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.
Wednesday, December 30, 2009
Sunday, October 25, 2009
Memorable week
Last week started with a lunch trip to Burger King for James, Seamus, and myself. Surprisingly, it's one of the few fast food places where Seamus can get milk-free, soy-free, beef-free, and pork-free food and they give away good toys.
As we were sitting there, a swarm of police ran by the window with their guns drawn. They ran over to the 7-11 next door. More and more policemen came and surrounded the place. Finally, a man came running out with no shirt on (in 30 degree weather) and a knife in his hand and tried to attack one of the policemen. Within minutes, at least 10 gun shots went off and the man was dead.
We had tried to shelter Seamus but the place was all windows and he saw a great deal of it before I could grab him and cover his eyes. I was much more shaken up about it than him. We don't let him watch violent tv but he's a 4 year old boy obsessed with super heroes so he's seen it and to him it's clear cut between the good guys and bad guys. When he casually asked me "Is the bad guy dead?" I knew he wasn't processing the difference between real life and tv. I told him that people may do bad things but that doesn't mean they are bad people but it went over his head. So far, he doesn't seem to be affected by it. I can't say the same for me.
On Wednesday, Seamus and James went to on a pumpkin patch field trip with school and had a fun time. They saw lots of baby animals, including piglets just a few days old, went on a hayride and picked out pumpkins.
Friday was CF clinic day and Seamus had a great visit. He's gained two pounds and grown half an inch so we were thrilled. He also got his H1N1 shot which takes a lot off our mind. We talked with the clinical researchers about getting Seamus in the hypertonic saline trials. Although it will add extra time in his morning and evening treatment routine and he doesn't have a lot of pulmonary issues currently, we thought it would be good for him. Maybe it will help keep away some lung infections this winter. Also, because he's not a good spitter, any stuff he coughs up ends up being swallowed adding to his already super sticky stools. So we figure if the mucuous is thinner in his lungs, it may help the GI issues too.
We spent yesterday making Batman and Spiderman masks and then going for a "Fall Hike" through our neighborhood in our disguises. Today we made pictures with the leaves we collected.
Lately, Seamus has been asking lots of questions about when he was a baby so we've been looking at photo albums. I didn't realize it but he thought that he was born with his feeding tube in his stomach and was surprised to see himself without it in pictures. It makes sense because he was too young to remember when he got it.
He's also been asking about what his kids will be like when he's "all grown up" and who their mommy will be. He thinks it's really funny that I will be their Grandma. For the longest time, he's been saying to anyone who will listen "I want to be a Daddy." I know he's going to be great.
As we were sitting there, a swarm of police ran by the window with their guns drawn. They ran over to the 7-11 next door. More and more policemen came and surrounded the place. Finally, a man came running out with no shirt on (in 30 degree weather) and a knife in his hand and tried to attack one of the policemen. Within minutes, at least 10 gun shots went off and the man was dead.
We had tried to shelter Seamus but the place was all windows and he saw a great deal of it before I could grab him and cover his eyes. I was much more shaken up about it than him. We don't let him watch violent tv but he's a 4 year old boy obsessed with super heroes so he's seen it and to him it's clear cut between the good guys and bad guys. When he casually asked me "Is the bad guy dead?" I knew he wasn't processing the difference between real life and tv. I told him that people may do bad things but that doesn't mean they are bad people but it went over his head. So far, he doesn't seem to be affected by it. I can't say the same for me.
On Wednesday, Seamus and James went to on a pumpkin patch field trip with school and had a fun time. They saw lots of baby animals, including piglets just a few days old, went on a hayride and picked out pumpkins.
Friday was CF clinic day and Seamus had a great visit. He's gained two pounds and grown half an inch so we were thrilled. He also got his H1N1 shot which takes a lot off our mind. We talked with the clinical researchers about getting Seamus in the hypertonic saline trials. Although it will add extra time in his morning and evening treatment routine and he doesn't have a lot of pulmonary issues currently, we thought it would be good for him. Maybe it will help keep away some lung infections this winter. Also, because he's not a good spitter, any stuff he coughs up ends up being swallowed adding to his already super sticky stools. So we figure if the mucuous is thinner in his lungs, it may help the GI issues too.
We spent yesterday making Batman and Spiderman masks and then going for a "Fall Hike" through our neighborhood in our disguises. Today we made pictures with the leaves we collected.
Lately, Seamus has been asking lots of questions about when he was a baby so we've been looking at photo albums. I didn't realize it but he thought that he was born with his feeding tube in his stomach and was surprised to see himself without it in pictures. It makes sense because he was too young to remember when he got it.
He's also been asking about what his kids will be like when he's "all grown up" and who their mommy will be. He thinks it's really funny that I will be their Grandma. For the longest time, he's been saying to anyone who will listen "I want to be a Daddy." I know he's going to be great.
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.
Monday, September 28, 2009
Happy Birthday #4
My Darling Seamus,
Today you turn four, such a big boy! Sometimes I think the time has flown by but when I think back to all you have gone through, I can hardly believe it has fit into four little years.
This year has been another eventful one. You have learned so much and have matured in so many ways. Everyday you show us, beyond our wildest imaginations, how brave and strong you are. On days that I do not feel very brave or very strong, you are my inspiration to keep fighting even when it seems impossible.
This year you have made leaps in your education. You have mastered letters and numbers and are taking the first steps in reading. Your imagination and curiosity are immense and everyday you pick a new "word of the day" about something you're interested in.
You continue to be the most empathetic child I've ever known. Whether it's comforting Ga or stoppping to help the kids at soccer class who have fallen, you are always thinking about how others feel.
This is one of our favorite verses from one of our favorite books:
"If you'd never been born, well what would you be?
You might be a fish! Or a toad in a tree!
You might be a door knob! Or three baked potatoes!
You might be a bag full of hard green tomatoes!
Or worse than all that... why, you might be a
WASN'T!
A Wasn't has no fun at all. No, he doesn't.
A Wasn't just isn't. He just isn't present.
But you... you ARE YOU! And now, isn't that pleasant!"
-- Dr. Seuss, from Happy Birthday To You!
I love you, my little porcupine and I am so glad you are you. You will always be my bestest boy.
Love-
Mommy
Today you turn four, such a big boy! Sometimes I think the time has flown by but when I think back to all you have gone through, I can hardly believe it has fit into four little years.
This year has been another eventful one. You have learned so much and have matured in so many ways. Everyday you show us, beyond our wildest imaginations, how brave and strong you are. On days that I do not feel very brave or very strong, you are my inspiration to keep fighting even when it seems impossible.
This year you have made leaps in your education. You have mastered letters and numbers and are taking the first steps in reading. Your imagination and curiosity are immense and everyday you pick a new "word of the day" about something you're interested in.
You continue to be the most empathetic child I've ever known. Whether it's comforting Ga or stoppping to help the kids at soccer class who have fallen, you are always thinking about how others feel.
This is one of our favorite verses from one of our favorite books:
"If you'd never been born, well what would you be?
You might be a fish! Or a toad in a tree!
You might be a door knob! Or three baked potatoes!
You might be a bag full of hard green tomatoes!
Or worse than all that... why, you might be a
WASN'T!
A Wasn't has no fun at all. No, he doesn't.
A Wasn't just isn't. He just isn't present.
But you... you ARE YOU! And now, isn't that pleasant!"
-- Dr. Seuss, from Happy Birthday To You!
I love you, my little porcupine and I am so glad you are you. You will always be my bestest boy.
Love-
Mommy
Friday, September 25, 2009
Goodbye My Friend
We lost a very close friend this week. Our cat, Izzy, had to be put to sleep on Tuesday because he had "thrown a clot" which means somehow a blood clot found it's way to his hind end and we found him paralyzed on the basement floor. By the time James got him to the vet, his heart was giving out and his lungs were full of fluid.
Izzy was fifteen and had numerous health problems so the vet was always amazed at each visit at how well he was doing. He was my original baby. We were together long before I met James or ever thought about Seamus and when I decided to move to DC all alone fourteen years ago, he was the one who kept me company on lonely Friday nights. I also had another cat, Alice, but I adopted her as an adult and she never really needed me the way Izzy did. Izzy was cool because he was very loving but not overly needy. He was huge, 32 pounds pre-diabetes, and was much more dog-like, than cat-like.
He was so sweet with Seamus. I think they saw each other as kindred spirits, both took lots of medicine and went to the doctor's often. After this last hospitalization, Seamus was lying on the couch one day getting his dreaded hydrocortisone suppository and was screaming and sobbing. Izzy ran right over and tried to jump up in between us . After we pushed him away, he ran to the end table near Seamus' head and jumped up again. Now Izzy was huge and old so he did not jump often, but nothing was keeping him from his pal Seamus. We pushed him away again and then he jumped onto the back of the couch, which I have never seen him do. He reached his paws down to touch Seamus to let him know he would protect him. And it calmed Seamus right down.
Tuesday night, we told Seamus that Izzy was in heaven now with his grandpa and was keeping him company. He said "That's a good idea." We went on to say that Izzy wasn't sick anymore and didn't need any more shots or medicine. Seamus looked really happy and I knew he was thinking about his own treatments and medicine. Then he said "Do they have little kid stuff in heaven?" I had to choke back the tears when James said "Yes, they do" and all I could think of was "Yes, but I wish they didn't need to."
Good bye, Izzy, my love. We will all miss you terribly.
Izzy was fifteen and had numerous health problems so the vet was always amazed at each visit at how well he was doing. He was my original baby. We were together long before I met James or ever thought about Seamus and when I decided to move to DC all alone fourteen years ago, he was the one who kept me company on lonely Friday nights. I also had another cat, Alice, but I adopted her as an adult and she never really needed me the way Izzy did. Izzy was cool because he was very loving but not overly needy. He was huge, 32 pounds pre-diabetes, and was much more dog-like, than cat-like.
He was so sweet with Seamus. I think they saw each other as kindred spirits, both took lots of medicine and went to the doctor's often. After this last hospitalization, Seamus was lying on the couch one day getting his dreaded hydrocortisone suppository and was screaming and sobbing. Izzy ran right over and tried to jump up in between us . After we pushed him away, he ran to the end table near Seamus' head and jumped up again. Now Izzy was huge and old so he did not jump often, but nothing was keeping him from his pal Seamus. We pushed him away again and then he jumped onto the back of the couch, which I have never seen him do. He reached his paws down to touch Seamus to let him know he would protect him. And it calmed Seamus right down.
Tuesday night, we told Seamus that Izzy was in heaven now with his grandpa and was keeping him company. He said "That's a good idea." We went on to say that Izzy wasn't sick anymore and didn't need any more shots or medicine. Seamus looked really happy and I knew he was thinking about his own treatments and medicine. Then he said "Do they have little kid stuff in heaven?" I had to choke back the tears when James said "Yes, they do" and all I could think of was "Yes, but I wish they didn't need to."
Good bye, Izzy, my love. We will all miss you terribly.
Wednesday, September 16, 2009
Thanks
I want to thank everyone for the kind and encouraging comments. I have not been very good at keeping up with other blogs but I know everyone has their own issues that they're dealing with so I really appreciate people taking time out to think about us.
Seamus is doing great. He has a little cold but that's not holding him back. I knew he really was feeling better when he told me last night that going potty "didn't feel hard like wood any more. It feels soft like a pillow."
We're starting to plan his birthday party in a couple weeks. It's going to be all things Spiderman! We're going to have two bouncy houses in our backyard but I have to think of other Spidey related things. If anyone has any clever ideas, please let me know.
And, oh yeah, he's gained two pounds!
Seamus is doing great. He has a little cold but that's not holding him back. I knew he really was feeling better when he told me last night that going potty "didn't feel hard like wood any more. It feels soft like a pillow."
We're starting to plan his birthday party in a couple weeks. It's going to be all things Spiderman! We're going to have two bouncy houses in our backyard but I have to think of other Spidey related things. If anyone has any clever ideas, please let me know.
And, oh yeah, he's gained two pounds!
Sunday, September 13, 2009
More Vacation pix and video
Seamus goes back to CF clinic tomorrow to get his PICC line taken out. This morning he woke up with a runny nose, all sneezy and a low grade fever. I think he probably caught a cold after just two days of school. We'll see what they say.
His other issues seem better. He's able to poop without straining and says it doesn't hurt. That is a huge improvement.
This week was busy. He started school, 3 days a week, and soccer classes. I think it took a lot out of him but he loves it.
Here's more pictures from our vacation and a cute video.
His other issues seem better. He's able to poop without straining and says it doesn't hurt. That is a huge improvement.
This week was busy. He started school, 3 days a week, and soccer classes. I think it took a lot out of him but he loves it.
Here's more pictures from our vacation and a cute video.
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.
Thursday, September 3, 2009
Latest
I am just worn down and haven't been able to post. Facebook is different because that's short little updates but when I sit down to write a blog post, I just feel overwhelmed.
The last time I wrote, Seamus had gone back to the hospital for the 2nd time in a month and sent home again with a "It's just a virus" diagnosis. We were able to go on vacation but by the third day, Seamus started again with the uncontrollable diarrhea and terrible cramping. It was bad, all over the hotel room, in the hotel pool area (we just barely got him out of the pool in time.), ... When we got back home, he started in with the fevers again and then the constipation.
We took him into his GI doctor to get bloodwork done again and again were told, "It's probably only a virus". Who gets a virus that keeps coming back every 2 weeks with the same exact symptoms? On the way home from Baltimore, we got into a car accident. It wasn't too bad but my neck and back were stiff and very sore so they took me away strapped to a flatboard to the hospital. Seamus really was upset by this. So not only was he feeling really sick, he was emotionally a wreck. We finally made it home late that night.
Saturday, he was no better and by the nighttime he was complaining of severe pain in his stomach, especially when pushing to poop, and vomiting. After waking up at 1:00 AM in inconsolable pain, we decided we couldn't wait for the bloodwork to come back again so we headed back to the ER.
I'm glad we did because they took one look at the x-ray and said he has pneumonia. But the part that really pissed me off is they looked back at the x-ray from our ER visit two weeks ago and said "Oh, that shows pneumonia too. Sorry, we must have overlooked it." What!!! I understand pneumonia can present differently and isn't always clear cut but in a kid with CF, wouldn't you just err on the side of caution and assume it is, especially with fevers of 103 plus???
He also had some more poop that appeared stuck so they wanted another clean out. Since he was admitted under the Pulmonary service because of the pneumonia, they called the shots. Normally he is under the GI service. Well, they have different ideas of what a clean out is. Pulm decided he needed to be NPO, instead of on a clear diet, and ran the Go-Lytely at ridiculously high speeds which caused Seamus a lot of pain, even vomiting. GI says clear is when there are no more particles. Pulm says clear is when it looks like water. By Tuesday, he was still on it, even though GI thought he was done and could eat. The poor kid hadn't eaten or even had water since Saturday dinner.
Not only that, I walked into the room after going to work on Tuesday, and saw his left arm swollen about three sizes bigger than normal. His IV had infiltrated and they hadn't noticed. It was bad, the nurse kept running around telling everyone "It's massive! It's massive!" The "antidote" to this is to give 5 shots in his hand at the exact same time which is supposed to soak up the fluid. Seamus is traumitized by any needles since he's been pricked so much for IVs and bloodwork and seeing 5 nurses all coming at him with needles in their hand was too much for him to handle.
Between the pneumonia being overlooked for 2 weeks, the two teams not working together and the IV incident, I totally lost it. Seamus has been through enough and all of these things were all preventable. I know I'm his advocate and need to keep on top of everything because he can't, but it is so tiring.
Since most of his symptoms were more GI related than pneumonia, they think there is some other kind of infection going on, so yesterday when they put in the PICC line so we can take him home on IV antibiotics, they also did a bronchoscopy, endoscopy, and colonoscopy. The last one was at our request, it hadn't occurred to them. Thank god they did it because that procedure revealed the most information.
Seamus has rectal ulcers, and inflammation (almost to the point of being totally closed off) of the TI area where the small and large intestines come together. It's interesting because that's where he gets his blockages every time, which now makes sense. He may also have peptic ulcers and IBD. I feel so bad for him and all the times we forced him to sit on the potty and push.
Today they are going to do a CT scan of his abdomen and pelvic area to see if there are any abcesses that they might have missed in the scopes.
But again, Pulm came last night to talk to us and they knew nothing about the rectal ulcers and the TI issue and were just going to start him on treatment for peptic ulcers that GI never mentioned to us. So that' s very concerning that they dont' seem to be on the same page.
I have no idea how long we'll be in here. Nobody has even started talking about discharge. Seamus is in good spirits, better than the rest of us.
So there you are, caught up. I'll try to update more often.
The last time I wrote, Seamus had gone back to the hospital for the 2nd time in a month and sent home again with a "It's just a virus" diagnosis. We were able to go on vacation but by the third day, Seamus started again with the uncontrollable diarrhea and terrible cramping. It was bad, all over the hotel room, in the hotel pool area (we just barely got him out of the pool in time.), ... When we got back home, he started in with the fevers again and then the constipation.
We took him into his GI doctor to get bloodwork done again and again were told, "It's probably only a virus". Who gets a virus that keeps coming back every 2 weeks with the same exact symptoms? On the way home from Baltimore, we got into a car accident. It wasn't too bad but my neck and back were stiff and very sore so they took me away strapped to a flatboard to the hospital. Seamus really was upset by this. So not only was he feeling really sick, he was emotionally a wreck. We finally made it home late that night.
Saturday, he was no better and by the nighttime he was complaining of severe pain in his stomach, especially when pushing to poop, and vomiting. After waking up at 1:00 AM in inconsolable pain, we decided we couldn't wait for the bloodwork to come back again so we headed back to the ER.
I'm glad we did because they took one look at the x-ray and said he has pneumonia. But the part that really pissed me off is they looked back at the x-ray from our ER visit two weeks ago and said "Oh, that shows pneumonia too. Sorry, we must have overlooked it." What!!! I understand pneumonia can present differently and isn't always clear cut but in a kid with CF, wouldn't you just err on the side of caution and assume it is, especially with fevers of 103 plus???
He also had some more poop that appeared stuck so they wanted another clean out. Since he was admitted under the Pulmonary service because of the pneumonia, they called the shots. Normally he is under the GI service. Well, they have different ideas of what a clean out is. Pulm decided he needed to be NPO, instead of on a clear diet, and ran the Go-Lytely at ridiculously high speeds which caused Seamus a lot of pain, even vomiting. GI says clear is when there are no more particles. Pulm says clear is when it looks like water. By Tuesday, he was still on it, even though GI thought he was done and could eat. The poor kid hadn't eaten or even had water since Saturday dinner.
Not only that, I walked into the room after going to work on Tuesday, and saw his left arm swollen about three sizes bigger than normal. His IV had infiltrated and they hadn't noticed. It was bad, the nurse kept running around telling everyone "It's massive! It's massive!" The "antidote" to this is to give 5 shots in his hand at the exact same time which is supposed to soak up the fluid. Seamus is traumitized by any needles since he's been pricked so much for IVs and bloodwork and seeing 5 nurses all coming at him with needles in their hand was too much for him to handle.
Between the pneumonia being overlooked for 2 weeks, the two teams not working together and the IV incident, I totally lost it. Seamus has been through enough and all of these things were all preventable. I know I'm his advocate and need to keep on top of everything because he can't, but it is so tiring.
Since most of his symptoms were more GI related than pneumonia, they think there is some other kind of infection going on, so yesterday when they put in the PICC line so we can take him home on IV antibiotics, they also did a bronchoscopy, endoscopy, and colonoscopy. The last one was at our request, it hadn't occurred to them. Thank god they did it because that procedure revealed the most information.
Seamus has rectal ulcers, and inflammation (almost to the point of being totally closed off) of the TI area where the small and large intestines come together. It's interesting because that's where he gets his blockages every time, which now makes sense. He may also have peptic ulcers and IBD. I feel so bad for him and all the times we forced him to sit on the potty and push.
Today they are going to do a CT scan of his abdomen and pelvic area to see if there are any abcesses that they might have missed in the scopes.
But again, Pulm came last night to talk to us and they knew nothing about the rectal ulcers and the TI issue and were just going to start him on treatment for peptic ulcers that GI never mentioned to us. So that' s very concerning that they dont' seem to be on the same page.
I have no idea how long we'll be in here. Nobody has even started talking about discharge. Seamus is in good spirits, better than the rest of us.
So there you are, caught up. I'll try to update more often.
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.
Thursday, August 13, 2009
So what have we been up to? Not a whole lot. Seamus has been sick off and on pretty much the whole summer and hasn't felt up to much. Currently, he has a fever that he's had since yesterday. We're not sure what's going on.
It's not all bad. We are very excited about the VX-770 news. For the first time, I really believe a cure is possible in Seamus' lifetime. I've always hoped for one but deep down I don't know if I really believed it.
Since we've been home bound, we've been working a lot on reading. He's not truly reading but can pick out words by sounding them out. Sometimes we look at the pictures and come up with our own stories based on people's expressions.
His growing vocabulary is cracking me up. His three favorite things to say are "actually", "suddenly" and "well", like "Well, actually, I do not want hot dogs for lunch. Suddenly, I would like chicken nuggets."
Here are a few pix from the past few weeks:
It's not all bad. We are very excited about the VX-770 news. For the first time, I really believe a cure is possible in Seamus' lifetime. I've always hoped for one but deep down I don't know if I really believed it.
Since we've been home bound, we've been working a lot on reading. He's not truly reading but can pick out words by sounding them out. Sometimes we look at the pictures and come up with our own stories based on people's expressions.
His growing vocabulary is cracking me up. His three favorite things to say are "actually", "suddenly" and "well", like "Well, actually, I do not want hot dogs for lunch. Suddenly, I would like chicken nuggets."
Here are a few pix from the past few weeks:
Tuesday, August 4, 2009
Moon light
The last few nights have been pretty cloudy so we haven't been able to see the stars. Last night as Seamus and I cuddled in the dark and looked out the window before he went to bed, I heard a little voice say:
"Moon light, Moon Bright,
First moon I see tonight.
Wish I may, wish I might,
Have this wish I wish tonight.
I wish I had a merry-go-round in my house."
"Moon light, Moon Bright,
First moon I see tonight.
Wish I may, wish I might,
Have this wish I wish tonight.
I wish I had a merry-go-round in my house."
Sunday, August 2, 2009
Why?
We were looking at the beautiful pictures of our bloggy friend, Natalia, and her baby, Scarlett, yesterday. I pointed to Natalia and said she has CF like you.
Seamus asked "Does the baby have CF too?"
"No, just the Mommy."
"Why?"
"Some people have it and some people don't, just like Daddy and I don't."
"Do I still have CF?"
"Yes, Honey."
"Why?"
This is getting really hard.
Seamus asked "Does the baby have CF too?"
"No, just the Mommy."
"Why?"
"Some people have it and some people don't, just like Daddy and I don't."
"Do I still have CF?"
"Yes, Honey."
"Why?"
This is getting really hard.
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.
Thursday, July 16, 2009
Deja vu all over again
I guess the title of my last post was wishful thinking. He came home on Wednesday the 8th and by Fiday the 10th he was puking again. I thought it was because our neighbor was nice enough to bring over a dinner for us on Thursday which she assured us had no milk, but apparently that didn't include cheese. We didn't realize until Seamus had eaten half a bowl and then complained that his stomach hurt all night. He threw up in CF clinic the next morning but we really didn't think anything of it until he puked twice on Saturday. My last post I wrote we were going to the Aquatic Gardens but we never made it there because he threw up in the car 2 minutes into the drive. He kept up with the puking until Tuesday when Dr C said he didn't think the milk incident could be the cause and to bring him back into the ER.
So Tuesday night, we went through the whole routine again with the brand new doctors and they couldn't find anything in his x-rays or blood work. They came up with the idea that he caught some kind of stomach bug while he was in the hospital but I don't buy it. He was only puking when trying to swallow or use his feeding tube which is exactly how he was acting before his eosinophilic esophagitis was diagnosed. And I've never seen a stomach bug last a week. I think the milk really caused his EE to flare up which had a whole domino effect.
The good news is he hasn't thrown up in two days but he is very lethargic and doesn't ever want to leave the house. He still has issues with swallowing and has no appetite. So we haven't been up to anything fun. I'm not going to jinx it by saying what our plan is for tomorrow.
I want to include at least something positive so here's some pictures of the July 4th weekend before all the hospital stuff began:
So Tuesday night, we went through the whole routine again with the brand new doctors and they couldn't find anything in his x-rays or blood work. They came up with the idea that he caught some kind of stomach bug while he was in the hospital but I don't buy it. He was only puking when trying to swallow or use his feeding tube which is exactly how he was acting before his eosinophilic esophagitis was diagnosed. And I've never seen a stomach bug last a week. I think the milk really caused his EE to flare up which had a whole domino effect.
The good news is he hasn't thrown up in two days but he is very lethargic and doesn't ever want to leave the house. He still has issues with swallowing and has no appetite. So we haven't been up to anything fun. I'm not going to jinx it by saying what our plan is for tomorrow.
I want to include at least something positive so here's some pictures of the July 4th weekend before all the hospital stuff began:
Saturday, July 11, 2009
Back to Normal
Seamus came home Wednesday evening and has been just relaxing since. He had a CF clinic appointment on Friday. I had missed so much work that I couldn't go so James took him alone. He's gained a pound and a half in 2 months which is great considering he hadn't eaten anything for 4 days while he was in the hospital. His coughing has increased a little probably due to the beginning of an ear infection so we won't be going to the pool today. After the appointment, we always like to take Seamus on an "adventure" so they went to see "Ice Age 3". Seamus gave it a thumbs up.
We may go to the Kenilworth Aquatic Gardens today. It's a beautiful place right in the middle of an urban area that most people don't know exists. He can run around but not be around a lot of people which I think is what he needs.
We may go to the Kenilworth Aquatic Gardens today. It's a beautiful place right in the middle of an urban area that most people don't know exists. He can run around but not be around a lot of people which I think is what he needs.
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.
Monday, June 29, 2009
Back to reality
Seamus is having a very hard time getting adjusted to being home. His sleeping pattern has been crazy. The first few mornings after we got home, he woke up very early but then on Sunday he slept until 11 AM. This morning he got up at 4 AM. Right now as I write this at 11:15 PM, he is laying wide awake in his bed. While we were away, his medications and treatments were not always on schedule either and he's definitely feeling the effects of that. He started a new cough today and has been complaining of a tummy ache.
So we have not been doing very much except relaxing at home. Seamus didn't even want to go to the pool over the weekend. I hope he just needs to rest up and he'll be back to his normal self soon.
So we have not been doing very much except relaxing at home. Seamus didn't even want to go to the pool over the weekend. I hope he just needs to rest up and he'll be back to his normal self soon.
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:
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