Catching up

It's been a busy Fall and Winter at our house. The big news is I'm pregnant! We are expecting another son in March and we're all excited. I think Seamus was more excited earlier and just wishes it would be over already. When I ask him to come feel the baby kick, he rolls his eyes and says "Mommy, I don't need to feel the baby again." Mommy also wishes it would be over soon. This is hard work for a "mature" lady like me.

Seamus was sick the entire month of November. He started the month with an endoscopy because an x-ray showed a piece of his old g-j tube stuck in his stomach. They went in to remove it but then couldn't find it. However, the breathing tube used for anesthesia seemed to stir up gunk in his lungs because two days later he ended up in the ER with pneumonia. He stayed for a week and then went home on IV antibiotics for another two weeks. After that, he still wasn't better and has been on oral antibiotics hoping to finally kick his cough that he's had since July. He finishes on Christmas Day and hopefully he can get a Christmas miracle and have it be gone for good.

He's been enjoying school a lot this year. He's a big Kindergartner and is really learning a lot. He told me today he can't wait for Christmas break to be over so he can go back to school. We're having a very difficult time trying to find a school for him next year. His current school is just Pre-K and K. Our local elementary school has class sizes of 30-35 which would definitely not work for him because of all the germs.

He's still taking dance class, tap and ballet, and even though he's not the most coordinated, he still loves it. And of course, he still spends hours each day drawing and cutting his "paper dudes". I think art is going to be his thing.

Seamus is very excited about Christmas but I think he's catching on about Santa. He keeps talking about how the Santa he saw this year didn't look like the one from previous years. He's too smart for his own good. Yesterday, he ran around the house and collected all the tissue boxes and drew family portraits on all of them. Then he wrapped them up for Christmas presents and said "Now when they blow their nose, they can look at pictures of their family." He's very thoughtful.

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.

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!

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.

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.

Mommy laid up

Yesterday, we were all ready to go get Seamus' x-ray when I bent down and my back completely went out and there was no way I was getting up. It was quite a logistical nightmare because we were still waiting to hear from the GI doc who was supposed to send an order to the X-ray place and then after the x-ray, we were supposed to go the pediatrician to review the film. So my not being able to move really put a wrench in the plans. To make a long story short, somehow I got to the doc with my mom basically carrying me while James and Seamus did his stuff.

The good news is the x-ray was clear so Seamus' treatment seemed successful, but the bad news is I'll be in bed the next few days on major drugs. It supposed to rain for the next few days so at least I won't be missing out on good pool days. But I'm not a good patient, I keep thinking, "Oh, my back feels better" so I get up but after about 10 minutes, I realize it's a bad idea. Seamus is being a good helper filling my water glass and bringing books and games in here to play so I won't be lonely.

Clinic visit

Woo Hoo! Clinic went great this morning. Seamus has gained a pound and grown an inch! So now he's at 41st percntile for height and 66th for weight which is an overall BMI of 78. Can't ask for better than that. His lungs sound good and hopefully his culture will come back clean since he's been on Omniceff for the last week because he was having increased cough.

We talked a little about his GI problems these last couple of weeks but the CF doctors really don't have much to say about that. Seamus' GI issues are so extreme that they haven't dealt with anyone like him so they leave it up to the GI folks. But today he seems to be pain free and is pooping so we're not complaining.

A funny story:
Seamus is a big fan of classic rock music. Often while riding in the car, he asks me to stop the radio on a station that plays lots of AC/DC, Cars, Eagles, etc and we usually rock out to a few songs. This morning we sang along with Paul McCartney and Wings. A while later, Seamus told me his favoite song was "Bad Dollar Rug". It took me awhile but then I realized that's a much better title than "Band on the Run."

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...

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.

Tough Questions

Seamus is feeling better. His cough finally went away and his culture from last week's clinic visit was clear!

Lately, Seamus has been very inquisitive and not about simple things. He has three friends who have pregnant Mommies. He knows that means they are going to have babies and he asked me the other day when we would have a new baby. He has also been talking a lot about his grandfather, Pa, who passed away last August. Seamus knows he's in Heaven and that he is watching us from up there but he asked recently "But what is Heaven?"

Normally, I would answer these questions with a very simple explanation, but that no longer seems to satisify him. It has started me thinking about how I'm going to handle the really tough questions about his health. He knows he has CF and needs to do his treatments and medicine to stay healthy and for now that's fine. But he's going to start to read soon and I don't want him to read something scary somewhere and think we were lying to him his whole life. I know there will be a cure in Seamus' lifetime but there is a lot of misinformation out there and I would hate for him to stumble across something that would frighten him.

For all the adults with CF out there, how did you find out about the scary facts of CF? Did you parents tell you or did you find out on your own? If the latter, how did it make you feel?

For any CF parents, have any of you had to deal with this yet?

Good Clinic

Today's clinic visit went well. Dr P said Seamus' lungs sound good and she thinks he probably caught two separate bugs which was why it seemed like he was getting better after being on Augmenten for 10 days and then getting drastically worse again. Hopefully the Omniceff will kick that soon. She was concerned that he has been getting out of breath which is new. She thinks he may have inflammation of his lungs since he's been coughing for 3 weeks so she put him on a 5 day dose of Prednisone.

But the best news was he gained almost a pound! That brings him back up to the 57th percentile. His height is still the 38th percentile but I think having a five foot tall mother has more to do with that then CF.

Tomorrow we're all going to the circus so I'll have lots to report!

Feeling Better

The antibiotics finally kicked in late yesterday. Clinic had said to go ahead and bring him in today but by yesterday evening, his cough was much better and he slept much better. That is until the feeding pump incident.

He gets Miralax in 250 ml of water through his g-tube when he first goes to bed which needs to go in fast, 500 ml/hr. When that's done we switch him to his formula which runs all night at 65 ml/hr. Last night we accidently forgot to change the settings so in half an hour he had already gotten four hours worth of formula. He woke up screaming and vomiting all over the place. The poor kid can't catch a break. He was finally starting to feel better from his cough and then we go and pump his stomach until it's ready to burst. We felt so terrible.

This morning he was chipper as ever, so I think his stomach is okay. We called clinic and said we weren't going to bring him in after all.

Bad Night

Seamus' cough has never been this bad. He was up all night coughing and choking on mucus and none of us slept at all The only time he was remotely this bad, he ended up on IV antibiotics in the hospital. He's been on oral antibiotics at home for just a few days so hopefully they'll start working soon. If not, they want us to bring him into clinic.

I read all the other CF mom's blogs and I know this isn't all that bad compared to how it could be. I give so much credit to the families who deal with pulmonary stuff all the time but for Seamus, it's really rare so it's really scary to me.

Most of the time, I'm in denial. There's not a minute in a day that I don't think about Seamus having cystic fibrosis but I've always had the "comfort" of knowing he "only has GI issues". I read the other blogs and think, "Thank God, that's not us" but last night lying in bed helplessly listening to him, I couldn't help thinking "Okay, is this the beginning? Has the lung damage started?"

I try to tell myself that I'm overreacting. Of course he'll be better soon and his lungs won't be permanently affected from this episode. But how long will that be true? As a CF parent, I cling to the hope that a cure will be found before his lungs are damaged beyond repair, but as I lay in bed at 1:00 AM and hear my precious son gasping to breathe between coughing fits, it's really hard to hang on to that.

Update

It's been awhile since I've posted. I just haven't been in the mood, I guess.

I feel bad because Seamus' little cough has now turned into a huge hacking cough. We held off on the antiobiotics but now I think we waited too long. Since he rarely has any pulmonary issues, it really freaks me out to see him like this. He's bringing up lots of gunk but he still can't figure out the whole spitting thing so he ends up swallowing it. This morning he vomited tons of thick mucous. I'm glad he got it out because otherwise it ends up in his stool which is already sticky enough.

On a happier note, we had a nice weekend. We spent a lot of time making paper ties and hats for tea parties and Elmo's birthday party. He loves to line up his "dudes" on all the furniture with their fancy hats and ties on. Sometimes, you can't find a seat in the house because everywhere is covered with a stuffed animal.

We also had a great time at our neighbor, Emily's, 70th birthday party. It was held at Blob's Park which is a German Polka place. Seamus wanted to bring a "dude" with him so we told him he had to chose one. He picked Snoopy because "he's the best dancer." Seamus (and Snoopy) really got the hang of the polka and entertained the crowd.

Yesterday, we had our first snowstorm with about 7 inches. I got a snowday off from work so Seamus helped me shovel and sweep off the cars. Then we spent the afternoon cuddled up in bed playing Nickolodeon computer games. Not a bad way to spend the day.

Seamus' List

Christy at Color Me Healthy had a good idea. Because the CF blogging community has gotten so big, it's hard to keep track of who is dealing with what issues and what treatments everyone is on. She posted a list of a few things about herself to get people caught up. So here is Seamus' list.

1. He was born on September 28, 2005 with Meconium Ileus and spent 10 days in the NICU.

2. Because of amniocentesis, we knew before he was born that he had CF with mutations DeltaF508 and R542X.

4. He has been hospitalized 16 times with GI problems, mostly Distal Intestinal Obstruction Syndrome.

5. At 18 months, he had a pyloroplasty to widen the opening between his stomach and intestines and a g-j tube was placed in hopes of stopping his excessive vomiting and weight loss.

6. A year later, he was still vomiting almost everyday. Another endoscopy was done and he was found to have eosiniphilic esophagitis.

7. He is allergic to milk, soy, beef, and pork.

8. His daily meds are: Digestive - Miralax 1 capful thru g-tube/3x day; Mucomist, 2 mls/2xday, Vitamax 1 ml/2xday, Vitamin D3 15 ml/1 day, Prevacid 30 mg/2x day; Primadophilus Reuteri (probiotic) 1 tsp/1xday; Flovent 110mcg 2 puffs without spacer/2x day; Pancrecarb MS-4 9 with meals and before and after tube feeds. Respiratory - Flovent 44mcg 2 puffs with spacer/2x day; Pulmozyme 2.5 ml neb/1xday; Chest Percussion Therapy via InCourage vest, 30 minutes/2x day.

9. They switched his g-j tube to a g-tube 6 months ago. He gets 8 hour feeds each night and is still struggling with weight gain.

10. Seamus loves being around other kids, probably because he is an only child.

11. He loves pre-school, the Wii, Spiderman and SpongeBob.

12. He is an amazing kid and is always concerned about others. Everyday, he inspires me to be a better person.

13. His favorite joke: "Guess what?" "Chicken Butt!"

CF Appt

Yesterday, Seamus had his CF appointment. The timing was good because I've been sick all week with a sinus/bronchitis thing and thought it would be good to get him checked out.

The good news is even though his nose has been running like crazy, his lungs sounded fine. Dr P gave us a prescription for antibiotics in case it turns into a "serious" cough. He coughs in the morning a lot but I think that's from post-nasal drip so we haven't filled the prescription, but what if I'm wrong? It's so hard to judge when we should be cautious and give them to him to try to avoid any lung damage at all or hold off on the antibiotics so he's not resistant to them later on in life when he will definitely need them.

The bad news was the dreaded weigh in. He didn't gain any weight again. When he got his feeding tube put in two years ago, he was down to about the 20th percentile and after being on it a few months, he jumped up to about the 80th percentile. He's been slowly heading back down and now he's at the 51st. That's not really bad but that's with being hooked up to a feeding tube eight hours a night! I can't imagine what would have happened if he didn't get it put in. We're going to increase his feeds at night and hope that helps.

Because he's getting taller without gaining any weight, he looks a lot skinnier and pants that used to fit are now falling off of him. Literally. We were in the subway station last week on our museum adventure and he said "Ohhh". I looked down and his pants were around his ankles. The funny thing is I had on an old skirt with an elastic waistband that's all stretched out. Right after Seamus lost his pants, I felt something funny and realized my skirt had fallen down to my knees! And there were people walking right behind me! We went to dinner and I had forgotten about it (I don't how I could) but when we walked back to the station, it happened again! I guess you can call us the Flashing Colemans.

Last week was looong. It started out with James being stuck in bed for two days with the stomach flu which he then passed on to me. Seamus may have also gotten it but it's so hard to tell if it was a bug or his GI stuff acting up. He never really complained, but he never does. He's had a runny nose all week so we're crossing our fingers it doesn't turn into a cough.

Tuesday was pajama day at school and Thursday was picture day. On Friday, he had a Wii date with his friend Zoe. It's like a drug he wants to share with all his friends.

Saturday night was the big Poker tournament for Seamus' nursery school. I've seen poker on tv but have never played so I wasn't expecting too much. Guess what? I won the whole thing!! Seamus was so impressed and loves the trophy.

Sunday we went to a birthday party with all his friends from school at "Pump It Up", one of those places with all the moon bounces and slides. Seamus absolutely loved it but I spent my time being a nervous wreck chasing him around with hand sanitizer.

I guess I'm a little down today because being in those situations is always a reminder to me that Seamus is different than most kids. He can't just run and play without worrying about germs and he couldn't have the pizza and cake because of his food allergies. Also, parents were talking about summer camp at the nursery school and I don't think Seamus can do that either. They stay out all day playing in the sand box and water table which are both breeding grounds for mold. And forget about getting dehydrated and running around in a bathing suit with his feeding tube sticking out.

I'm sorry, I've said this blog is supposed to be about recording the good times but for some reason today, I'm having a hard time with that. I really do recognize how lucky I am. Seamus couldn't be a happier little kid and once I get home and see him, things will be better. They always are.

We spent almost all weekend at home. I don't think Seamus is feeling up to par yet. Yesterday, he and I were going to have an adventure to see the National Christmas Tree by the White House. I thought he'd be all excited to see the "giant tree" but he really just wanted to stay home and play with his cars and the "tunnel" our builder gave him from the roll of flooring (it's like a 6 foot long paper towel tube.)

Right before we were to leave, he was fussing around so I warned him "If you don't get ready right now, we won't go see the tree." His response was "Okay, we won't go." I really wanted to see it but what can you say to that.

A little while later, James asked him if he was going on an adventure with Mommy and he said "I'll meet her there." James said "You might get lost if you don't go together." Seamus came and found me and said "Mommy, you don't have to go by yourself. I'll come with you," like he was doing me a favor, which I guess actually he was.

On the car ride there, he kept saying he was sooo tired. When we were two blocks away from our destination, I looked in the backseat and he was out like a light so I headed home.

So much for our big adventure.

Today was a good day. We started out getting our Seamus' new playroom all organized. He was a big help and loves to help vacuum. The house is finally starting to get in order.

Our friends from music class, Isabel, Sam, and Gigi, came over this afternoon for a playdate. I'm very proud of Seamus for being so good at sharing his toys. He even gave one of his old baby dolls to Isabel's little brother, Oliver.

Then we all went to our town's Holiday Festival. Everybody got their faces painted (Seamus got a nice Xmas tree on his cheek) and we saw the big guy. Seamus had a lot to tell him and just want on and on but Santa wasn't too interested. He barely said a word to any of the kids and kept taking off his beard. What the heck, Santa? Seamus didn't notice his lack of enthusiasm and thought he was just great.

We also had been invited to an Xmas party Johns Hopkins puts on at the airport with Santa flying in but Seamus wasn't up for it. It's a big deal, someone has to actually nominate you from the hospital but he's still complaining about his tummy hurting and the blockage is getting worse so we didn't want to go too far from home. His cold has also gotten worse and lots of the kids at the party are really sick so I didn't want to expose them to anything.

Tomorrow we're going to try to bake some cookies and gingerbread but I think we'll be doing a lot of resting too.

CF Appt

On Friday, Seamus had his CF appointment. Things are going pretty well, his chest sounded clear even though he seems to have a cold and he also has an ear infection. Seamus is so used to living in pain that he never complains. I did think something was funny when he said on Thursday that Crabby Patty's ear hurt. I asked him if Seamus' ear hurt too and he said "Noooo, Crabby Patty's ear hurt" in a tone that meant he thought I was nuts.

She wasn't too concerned about nursery school yet but does want to keep an eye on things. Seamus had just finished a round of antibiotics for the last cold when he started sniffling again. If it turns into a hacking cough kind of a cold that lingers, we will need to re-evaulate school.

They are a little concerned about his weight. His weight went down but he gained a half an inch so his BMI is going down. Not a good sign. We will need to increase his night feeds if this continues because there is no way he's going to make up the calories by eating. The kid just has no interest, except for french fries.

On a very happy note, Miss Terri's son did not actually pass away. There was some miscommunication at nursery school. Apparently, he came extremely close but they were able to revive him. He is in critical condition, but doing okay.