a really nice day if Seamus hadn't woken up at 11:00 PM crying in pain, begging us to turn off his feeding tube.
Hopefully, we won't be here too much longer but Seamus has said he will not go home until we get the Toy Story DVD.
Thursday, June 25, 2009
Los Angeles Trip
We had a great time although you knew we wouldn't get through this trip without a visit to the ER (more on that later).
Seamus seemed to be doing better a few days leading up to the trip but as we were waiting to board the plane in Baltimore, he vomited all over the Food Court. So we quickly got him changed and onto the plane where things went very smoothly. He loves to fly and was such a good boy during the 7 hour trip. After landing in LA and getting our rental car, we weren't on the road more than 10 minutes when he vomited again, huge amounts all over the car and rented car seat. We thought we were in serious trouble then.
We took it easy that night and got ready to go to Disney the next morning. During breakfast in our very nice hotel room, Seamus let loose with the puking again. He said he felt good so we continued with our plans. Disney ended up being great. The weather was a little cloudy and low 70's which kept local people away but was great for us. We didn't stand in line more than 15 minutes for any ride and Seamus got to meet and hug almost all the Disney gang: Mickey, Minnie, Goofy, Winnie, Tigger, and Chip N Dale. He was thrilled but still talks about how we missed Donald.
That night we headed up to LA where my conference was. We were all exhausted from jet lag and all day at Disney so we just wanted to go to bed. Ha ha, not in the plans. James got us each a bottle of beer for dinner and then realized we didn't have a bottle opener. He decided to use his car keys and ended up slicing his finger open across the base of his finger nail. The blood did not stop gushing so we called the hotel doc who thought he might have sliced his artery. We had to go to the ER immediately. By now, it was 8:30, or 11:30 by our internal clocks, and Seamus still hadn't eaten dinner. We all packed up and went to the ER. It ended up okay, not the artery but James needed stitches and 14 shots in his pinkie finger so they could tear his nail off. Yuck! After leaving there and getting his prescription filled, it was midnight, or 3 AM to us.
The rest of the trip was a little less stressful. We went Venice Beach and the Santa Monica Pier, spent time with some long lost friends and James and Seamus hit Griffith Park and the Zoo. It was fun but I'm glad to be home.
Here are some pix of our great time:
Seamus seemed to be doing better a few days leading up to the trip but as we were waiting to board the plane in Baltimore, he vomited all over the Food Court. So we quickly got him changed and onto the plane where things went very smoothly. He loves to fly and was such a good boy during the 7 hour trip. After landing in LA and getting our rental car, we weren't on the road more than 10 minutes when he vomited again, huge amounts all over the car and rented car seat. We thought we were in serious trouble then.
We took it easy that night and got ready to go to Disney the next morning. During breakfast in our very nice hotel room, Seamus let loose with the puking again. He said he felt good so we continued with our plans. Disney ended up being great. The weather was a little cloudy and low 70's which kept local people away but was great for us. We didn't stand in line more than 15 minutes for any ride and Seamus got to meet and hug almost all the Disney gang: Mickey, Minnie, Goofy, Winnie, Tigger, and Chip N Dale. He was thrilled but still talks about how we missed Donald.
That night we headed up to LA where my conference was. We were all exhausted from jet lag and all day at Disney so we just wanted to go to bed. Ha ha, not in the plans. James got us each a bottle of beer for dinner and then realized we didn't have a bottle opener. He decided to use his car keys and ended up slicing his finger open across the base of his finger nail. The blood did not stop gushing so we called the hotel doc who thought he might have sliced his artery. We had to go to the ER immediately. By now, it was 8:30, or 11:30 by our internal clocks, and Seamus still hadn't eaten dinner. We all packed up and went to the ER. It ended up okay, not the artery but James needed stitches and 14 shots in his pinkie finger so they could tear his nail off. Yuck! After leaving there and getting his prescription filled, it was midnight, or 3 AM to us.
The rest of the trip was a little less stressful. We went Venice Beach and the Santa Monica Pier, spent time with some long lost friends and James and Seamus hit Griffith Park and the Zoo. It was fun but I'm glad to be home.
Here are some pix of our great time:
Monday, June 15, 2009
We had a nice weekend. Seamus went to two birthday pool parties and had a great time. He's also getting excited about our upcoming trip to Los Angeles and Disneyland this weekend.
The change in his feedings is still not going well. He has not slept through the night once since we've made the change and his appetite has severely decreased, I think partly because his stomach hurts and partly because he's full from the extra tube feeds. His stomach has been distended and gassy because he's not getting enough enzymes at night and yesterday he had a huge watery accident right in the middle of family room which embarrassed him terribly. He almost started crying and said "This can't happen at Lilly's birthday party!" He actually asked to wear a diaper which he hasn't done in the daytime for months.
I'm a little worried because every time we plan a trip, something seems to happen. We have lost hundreds of dollars in canceled plane tickets and hotel rooms. I'm keeping my fingers crossed and we're still tweaking the regimen. Hopefully by Friday, he'll be doing better.
Next post, I promise, no more poop talk!
The change in his feedings is still not going well. He has not slept through the night once since we've made the change and his appetite has severely decreased, I think partly because his stomach hurts and partly because he's full from the extra tube feeds. His stomach has been distended and gassy because he's not getting enough enzymes at night and yesterday he had a huge watery accident right in the middle of family room which embarrassed him terribly. He almost started crying and said "This can't happen at Lilly's birthday party!" He actually asked to wear a diaper which he hasn't done in the daytime for months.
I'm a little worried because every time we plan a trip, something seems to happen. We have lost hundreds of dollars in canceled plane tickets and hotel rooms. I'm keeping my fingers crossed and we're still tweaking the regimen. Hopefully by Friday, he'll be doing better.
Next post, I promise, no more poop talk!
Wednesday, June 10, 2009
Unexpected
Yesterday, Seamus went to the GI doc to have his tube looked at. It is infected so they took a swab to culture. But the big shock was his weight has gone down again. The last time he was weighed at GI clinic was 6 months ago and he's back to the same weight. Considering he already has a feeding tube, it seriously concerned Dr. C.
He gave me the serious talk about how his weight will affect his lifespan and he has to grow. I knew all those things but it just threw me for a loop because I walked in there expecting him to just prescribe some new cream not sit with him and the nutritionist for half an hour coming up with a new game plan.
So the end result is we have to increase his feedings by two hours and also increase the hourly amount. We have to work that around his 3 Miralax doses he gets through his tube throughout the day. We tried it last night so he got Miralax at high speed, then his feeds for 10 hours, then another Miralax dose at high speed this morning. This all resulted in a big vomit, which kinda defeats the entire purpose.
And we haven't even figured out how to handle the enzymes. He gets 9 enzymes before his feed and 9 after but now since he's getting more food, we may have to wake him up in the middle of the night to give more. I'm afraid if we don't, his stools will get even stickier and he'll end up with even more blockages, which again defeats the whole purpose.
Ugg, I'm just so frustrated. We're going to have to tweak it each day until we figure it out. I'm also worried because I think Seamus started understanding some of the scary stuff yesterday. He could tell I was upset and he even though he didn't understand all the dire stuff Dr C was saying, he seemed uneasy too.
He gave me the serious talk about how his weight will affect his lifespan and he has to grow. I knew all those things but it just threw me for a loop because I walked in there expecting him to just prescribe some new cream not sit with him and the nutritionist for half an hour coming up with a new game plan.
So the end result is we have to increase his feedings by two hours and also increase the hourly amount. We have to work that around his 3 Miralax doses he gets through his tube throughout the day. We tried it last night so he got Miralax at high speed, then his feeds for 10 hours, then another Miralax dose at high speed this morning. This all resulted in a big vomit, which kinda defeats the entire purpose.
And we haven't even figured out how to handle the enzymes. He gets 9 enzymes before his feed and 9 after but now since he's getting more food, we may have to wake him up in the middle of the night to give more. I'm afraid if we don't, his stools will get even stickier and he'll end up with even more blockages, which again defeats the whole purpose.
Ugg, I'm just so frustrated. We're going to have to tweak it each day until we figure it out. I'm also worried because I think Seamus started understanding some of the scary stuff yesterday. He could tell I was upset and he even though he didn't understand all the dire stuff Dr C was saying, he seemed uneasy too.
Friday, June 5, 2009
Another g-tube question
This is a question to g-tube users and/or caregivers. Others be forewarned, it's pretty gross.
Seamus has had his g-tube for more than 2 years now and really, other than having it needed to be replaced about 8 times for various reasons, he really hasn't had any major problems like infections. But the last few days his stoma has been getting pinker (which has now spread) and last night he really started to complain that it hurt when I touched it, especially when I try to rotate it. It also had some yellow gunky stuff oozing out.
We usually put a mixture of Maalox and Desitin on it and yesterday I did Bacitracin but they haven't helped. He also has started complaining about pooping hurting again and gagged on his enzymes this morning which could be completely unrelated.
I have calls in to the GI nurse and doctor to see if he needs to be seen or just needs some stronger antibiotic cream but sometimes it takes a while to hear back. Since we don't have lots of experience with this, I don't know if it's okay to wait or if we should try to get him in to his pediatrician right away. Any suggestions?
Seamus has had his g-tube for more than 2 years now and really, other than having it needed to be replaced about 8 times for various reasons, he really hasn't had any major problems like infections. But the last few days his stoma has been getting pinker (which has now spread) and last night he really started to complain that it hurt when I touched it, especially when I try to rotate it. It also had some yellow gunky stuff oozing out.
We usually put a mixture of Maalox and Desitin on it and yesterday I did Bacitracin but they haven't helped. He also has started complaining about pooping hurting again and gagged on his enzymes this morning which could be completely unrelated.
I have calls in to the GI nurse and doctor to see if he needs to be seen or just needs some stronger antibiotic cream but sometimes it takes a while to hear back. Since we don't have lots of experience with this, I don't know if it's okay to wait or if we should try to get him in to his pediatrician right away. Any suggestions?
Wednesday, May 27, 2009
Clean out
Please think poopy thoughts for Seamus. He's in the midst of another home clean-out. He had one a month ago which obviously didn't fully do the trick because he's right back to where we started.
This time we insisted on having an x-ray done after the treatment so we could prove to them that one and a half liters of Go-lytely at home isn't nearly enough. We're getting one tomorrow.
This time we insisted on having an x-ray done after the treatment so we could prove to them that one and a half liters of Go-lytely at home isn't nearly enough. We're getting one tomorrow.
Thursday, May 21, 2009
The last four nights Seamus has ended up in our bed. The first night he just spent a few minutes but it has escalated into last night's sleeping all night there after waking up screaming in pain. He was unconsolable for about 10 minutes until he just passed out from exhaustion. This morning he woke up and seems fine but this is usually the first sign of a bigger GI problem. We'll see what happens.
On another note, I held off from Facebook as long as I could but I signed up yesterday and I'm already hooked. If I don't update this blog much, you'll know that's where I am.
Seamus' new joke:
Why did the chicken cross the playground?
To get to the other slide!
On another note, I held off from Facebook as long as I could but I signed up yesterday and I'm already hooked. If I don't update this blog much, you'll know that's where I am.
Seamus' new joke:
Why did the chicken cross the playground?
To get to the other slide!
Tuesday, May 5, 2009
Update
Seamus seems to be doing okay. He hasn't had any more weird problems with his g-tube. I think removing his old one and reinserting a new one helped because it's now in the correct position, that is actually in his stomach. But something is still not right. It's not one thing, but just overall, I have a feeling something is wrong.
He's vomited only once since Sunday and he isn't complaining of pain but he's just not himself. He seems tired and doesn't want to leave the house. He actually cried and begged not to go to soccer class yesterday, which is not like him at all. Pooping still hurts, he's back to being constipated and he has hardly eaten anything in days.
I just hate this. There's not much the doctor can do just looking at him and his symptoms aren't bad enough to go to the ER, yet. They say if he's in pain to take him in but Seamus is so used to pain, he just never complains. So we wait...
He's vomited only once since Sunday and he isn't complaining of pain but he's just not himself. He seems tired and doesn't want to leave the house. He actually cried and begged not to go to soccer class yesterday, which is not like him at all. Pooping still hurts, he's back to being constipated and he has hardly eaten anything in days.
I just hate this. There's not much the doctor can do just looking at him and his symptoms aren't bad enough to go to the ER, yet. They say if he's in pain to take him in but Seamus is so used to pain, he just never complains. So we wait...
Saturday, May 2, 2009
G-tube question
Something strange happened today. Seamus complained a few times about his stoma, the site of his g-tube, hurting. It was a little red so we put cream on it. When it was time for his Miralax treatment this afternoon, I removed the cap on his button to plug him in and he said that hurt. When you open it, the pressure is usually released which should make it feel better, not worse. His pump is run really fast for his Miralax, 500 ml/hr, but he doesn't usually have a problem with it. Today, he didn't tolerate it very well and we noticed his stomach looked odd. Right above his belly button, an area seemed to poof out, like a two inch vertical ridge. After his treatment was over, the ridge went away and he said it didn't hurt any more. I'm wondering if it could be a hernia? He also has a scar from stomach surgery in the same area so maybe his intestines there are weak. He has so much pressure on his intestines all the time, between the DIOS and all the medicine we pump in him at fast speeds.
Has anyone with g-tube experience ever seen something like this? He gets another Miralax treatment tonight at 500 ml/hr and then his feedings all night at 65 ml/hr. I'm afraid to push it until I can talk to the docs but he really can't miss a dose.
Update: I spoke with Dr C, Seamus' GI doc, and he thinks it might be that his stomach has separated from his abdominal wall, which is not a good thing. This can happen right after a g-tube is placed, but not usually 2 years after, like Seamus. He thinks his tube was pushing the fluid into this separated area outside his stomach cavity which was causing the bulge. We replaced the tube (or I should say James did because I can't stomach it (no pun intended)). If it happens again tonight, we'll need to stop his feeds and take him into the ER tomorrow.
Has anyone with g-tube experience ever seen something like this? He gets another Miralax treatment tonight at 500 ml/hr and then his feedings all night at 65 ml/hr. I'm afraid to push it until I can talk to the docs but he really can't miss a dose.
Update: I spoke with Dr C, Seamus' GI doc, and he thinks it might be that his stomach has separated from his abdominal wall, which is not a good thing. This can happen right after a g-tube is placed, but not usually 2 years after, like Seamus. He thinks his tube was pushing the fluid into this separated area outside his stomach cavity which was causing the bulge. We replaced the tube (or I should say James did because I can't stomach it (no pun intended)). If it happens again tonight, we'll need to stop his feeds and take him into the ER tomorrow.
Friday, April 24, 2009
Again with the poop
Warning: Lots of poop talk ahead
Over the past couple of weeks, it's been evident that Seamus is heading down the blockage road again even with three caps of Miralax every day. After a few days of crying when he went poop and vomiting huge gobs of mucus yesterday, we knew it was time to get cleaned out. He's such a trooper and never complains and when we went in for x-rays yesterday, he was a little charmer. Last night in bed, I thanked him for being such a good boy and he said it was the best part of the day. That definitely makes it easier on me, knowing he's not afraid or upset.
So he isn't completely blocked but he does have a significant back-up. His stools are extremely mucusy and sticky even by CF standards so any back-up is like glue and doesn't clear out easily. We started with a home treatment of a liter of Go-lytely, which normally is a huge amount, but not for my Super Sticky Seamus. It barely touched it. We're going to do another round tomorrow but if that doesn't work, we'll probably end up going in to the hospital. They basically do the same thing we do with the Go-lytely but they can do larger doses and keep in eye on his electrolytes and give him more x-rays to see how it's progressing.
Phoenix's mom, Angela, posted this video today. Please say a prayer and think good thoughts for Angela today. She's been having a rough time lately. She's such a special person and does so much for the CF cause. When we first found out about Seamus' diagnosis, someone gave me this poem and I've always loved it. I love Holland more than I could ever have imagined.
Over the past couple of weeks, it's been evident that Seamus is heading down the blockage road again even with three caps of Miralax every day. After a few days of crying when he went poop and vomiting huge gobs of mucus yesterday, we knew it was time to get cleaned out. He's such a trooper and never complains and when we went in for x-rays yesterday, he was a little charmer. Last night in bed, I thanked him for being such a good boy and he said it was the best part of the day. That definitely makes it easier on me, knowing he's not afraid or upset.
So he isn't completely blocked but he does have a significant back-up. His stools are extremely mucusy and sticky even by CF standards so any back-up is like glue and doesn't clear out easily. We started with a home treatment of a liter of Go-lytely, which normally is a huge amount, but not for my Super Sticky Seamus. It barely touched it. We're going to do another round tomorrow but if that doesn't work, we'll probably end up going in to the hospital. They basically do the same thing we do with the Go-lytely but they can do larger doses and keep in eye on his electrolytes and give him more x-rays to see how it's progressing.
Phoenix's mom, Angela, posted this video today. Please say a prayer and think good thoughts for Angela today. She's been having a rough time lately. She's such a special person and does so much for the CF cause. When we first found out about Seamus' diagnosis, someone gave me this poem and I've always loved it. I love Holland more than I could ever have imagined.
Monday, April 6, 2009
Endoscopy
We had to be at the hospital at 6:30 this morning for Seamus' endoscopy. Things went well and the doctor declared his GI tract looked "pristine". You can't get much better than that. We have to wait about a week for the biopsy results but he didn't expect to find anything.
This was about the 5th endoscopy Seamus has had so we're used to the routine but it's never easy walking him back to the operating room and watching them put him under. He usually recovers pretty easily but the last time he had this done, there was a big mix-up in the recovery room and they put him about a foot away from a teenager with CF, they literally could have reached out and touched each other. I heard the kid coughing like crazy but I assumed it was from the anesthesia. When I heard his doctors talking about Pulmozyme and Tobi, and telling him "all the gunk in his lungs had gotten stirred up" during the surgery, I freaked out. Of course, they wouldn't tell me what he had but I knew and I couldn't get the nurses to move him because they didn't understand about CF. They actually told me "Don't worry, he can't catch it." It was obvious the kid next to us was very ill and I had no idea what he had growing in his lungs and coughing out into the air Seamus was breathing. There's a reason they want CF patients to stay three feet apart. Finally after calling the director of the CF clinic, who was speechless, and said this was a huge mix-up, we got Seamus' bed moved across the room.
This time was much better but it will never be easy seeing him laying in that hospital bed.
This was about the 5th endoscopy Seamus has had so we're used to the routine but it's never easy walking him back to the operating room and watching them put him under. He usually recovers pretty easily but the last time he had this done, there was a big mix-up in the recovery room and they put him about a foot away from a teenager with CF, they literally could have reached out and touched each other. I heard the kid coughing like crazy but I assumed it was from the anesthesia. When I heard his doctors talking about Pulmozyme and Tobi, and telling him "all the gunk in his lungs had gotten stirred up" during the surgery, I freaked out. Of course, they wouldn't tell me what he had but I knew and I couldn't get the nurses to move him because they didn't understand about CF. They actually told me "Don't worry, he can't catch it." It was obvious the kid next to us was very ill and I had no idea what he had growing in his lungs and coughing out into the air Seamus was breathing. There's a reason they want CF patients to stay three feet apart. Finally after calling the director of the CF clinic, who was speechless, and said this was a huge mix-up, we got Seamus' bed moved across the room.
This time was much better but it will never be easy seeing him laying in that hospital bed.
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