Tuesday, December 28, 2010
Results
So I talked to Marilyn (our nurse at ALMC) today. The culture results are in. The results are negative - nothing was found in his bm's. So that closes that one out. I also talked to Vicki yesterday. (We had to order more enzymes but we had to have her fax in the prescription because of his increased dosage.) I told her about the appointment on Thursday and how I was waiting on the test results and that the x-rays only showed that his abdomen is distended because of gas, which we already knew, but there is no blockage. Based on what Vicki told me, with the stool cultures coming back negative, we can pretty much chalk it up to the Omnicef (antibiotics) that he's on right now, because they can cause stomach flu-like symptoms. He's on those until Thursday since all antibiotics for our little CFer have to be a minimum of 14 days. By Monday, Vicki thinks, Saxon should be back to normal with eating. Since he's still pooping, our big concern is keeping the weight on him. There's no way he can be having daily poops with barely eating anything and keep up any weight gain. We really don't want to go with a feeding tube, so we need to figure out WHAT is going on!!!!
Friday, December 24, 2010
Christmas Eve....
The kids are tucked away in bed, waiting for Santa to come as they sleep, excited to see all the toys and goodies they've been brought.... They deserve it... They're good kids.....
Saxon is not back to 100%.... We had an appointment yesterday at the ALMC clinic. Vicki told us that if his appetite wasn't back and if he was still having bad gas and irregular bowel movements, we would need to take him in. I tried to get in to see Dr Ulrich, but he wasn't available, so we were referred to see the PA.
The abdominal x-ray showed his abdomen was distended from gas. Nothing else seemed to be abnormal, and his temperature was normal. Andy, the PA, requested a stool sample, which had to be refrigerated and be brought back. We were SURE to bring it back right away this morning!! I didn't want that stinky poop in my fridge!!!! I feel bad for whoever has to deal with that in the lab -- I wouldn't wanna be the one who opens that container!! I have built up a tolerance for the CF smell, but even I was gagging when taking that sample!!! So that's some potent poo!! lol!! In the meantime, Vicki wants Sax on Miralax through the new year....
Tonight Sax did eat some ice cream. I guess that's better than nothing. And a few cookies. Since he's not eating much, I'd rather him eat that than nothing.... I'm hoping we get some answers when the test results come back...... and that he doesn't lose any weight in the meantime... But until then, we're going to try to have a good Christmas.
(He was excited to open his Christmas Eve gift though!! A train from Raine, after they sprinkled reindeer food out in the yard)
Saxon is not back to 100%.... We had an appointment yesterday at the ALMC clinic. Vicki told us that if his appetite wasn't back and if he was still having bad gas and irregular bowel movements, we would need to take him in. I tried to get in to see Dr Ulrich, but he wasn't available, so we were referred to see the PA.
The abdominal x-ray showed his abdomen was distended from gas. Nothing else seemed to be abnormal, and his temperature was normal. Andy, the PA, requested a stool sample, which had to be refrigerated and be brought back. We were SURE to bring it back right away this morning!! I didn't want that stinky poop in my fridge!!!! I feel bad for whoever has to deal with that in the lab -- I wouldn't wanna be the one who opens that container!! I have built up a tolerance for the CF smell, but even I was gagging when taking that sample!!! So that's some potent poo!! lol!! In the meantime, Vicki wants Sax on Miralax through the new year....
Tonight Sax did eat some ice cream. I guess that's better than nothing. And a few cookies. Since he's not eating much, I'd rather him eat that than nothing.... I'm hoping we get some answers when the test results come back...... and that he doesn't lose any weight in the meantime... But until then, we're going to try to have a good Christmas.
(He was excited to open his Christmas Eve gift though!! A train from Raine, after they sprinkled reindeer food out in the yard)
 |
| Spreading reindeer food for Rudolph |
Tuesday, December 21, 2010
(Hoping for) A Merry Christmas
Well, Saxy went back on antibiotics on Thursday. He was getting pretty congested and had a lot of green nasal discharge. He was breathing pretty loud at night and was running a low grade fever too. Not fun!!! He's on Omniceph, which seems to work pretty good. We have to get it refilled about 10 days after getting it filled because once it's mixed, it's only good for 10 days. He seemed to be feeling better after only 2 days, so that's a positive sign!!
But over the weekend, he started acting different.... We went shopping on Sunday, and he was getting crabby every time he passed gas. And it's large amounts of gas, like an adult would pass. It seems to be hurting him. He hasn't been having as many bm's since we upped his enzymes, which he's not supposed to, but they have been VERY large. He tells us he 'pooped' every time he gasses, and he cries. He cries in pain for hours, and is inconsolable. I called Vicki before doing anything since we can't mix meds with everything he's on already. His Zantac should be taking care of the gas.... Vicki thinks that he's not completely emptying his bowels, so back on a regular dose of Miralax to help move things along. I'm supposed to call Vicki back in the morning to let her know how things are going. If he's still gassy and upset a lot, we may have to take him in to have an abdominal x-ray to make sure there's no blockage. We will be able to do that here with Dr Ulrich, our regular doctor.
Here's to hoping we don't have spend Christmas at or in the hospitals!!!
But over the weekend, he started acting different.... We went shopping on Sunday, and he was getting crabby every time he passed gas. And it's large amounts of gas, like an adult would pass. It seems to be hurting him. He hasn't been having as many bm's since we upped his enzymes, which he's not supposed to, but they have been VERY large. He tells us he 'pooped' every time he gasses, and he cries. He cries in pain for hours, and is inconsolable. I called Vicki before doing anything since we can't mix meds with everything he's on already. His Zantac should be taking care of the gas.... Vicki thinks that he's not completely emptying his bowels, so back on a regular dose of Miralax to help move things along. I'm supposed to call Vicki back in the morning to let her know how things are going. If he's still gassy and upset a lot, we may have to take him in to have an abdominal x-ray to make sure there's no blockage. We will be able to do that here with Dr Ulrich, our regular doctor.
Here's to hoping we don't have spend Christmas at or in the hospitals!!!
Sunday, December 12, 2010
Living in MinneSNOWta!!
First blizzard of the year - and a full-fledged one at that!!! It started about 7pm Friday night with rain and freezin rain and switched over Saturday morning. We ended up with around 8 inches of snow between about 7am Saturday morning and lasted until the wee hours of Sunday morning. Areas about an hour north of us and areas an hour east of us ended up with 15+ inches. Daddy had a fun time trying to dig us out today - we couldn't even open the back door because the snow was part way up the door!! And, as luck would have it, our snowblowers are not working!! He got us dug out with the help of the neighbor's snowblower and the other neighbor's nephew.
The kids and I went grocery shopping on Friday after Raine got out of school - and it was CRAZY already at 3pm!! We needed milk, eggs, bread, potatoes, and some snacks- ya know, the normal stuff - but the milk and bread were about sold out, not to mention the bottled water!!! (what happened to the days of just melting snow during a blizzard? or filling empty milk jugs with water??) Sax was really excited since we actually got one of the kid carts (for the first time). I put a bag of taters in it right away so he wouldn't tip it over going around corners!! Just had to be careful, though, cuz he had his own ideas of what he wanted to get....
Saturday the kids spent the day playing together pretty well, and Saxy clung to Daddy a lot. Daddy woke up early and wasn't feeling too well. Mommy was sick all day, so spent a lot of the day sleeping, or trying too. Stomach bug.... not fun!! It's a shame it was too cold to go out and play in it today!! Our high temp was 0 degrees with a -15 windchill - not ideal for the kiddos especially since Sax won't keep his hat or mittens on!! Maybe later this week we can get out and play - it's supposed to get up to 18 by Wednesday!! If I can only find a way to keep him bundled up.... Hmmmm.....
The kids and I went grocery shopping on Friday after Raine got out of school - and it was CRAZY already at 3pm!! We needed milk, eggs, bread, potatoes, and some snacks- ya know, the normal stuff - but the milk and bread were about sold out, not to mention the bottled water!!! (what happened to the days of just melting snow during a blizzard? or filling empty milk jugs with water??) Sax was really excited since we actually got one of the kid carts (for the first time). I put a bag of taters in it right away so he wouldn't tip it over going around corners!! Just had to be careful, though, cuz he had his own ideas of what he wanted to get....
Saturday the kids spent the day playing together pretty well, and Saxy clung to Daddy a lot. Daddy woke up early and wasn't feeling too well. Mommy was sick all day, so spent a lot of the day sleeping, or trying too. Stomach bug.... not fun!! It's a shame it was too cold to go out and play in it today!! Our high temp was 0 degrees with a -15 windchill - not ideal for the kiddos especially since Sax won't keep his hat or mittens on!! Maybe later this week we can get out and play - it's supposed to get up to 18 by Wednesday!! If I can only find a way to keep him bundled up.... Hmmmm.....
Saturday, December 11, 2010
My heart aches...
Why do bad things happen to good people?? Why do thoughts cloud my mind and try to drive me to insanity?? Why must there be so much pain?? Why can't we do more to protect our children??
My thoughts have been driving me crazy lately... just reflecting on so many things that have been happening. It makes me think. I think the thoughts I don't want to think. I think the thoughts that scare me most. I hate reality. I hate feeling helpless. Even more, I hate being helpless.
My heart aches because of these thoughts. My heart bleeds for others who are suffering.
Why is the world so addicted to others' pain?
Why is the world so fascinated with death and the end of the world?
So much of our lives are really NOT our lives. So much of our lives are outside of our control. When you really think about it, there is so little we can control. It's out of our hands.
I hate not being in control. I'm a fighter. My family is a family of fighters. We will not give up. We will not give in.
I am so discouraged and my heart is aching for those I know, even though I don't actually know them. I see how they suffer. I can feel their pain. I can't imagine all they are going through, but I feel for them. I cry for them.
I feel for the parents whose children have lost their battles. I feel for the parents sitting beside their children as they battle for their lives. I feel for the parents who are battle their own health wars, but still must put up the brave front to put their children's needs first. Some of these parents will be reading this... You know who you are. You know what I'm talking about.
There are times when we need a timeout. There are times when these demands take their toll on the parents. It takes a toll on the kids too when Mommy and Daddy get stressed out.... We can't be the best parents we can be if we don't take care of ourselves too..... Sometimes we lose track of the whole picture, the bigger picture.... but what is the bigger picture?
The panic attacks have been coming back again. In full force. It's hard to keep them down. Maybe it's this time of year.... Maybe it's because I know of the stress that comes with this weather, and the stress that comes with the holidays, and the stress that comes with winter illnesses... Maybe it's just all in my head and I'm finally losing my mind....
Some days I am just in awe while watching my kids. To think, I gave them life. I snuggle with them and hold them close. I watch them sleep. I watch my husband sleep. I love them all so much, I don't know if they know how much. When my Saxy is sleeping on my lap, I just snuggle him so close. When Raine falls asleep against my side, I want to wrap my arms so tightly around her so tight and never let go. They both are growing so fast.... too fast....
I don't know if my husband knows how grateful I am for him or how much I love him. I try to tell him, but it's so hard to find the right words. The past (almost) 7 years, he has been one of the best things in my life!! There are many things, particularly in the past 3 years, that I don't think I would have made it through without him, without his support. I know it's hard for him at times too, and he tries so hard not to show it. And I know there will be many more difficult times in our future. But with him, I can take on anything.
At least, I hope I can.
I'll admit it. I am scared.
I read some of the case studies for the new medications. I read about treatment plans for CFers with different gene mutations. I read about g-tubes, picc lines, nebulizers, hospital stays, surgeries, lung transplants, colds that turn to pneumonia in the blink of an eye. We have gone through some of these. We know how fast things can start to go downhill. We know how fast it can all snowball. We know how fortunate we are to have Dr Ulrich's cell phone number for serious/emergency situations. But this doesn't decrease my fears. Every cough, every cold, fills my heart with dread.
Too many children are losing their battle with CF. The average lifespan is too damn low. I'm not ready to lose my son. I know that no one is ever ready, but I'll be damned if I'm not going to do everything in my power to fight this disease every step of the way. If it comes down to me giving my son one of my own lungs, I wouldn't even hesitate. It's sad that so many others won't give up their organs even in death. Those lungs aren't going to do anyone any good buried and rotting in the ground!!
For now, I'm going to be thankful. Or the best I can be.
I'm going to fight tooth and nail to keep my son alive and beat this disease.
I'm going to appreciate every day that my children are in good health.
I'm not going to take my children or my husband for granted.
I'm not going to give a damn what anyone else thinks - I'm going to do what's right for my kids and their health. Don't be surprised if we don't stick around if someone is sick or has a cold, or reeks of cigarette smoke, or if the temperature is too hot. I have to do what is right for my kids. And I'm not going to bring them around others when they're sick.
Don't use guilt trips on me - I'm done with them and they're not going to work.
Don't play my children against me or try to turn them against me. When the time comes, they will understand why we do what we do.
I'm trying my best. That's the best I can do.
I've said it before.
I don't want your sympathy.
I don't want your pity.
I want your understanding, support, and love.
And I don't think that's too much to ask for.
My thoughts have been driving me crazy lately... just reflecting on so many things that have been happening. It makes me think. I think the thoughts I don't want to think. I think the thoughts that scare me most. I hate reality. I hate feeling helpless. Even more, I hate being helpless.
My heart aches because of these thoughts. My heart bleeds for others who are suffering.
Why is the world so addicted to others' pain?
Why is the world so fascinated with death and the end of the world?
So much of our lives are really NOT our lives. So much of our lives are outside of our control. When you really think about it, there is so little we can control. It's out of our hands.
I hate not being in control. I'm a fighter. My family is a family of fighters. We will not give up. We will not give in.
I am so discouraged and my heart is aching for those I know, even though I don't actually know them. I see how they suffer. I can feel their pain. I can't imagine all they are going through, but I feel for them. I cry for them.
I feel for the parents whose children have lost their battles. I feel for the parents sitting beside their children as they battle for their lives. I feel for the parents who are battle their own health wars, but still must put up the brave front to put their children's needs first. Some of these parents will be reading this... You know who you are. You know what I'm talking about.
There are times when we need a timeout. There are times when these demands take their toll on the parents. It takes a toll on the kids too when Mommy and Daddy get stressed out.... We can't be the best parents we can be if we don't take care of ourselves too..... Sometimes we lose track of the whole picture, the bigger picture.... but what is the bigger picture?
The panic attacks have been coming back again. In full force. It's hard to keep them down. Maybe it's this time of year.... Maybe it's because I know of the stress that comes with this weather, and the stress that comes with the holidays, and the stress that comes with winter illnesses... Maybe it's just all in my head and I'm finally losing my mind....
Some days I am just in awe while watching my kids. To think, I gave them life. I snuggle with them and hold them close. I watch them sleep. I watch my husband sleep. I love them all so much, I don't know if they know how much. When my Saxy is sleeping on my lap, I just snuggle him so close. When Raine falls asleep against my side, I want to wrap my arms so tightly around her so tight and never let go. They both are growing so fast.... too fast....
I don't know if my husband knows how grateful I am for him or how much I love him. I try to tell him, but it's so hard to find the right words. The past (almost) 7 years, he has been one of the best things in my life!! There are many things, particularly in the past 3 years, that I don't think I would have made it through without him, without his support. I know it's hard for him at times too, and he tries so hard not to show it. And I know there will be many more difficult times in our future. But with him, I can take on anything.
At least, I hope I can.
I'll admit it. I am scared.
I read some of the case studies for the new medications. I read about treatment plans for CFers with different gene mutations. I read about g-tubes, picc lines, nebulizers, hospital stays, surgeries, lung transplants, colds that turn to pneumonia in the blink of an eye. We have gone through some of these. We know how fast things can start to go downhill. We know how fast it can all snowball. We know how fortunate we are to have Dr Ulrich's cell phone number for serious/emergency situations. But this doesn't decrease my fears. Every cough, every cold, fills my heart with dread.
Too many children are losing their battle with CF. The average lifespan is too damn low. I'm not ready to lose my son. I know that no one is ever ready, but I'll be damned if I'm not going to do everything in my power to fight this disease every step of the way. If it comes down to me giving my son one of my own lungs, I wouldn't even hesitate. It's sad that so many others won't give up their organs even in death. Those lungs aren't going to do anyone any good buried and rotting in the ground!!
For now, I'm going to be thankful. Or the best I can be.
I'm going to fight tooth and nail to keep my son alive and beat this disease.
I'm going to appreciate every day that my children are in good health.
I'm not going to take my children or my husband for granted.
I'm not going to give a damn what anyone else thinks - I'm going to do what's right for my kids and their health. Don't be surprised if we don't stick around if someone is sick or has a cold, or reeks of cigarette smoke, or if the temperature is too hot. I have to do what is right for my kids. And I'm not going to bring them around others when they're sick.
Don't use guilt trips on me - I'm done with them and they're not going to work.
Don't play my children against me or try to turn them against me. When the time comes, they will understand why we do what we do.
I'm trying my best. That's the best I can do.
I've said it before.
I don't want your sympathy.
I don't want your pity.
I want your understanding, support, and love.
And I don't think that's too much to ask for.
Wednesday, December 8, 2010
The Holidays are coming!!
"It's beginning to look a lot like Christmas" and feel like it too!! This week it finally starting looking more like Christmas. We got 4+ inches of snow on Friday night into Saturday morning - a good excuse to stay home!! Mommy did have to go to class on Saturday, but it was just across town, which was ok. Daddy tried taking Saxy and Raine outside to play while he shoveled. Sax loved the snow, but would not keep his mittens and hat on, so he had to go back into the house :-( I'm really hoping we're going to be able to get him to keep them on soon so we can go sledding and build snowmen.
Sax has developed a love for trains - taking after his daddy! Raine has a Thomas the Train wooden set, and the two of them play so nicely with them!!! The first words out of his mouth in the morning "Train!! Train!!" We have to actually put the trains into the basement to get him to do anything!! But it's nice that the kids can play together nicely with something!!
Sax has developed a love for trains - taking after his daddy! Raine has a Thomas the Train wooden set, and the two of them play so nicely with them!!! The first words out of his mouth in the morning "Train!! Train!!" We have to actually put the trains into the basement to get him to do anything!! But it's nice that the kids can play together nicely with something!!
This past weekend was the Toy Train Show at the mall... both the kids loved it so much!! Raine looks forward to it every year, and now that Saxon is old enough, he gets pretty excited!! We wandered through a couple of times and looked at all of the elaborate displays... and it was officially decided that Saxon needs some of his own trains to play with instead of just his sister's. Raine picked out a few pieces, with the help of Daddy. We buy a lot from one of the vendors there, and he always has a gift for the kids with our purchase. In the past, Raine has gotten plain train cars that she can paint herself - one of which Daddy painted for her. This year, Saxon got the gift - a Thomas engine that matches the one Raine has. Now they each have their own, and couldn't be happier!!
Tuesday saw Saxon and I making a trip to Mayo all by ourselves. Daddy went in to work late so that he could take Raine to school at 8. Mommy and Saxy had to be at the ENT at 9 am for a checkup with Stephanie, Dr Cofer's nurse. The appointment was to check to see if his ear infection had cleared up or not in his left ear, and to see the progress in his right ear and determine if the tube would need to be replaced.
And the verdict is.......
NO SURGERY!!!! The left ear was all clear of infection, and there was nothing draining in his right. There was just the residual hole from where the tube had come out. But there was no drainage visible either!! Such GOOD news!!! Saxon's lymph nodes in his neck are still a little swollen, but Stephanie said that is nothing to worry about. She said she wants to see Sax in 4 months or sooner, so we have decided to schedule his ENT checkups at the same time we do his CF checkups to save a trip.
So, in the spirit of the season, here's some of the things we're thankful for this year:
- Good health throughout our home
- Only 1 surgery for the year for Saxy
- Daddy being SO AMAZING that Mommy can stay home to take care of the kids
- Family and friends that have stood by us through all the difficult times in the past year
- A wonderful daughter who is so helpful to Mommy and Daddy
- Terrific doctors that actually care about our family
- A much-needed getaway for the family
- Daddy having plenty of work at the shop
- Mommy's business filling in the gaps
- A SUPER supportive CF community
Now to pray that we make the rest of year as uneventful as it has been so far.......
Thursday, November 25, 2010
The Next Round?
Today was a full - and BUSY - day for house hold!! First a birthday shout out to my mom (Saxy and Raine's Nana). Raine is in bed and Sax is about to snooze - we just got home from supper with the fam.
Our first appointment was with the ENT. Dr Cofer was not there today, but our appointment was with one of her CNPs, Stephanie. We told her about our concerns with Saxon's ears - how he kept putting his fingers into his ears when we do his vest treatments and how he says that his ear hurts. We told Stephanie about his 2 ear infections back to back. She looked in his ears and decided we needed to go to another room where they could get the microscope out to look into his ear.
It was kind of cool. She looked in his left ear first. Everything she could see, we could see on the TV screens mounted over the table. She said she saw some wax in there and did the best to scrape it out. She was having some trouble looking around the bend in his ear and thought his tube was actually receding into his ear canal, so she called another doctor, one of Cofer's associates, in to take a look. She didn't get to his right ear before the other doc came in.
Dr Cofer's associate (sorry I don't remember her name) came to look in Saxy's ears. First she looked in the left one - and saw wax. And began scraping it out. And scraped MORE out. And Sax started crying. Then screaming as she got further in. Then she got a probe and a suction hose. And dug deeper. His left tube was COMPLETELY clogged. We watched - and held down our poor crying, screaming little man who was in so much pain, as she cleared the infection (and blood) out of the tube in his ear. His poor ear canal was so red and swollen - the two prior 'minor' ear infections he's had (complete with pus coming out of his ear) had really never gone away - which explained why he was pulling at his ear and why his ear was bothering him during vesting!!! The doctors in Albert Lea said they were going to suction out his ears - and never did...
After they cleaned his left ear, they put some CiproDex drops in his ear. We had those for him before, but since Albert Lea hadn't suctioned out his ear, the drops never got to the tube or the infection to clear it out!! (The drops must be working - he VOLUNTARILY takes them - lays on our laps and asks for drops!!) 5 in his left ear 2 times daily for 7 days. We got by pretty cheap on the drops too!! Instead of having to go to the pharmacy to get another bottle, they gave us the bottle they had used on him.
FINALLY they got around to looking in his right ear. He'd been rubbing at that one a little, but not as much as the left. Again, the doctor found a lot of wax. But she also found that his tube wasn't even in anymore!! 8 months since his surgery and his tube has already come out!! I have to take him back on Dec 7 for a checkup for his ears (2 weeks from now) to see if the infection actually has cleared up and to discuss IF he is going to need another surgery to reinsert the right tube and possibly replace the left. Stephanie was going to plan a consult for Dr Cofer with Dr P and Vicki to discuss the CF aspect of the surgery. This should be fun :-/ But we are under orders of the Mayo ENT department that we are supposed to bypass going to ALMC from now on with ear infections and go straight to Mayo.
I need to get some sleep... I'll finish the update in the am.
Ok, it's 2 days later - busy yesterday getting ready for Thanksgiving and dealing with the nasty weather (freezing rain and sleet!!) plus a bunch of business to take care of before the holiday.
On to the BEST news of the visit - Saxon's weight gain is GREAT!! He's up to 13.7 kg!! Here's a little fun number comparison from his last visit there on Aug 13:
Height: 85.3 cm (27%)
Weight: 11.3 kg (12%)
BMI: 15.53 (21%)
Stats 11/23/10
Height: 88.0 cm (30%)
Weight: 13.7 kg (61%)
BMI: 17.69
He has gained about 5.3 pounds in the last 3 months. The PediaSure is really helping!! His appetite is starting to come back too!! SOOOOOOO happy about that (except, of course, he didn't want to eat any of the Thanksgiving goodies!!) As long as he keeps his weight up, we shouldn't have to worry about a feeding tube or any other food supplements!! We are supposed to try to get him to eat more red meat and other iron-rich foods, though. At his August appointment, they noticed his iron levels had dropped a little, and that is still a concern now. Sax isn't a huge fan of red meat. He does like pork, though - ham, bacon, pork loin, chops.... and of course, hot dogs. I have gotten him to eat seafood in the past, but recent attempts have been fruitless. Daddy has tried giving him tuna, to no avail. I have to avoid it since I am allergic to it :-( One of his favorite breakfasts, Maltomeal, has 60% RDA of iron in 3 tbsp, but he eats more than that when I feed him it!! And I've discovered that raisins, one of his favorite snacks, is also very iron rich!! Usually when I think iron, I think protein and greens (yeah, no luck with the greens!!) so I've been researching other options. I always try to feed him a variety of foods, and whether or not he eats it, he's still given a little of whatever we're having!! Plus a little extra butter, gravy, salt, or whatever else we can add that's full of calories!! They're going to check his iron levels again in a couple months to see if there is any change. I told them this didn't surprise me too much, though, since about every other time I donate blood, and when I was pregnant with both kids, I come up mildly anemic. If his levels don't increase, he'll be put on an iron supplement.
Sax had to have another chest x-ray while we were there - which came back looking fabulous!! Which means the Vest is doing it's job!! :-) Dr P did notice a little bloating and asked if Sax has been gassy, which he has. This lead to poopy discussions, which they have been larger and more frequent, so this lead to a change in his medication. With his snack he will be getting 3-4 Creon 12, with breakfast and lunch he's to get 4 and with supper, he'll get 5 (unless, of course, he has a huge, fat and calorie laden meal for lunch, like Thanksgiving!! We gave him a little of everything - turkey, ham, scalloped corn, green bean casserole, stuffing, mashed potatoes, gravy, and bread, with some pumpkin pie and ice cream for dessert! - and we put extra butter on the bread and the potatoes, and topped the turkey, potatoes, and stuffing with lots of gravy!!)
Our first appointment was with the ENT. Dr Cofer was not there today, but our appointment was with one of her CNPs, Stephanie. We told her about our concerns with Saxon's ears - how he kept putting his fingers into his ears when we do his vest treatments and how he says that his ear hurts. We told Stephanie about his 2 ear infections back to back. She looked in his ears and decided we needed to go to another room where they could get the microscope out to look into his ear.
It was kind of cool. She looked in his left ear first. Everything she could see, we could see on the TV screens mounted over the table. She said she saw some wax in there and did the best to scrape it out. She was having some trouble looking around the bend in his ear and thought his tube was actually receding into his ear canal, so she called another doctor, one of Cofer's associates, in to take a look. She didn't get to his right ear before the other doc came in.
Dr Cofer's associate (sorry I don't remember her name) came to look in Saxy's ears. First she looked in the left one - and saw wax. And began scraping it out. And scraped MORE out. And Sax started crying. Then screaming as she got further in. Then she got a probe and a suction hose. And dug deeper. His left tube was COMPLETELY clogged. We watched - and held down our poor crying, screaming little man who was in so much pain, as she cleared the infection (and blood) out of the tube in his ear. His poor ear canal was so red and swollen - the two prior 'minor' ear infections he's had (complete with pus coming out of his ear) had really never gone away - which explained why he was pulling at his ear and why his ear was bothering him during vesting!!! The doctors in Albert Lea said they were going to suction out his ears - and never did...
After they cleaned his left ear, they put some CiproDex drops in his ear. We had those for him before, but since Albert Lea hadn't suctioned out his ear, the drops never got to the tube or the infection to clear it out!! (The drops must be working - he VOLUNTARILY takes them - lays on our laps and asks for drops!!) 5 in his left ear 2 times daily for 7 days. We got by pretty cheap on the drops too!! Instead of having to go to the pharmacy to get another bottle, they gave us the bottle they had used on him.
FINALLY they got around to looking in his right ear. He'd been rubbing at that one a little, but not as much as the left. Again, the doctor found a lot of wax. But she also found that his tube wasn't even in anymore!! 8 months since his surgery and his tube has already come out!! I have to take him back on Dec 7 for a checkup for his ears (2 weeks from now) to see if the infection actually has cleared up and to discuss IF he is going to need another surgery to reinsert the right tube and possibly replace the left. Stephanie was going to plan a consult for Dr Cofer with Dr P and Vicki to discuss the CF aspect of the surgery. This should be fun :-/ But we are under orders of the Mayo ENT department that we are supposed to bypass going to ALMC from now on with ear infections and go straight to Mayo.
I need to get some sleep... I'll finish the update in the am.
Ok, it's 2 days later - busy yesterday getting ready for Thanksgiving and dealing with the nasty weather (freezing rain and sleet!!) plus a bunch of business to take care of before the holiday.
On to the BEST news of the visit - Saxon's weight gain is GREAT!! He's up to 13.7 kg!! Here's a little fun number comparison from his last visit there on Aug 13:
Height: 85.3 cm (27%)
Weight: 11.3 kg (12%)
BMI: 15.53 (21%)
Stats 11/23/10
Height: 88.0 cm (30%)
Weight: 13.7 kg (61%)
BMI: 17.69
He has gained about 5.3 pounds in the last 3 months. The PediaSure is really helping!! His appetite is starting to come back too!! SOOOOOOO happy about that (except, of course, he didn't want to eat any of the Thanksgiving goodies!!) As long as he keeps his weight up, we shouldn't have to worry about a feeding tube or any other food supplements!! We are supposed to try to get him to eat more red meat and other iron-rich foods, though. At his August appointment, they noticed his iron levels had dropped a little, and that is still a concern now. Sax isn't a huge fan of red meat. He does like pork, though - ham, bacon, pork loin, chops.... and of course, hot dogs. I have gotten him to eat seafood in the past, but recent attempts have been fruitless. Daddy has tried giving him tuna, to no avail. I have to avoid it since I am allergic to it :-( One of his favorite breakfasts, Maltomeal, has 60% RDA of iron in 3 tbsp, but he eats more than that when I feed him it!! And I've discovered that raisins, one of his favorite snacks, is also very iron rich!! Usually when I think iron, I think protein and greens (yeah, no luck with the greens!!) so I've been researching other options. I always try to feed him a variety of foods, and whether or not he eats it, he's still given a little of whatever we're having!! Plus a little extra butter, gravy, salt, or whatever else we can add that's full of calories!! They're going to check his iron levels again in a couple months to see if there is any change. I told them this didn't surprise me too much, though, since about every other time I donate blood, and when I was pregnant with both kids, I come up mildly anemic. If his levels don't increase, he'll be put on an iron supplement.
Sax had to have another chest x-ray while we were there - which came back looking fabulous!! Which means the Vest is doing it's job!! :-) Dr P did notice a little bloating and asked if Sax has been gassy, which he has. This lead to poopy discussions, which they have been larger and more frequent, so this lead to a change in his medication. With his snack he will be getting 3-4 Creon 12, with breakfast and lunch he's to get 4 and with supper, he'll get 5 (unless, of course, he has a huge, fat and calorie laden meal for lunch, like Thanksgiving!! We gave him a little of everything - turkey, ham, scalloped corn, green bean casserole, stuffing, mashed potatoes, gravy, and bread, with some pumpkin pie and ice cream for dessert! - and we put extra butter on the bread and the potatoes, and topped the turkey, potatoes, and stuffing with lots of gravy!!)
 |
| Rochester skyline from 16th floor of clinic |
 |
| Another of Rochester skyline - Daddy looking out window |
 |
| I like butter!!! :-) We're not stopping him!!! |
 |
| He only actually got HALF at a time - but Oooohhhh he was excited!! "Saxy donut!!" |
Hopefully the next couple weeks will be rather uneventful!! I can tell you, we won't be doing any Black Friday shopping!! Mom and the kiddos will be chilling at the house, and Daddy has to work!!
We have so much to be thankful for this year - so many less hospital stays and surgeries and illnesses in our house. We really couldn't ask for more, well, other than a cure!! But here's to being thankful for Good Health!!
 |
| Loves his window perch, especially now that the lights are up!! |
Happy Thanksgiving everyone!!
Sunday, November 21, 2010
Happy Fall!!
Happy Fall to all!! It's in full swing, the cold has set in and is here to stay. I haven't updated in a month, but not much has been happening. Sax has been doing well. He's had 2 ear infections, but that's it. No colds, no coughs. The last few days he's been getting crabby when we nebby and vest him. I think his ears are bothering him a little because he's putting his fingers in his ears or covering his ears when he's been vesting. :-( I have been debating if I should take him in to have his ears checked, but we're going to Mayo on Tuesday for his next series of checkups. We are seeing the ENT, along with all of our normal doctors and nurses. We have to be there by 9, but we may have to leave early. We're being forcasted sleet and freezing rain - I don't know if I'm ready for that!!! Especially with me driving back and forth to Owatonna on Monday nights for my night class... 35 is a BAD one for winter driving!!!
Sax seems to be keeping his weight up pretty well!! He's started eating a little more food, and he LOVES his PediaSure. He's chubbing up a little bit. We have to ask our doctors about his diet - I think we're seeing the dietitian too. The WIC nurse has been telling me not to give him so much butter, that he should be getting more canola oil. I don't think we have anything to worry about with the butter. I'm going to ask about it anyway. I'll post after his appointment on how things go.
I'll leave with a few Halloween pics....
Sax seems to be keeping his weight up pretty well!! He's started eating a little more food, and he LOVES his PediaSure. He's chubbing up a little bit. We have to ask our doctors about his diet - I think we're seeing the dietitian too. The WIC nurse has been telling me not to give him so much butter, that he should be getting more canola oil. I don't think we have anything to worry about with the butter. I'm going to ask about it anyway. I'll post after his appointment on how things go.
I'll leave with a few Halloween pics....
Tuesday, October 12, 2010
Playing catchup!
I've gotten a few days behind again. It feels like a Monday again.
Friday, the 1st, was a good day and a bad day... It was Daddy's birthday, so Mommy and Daddy had a date while Auntie Abbey babysat (and got to try her hand at nebbying and thumping the little man). We went to a movie and out for adult beverages.
The kids were good for Auntie.... in spite of the bad day Saxon had been having... When Mommy was in the bathroom he decided to ride his motorcycle down the back stairs. It's only about 4 stairs, but he bit his lip pretty good. I gave him a popsicle, which helped slow the bleeding. Then another one... and then called the phone nurse. After about 20 minutes it was still bleeding, which I thought was odd since with Raine's it was usually done bleeding within 5 minutes. They told me to bring him in to check it out.... and ended up telling me just to give more popsicles. That's about what I figured, but thought better safe then sorry. He was on antibiotics for his ear infection, so they didn't think he'll need any for his lip. It seems to be healing - just a little swollen still and has a funky white lip scabby on it.
I had to take Saxy in last Monday for a reweigh since his weight was down the week before when we were at the clinic... and drum roll please...datatatatatatata... He's up to his highest weight EVER~ 13.3 kg!!!! WOOHOOO way to go Saxy!! Now just keeping going up up up!!
We got a new family member this week too... 10/10/10 my niece Brooklyn Kori was born. Congrats to my baby sister Abbey!! Saxy will have a cousin pretty close to his own age to play with!!
Friday, the 1st, was a good day and a bad day... It was Daddy's birthday, so Mommy and Daddy had a date while Auntie Abbey babysat (and got to try her hand at nebbying and thumping the little man). We went to a movie and out for adult beverages.
 |
| Showing off Bumbob jammies |
The kids were good for Auntie.... in spite of the bad day Saxon had been having... When Mommy was in the bathroom he decided to ride his motorcycle down the back stairs. It's only about 4 stairs, but he bit his lip pretty good. I gave him a popsicle, which helped slow the bleeding. Then another one... and then called the phone nurse. After about 20 minutes it was still bleeding, which I thought was odd since with Raine's it was usually done bleeding within 5 minutes. They told me to bring him in to check it out.... and ended up telling me just to give more popsicles. That's about what I figured, but thought better safe then sorry. He was on antibiotics for his ear infection, so they didn't think he'll need any for his lip. It seems to be healing - just a little swollen still and has a funky white lip scabby on it.
 |
| Saxy's owie lip |
I had to take Saxy in last Monday for a reweigh since his weight was down the week before when we were at the clinic... and drum roll please...datatatatatatata... He's up to his highest weight EVER~ 13.3 kg!!!! WOOHOOO way to go Saxy!! Now just keeping going up up up!!
 |
| Me and Brooklyn |
Monday, September 27, 2010
Monday - in every sense...
"It's a Monday kind of day." Except today IS Monday. And before it was even Monday, I knew it was not going to be one of the best days.
Sax spent the weekend being quite crabby - wanting to sit on Mommy's lap and wanting to snuggle. He's been having some mild discharge from his left ear - fluid from having his tubes maybe?? I've never seen the discharge as liquid, just as dried waxy nastiness all over his ear and sometimes on his cheek He seemed a bit feverish off and on during the weekend, but never too high. He went to bed with Daddy, but as has been happening quite a bit lately, he insisted on sleeping in our bed. At least, until he fell asleep. When I went to bed about 12:30, I had to move him over to his crib since he falls asleep in my spot.
Raine woke up in the middle of the night last night crying because her ear was hurting - probably about 1130ish. I gave her some ibuprofen and a warm wet rag for her ear. That seemed to help, so I sent her back to bed about midnight. I had a feeling. I knew something was up... it was either going to be a long night or a long day.... Little did I know it was going to start before I was even out of bed!!!
I woke up to Saxon yelling. Then Raine yelling. Saxon throwing toys at me from the crib. Then Saxon out of the crib and Raine yelling at him to get out of her room. And Daddy already at work. Saxon yelling at me because I was trying to get him to lay down with me because I just wasn't ready to take on the challenges of today. Raine yelling at me to get up cuz it's time to go to the doctor. Wait, who's the parent here????
I got up and got the kids ready to go. The kids were wild. We were off to Same Day Clinic - I had called Raine in to school because we had to figure out why her cough wasn't getting better and why her ear was hurting so much. We had to figure out why Sax has been feverish off and on over the weekend, why he's all gunked up, and why his ear is draining out.
For Monday morning Same Day Clinic was PACKED!! We got to go up to Peds to see one of the docs there. She actually knew a little about CF, which helped!! Found out we'd had Sax on the wrong med - we had him on an anti-fungal instead of an antibiotic!! (I guess that's because when I called and asked for a refill on his antibiotic, I was talking to the new pharmacist and I guess he doesn't know as much as the other 2 do.)
Anyway, the verdict after all was said and done: Saxon has an ear infection in his left ear and that's what/why it was draining. He's on ear drops and augmentin. Hopefully this should clear everything up!! He seems to be feeling better - he's LOUD again!! And driving his motorcycle all over. His nose is still running, but it's still more on the clear side, and that's just a fact of life with him..... Raine has an ear infection in her RIGHT ear, and apparently has seasonal allergies now.... but her father did too.... so it shouldn't be too surprising. She's on amoxicillan and Claritin now - funny that it's the same dosage as Saxon's!!
I have to take Sax for a weigh-in on Monday next week. I called Vicki because he has dropped in weight again. On the 13th he was 12.9 kg. Now he's down to 12.3 kg. It would be nice if he would just EAT... do like normal kids do and EAT, especially the fatty foods!! But since he hasn't been feeling good, he's not even really drinking anything, even his PediaSure, the last couple days!! We'll find out Monday what we do next... **sigh** It was good while it lasted....
Here's him with his tired glazed look this afternoon, while fighting with Mommy about naptime......
So it was Monday. Very much a Monday. And I'm glad it's over. Even if tomorrow isn't the best day in the world, it's got one thing going for it!! It's TUESDAY!!
Sax spent the weekend being quite crabby - wanting to sit on Mommy's lap and wanting to snuggle. He's been having some mild discharge from his left ear - fluid from having his tubes maybe?? I've never seen the discharge as liquid, just as dried waxy nastiness all over his ear and sometimes on his cheek He seemed a bit feverish off and on during the weekend, but never too high. He went to bed with Daddy, but as has been happening quite a bit lately, he insisted on sleeping in our bed. At least, until he fell asleep. When I went to bed about 12:30, I had to move him over to his crib since he falls asleep in my spot.
Raine woke up in the middle of the night last night crying because her ear was hurting - probably about 1130ish. I gave her some ibuprofen and a warm wet rag for her ear. That seemed to help, so I sent her back to bed about midnight. I had a feeling. I knew something was up... it was either going to be a long night or a long day.... Little did I know it was going to start before I was even out of bed!!!
I woke up to Saxon yelling. Then Raine yelling. Saxon throwing toys at me from the crib. Then Saxon out of the crib and Raine yelling at him to get out of her room. And Daddy already at work. Saxon yelling at me because I was trying to get him to lay down with me because I just wasn't ready to take on the challenges of today. Raine yelling at me to get up cuz it's time to go to the doctor. Wait, who's the parent here????
I got up and got the kids ready to go. The kids were wild. We were off to Same Day Clinic - I had called Raine in to school because we had to figure out why her cough wasn't getting better and why her ear was hurting so much. We had to figure out why Sax has been feverish off and on over the weekend, why he's all gunked up, and why his ear is draining out.
For Monday morning Same Day Clinic was PACKED!! We got to go up to Peds to see one of the docs there. She actually knew a little about CF, which helped!! Found out we'd had Sax on the wrong med - we had him on an anti-fungal instead of an antibiotic!! (I guess that's because when I called and asked for a refill on his antibiotic, I was talking to the new pharmacist and I guess he doesn't know as much as the other 2 do.)
Anyway, the verdict after all was said and done: Saxon has an ear infection in his left ear and that's what/why it was draining. He's on ear drops and augmentin. Hopefully this should clear everything up!! He seems to be feeling better - he's LOUD again!! And driving his motorcycle all over. His nose is still running, but it's still more on the clear side, and that's just a fact of life with him..... Raine has an ear infection in her RIGHT ear, and apparently has seasonal allergies now.... but her father did too.... so it shouldn't be too surprising. She's on amoxicillan and Claritin now - funny that it's the same dosage as Saxon's!!
I have to take Sax for a weigh-in on Monday next week. I called Vicki because he has dropped in weight again. On the 13th he was 12.9 kg. Now he's down to 12.3 kg. It would be nice if he would just EAT... do like normal kids do and EAT, especially the fatty foods!! But since he hasn't been feeling good, he's not even really drinking anything, even his PediaSure, the last couple days!! We'll find out Monday what we do next... **sigh** It was good while it lasted....
Here's him with his tired glazed look this afternoon, while fighting with Mommy about naptime......
So it was Monday. Very much a Monday. And I'm glad it's over. Even if tomorrow isn't the best day in the world, it's got one thing going for it!! It's TUESDAY!!
Monday, September 20, 2010
The first of the year.....
It was good while it lasted.
About a week and a half ago, Raine started coughing. Then her nose started running. So Thursday, we took her into Urgent Care because her cough was getting worse, it was keeping her up at night, and her nose started running. Just a bad cold. Just postnasal drainage. (one of my LEAST favorite diagnosis!!) At least they gave her some cough syrup with codeine to help her sleep, and Flonase to help with the congestion.
Tuesday night, Saxon's nose had started running a little bit, but it was clear. Maybe it's just allergies? He's on Claritin already..... Wednesday night it was turning a little yellow. By the time we got home from Urgent Care with Sissy, it was yellow-green - the beginnings of an infection. Great. At least there's no additional coughing!!
Until Friday. Mommy woke up with a sore throat and a mild headache - almost a migraine, but not quite as severe. Not at first. Saxon started sounding junky. Mommy decided we're really not going to be going anywhere too much, except Mommy had to work at a show. Sax snuggled with Mommy quite a bit, then when Raine got home, started getting pretty wild. She would go into a coughing fit from rough housing, then he would start coughing and his nose would run. (I'm glad we bought the 3 pack of Kleenex for school so we had the 2 extra boxes at home!!) Mommy's headache was getting worse and worse. Mommy wanted to take a nap, but that wasn't going to happen. Raine went with Mommy to work, and Daddy tried to get the Scrappyman to rest a bit to see if he would feel any better.
Saturday morning.
Raine is barking.... no, she's coughing. Sounds like barking. Her nose is red.... raw. It hurts from blowing it so much.
Mommy has a headache - would have to say it's a sinus headache, still bordering on a migraine. Feeling nauseated. Can't lay down cuz then I can't breathe. Supposed to be going to a welcome home party for my cousin... had to send our regards. My sinuses and throat and body aches almost had me convinced it was the flu. But no fever.
Sax is congested. His nose is running pretty steady now. He's coughing more than normal. His breathing is raspy. He tries to cough, but can't get anything up, or just isn't spitting it out. We added in another thumpy (vest treatment) with another albuterol.
Daddy had to go get more albuterol since we were out. Getting some meds for Mommy and for himself too. We still have an antibiotic on file, so we get that filled for Sax too. Pharmacy calls - no albuterol refills left!! Oh no!! Well, I have doc's cell number - I text him, and minutes later he texts back No Problem! By the time Daddy got to the pharmacy, all the meds are ready to go! The vest was knocking stuff loose. Just really wish he would spit it out.....
Mommy broke down and went to get some mentholated cough drops then took some Sudafed PE. Helped to clear the sinuses a little. Eased the headache a tiny bit....
Saturday night Saxon woke up in the middle of the night. No, didn't wake up. Just started crying. Crying in his sleep. Wouldn't wake up. He was between Mommy and Daddy. Tried calming him. Tried waking him. Eventually he fell back asleep snuggled up against Mommy.
Daddy always gets up too early. Mommy is more of a night owl than an early bird. Daddy was up with the kids and had them eating before Mommy was up. Mommy slept a while longer, trying to get rid of the awful sinus headache. It finally accepted defeat around supper time!! What a LONG 3 days!!
Sunday was just a lazy day all around. Supposed to go to a family reunion, didn't want to let g-g-grandma down, but didn't want to get everyone sick or get the kids sicker or Mommy sicker. We just stayed home. Sax spent the day riding his motorcycle from the living room to the kitchen and back, or snuggling and napping with Mommy, or snuggling with Daddy.
Raine hid in her room playing with her Barbies, happy her brother stayed downstairs. By this evening, everyone seemed to be feeling at least a little bit better. Hoping everyone is feeling better this week and no more trips to the doctor for a while!! Sax has 14 days on his, so we'll see what happens!
About a week and a half ago, Raine started coughing. Then her nose started running. So Thursday, we took her into Urgent Care because her cough was getting worse, it was keeping her up at night, and her nose started running. Just a bad cold. Just postnasal drainage. (one of my LEAST favorite diagnosis!!) At least they gave her some cough syrup with codeine to help her sleep, and Flonase to help with the congestion.
Tuesday night, Saxon's nose had started running a little bit, but it was clear. Maybe it's just allergies? He's on Claritin already..... Wednesday night it was turning a little yellow. By the time we got home from Urgent Care with Sissy, it was yellow-green - the beginnings of an infection. Great. At least there's no additional coughing!!
Until Friday. Mommy woke up with a sore throat and a mild headache - almost a migraine, but not quite as severe. Not at first. Saxon started sounding junky. Mommy decided we're really not going to be going anywhere too much, except Mommy had to work at a show. Sax snuggled with Mommy quite a bit, then when Raine got home, started getting pretty wild. She would go into a coughing fit from rough housing, then he would start coughing and his nose would run. (I'm glad we bought the 3 pack of Kleenex for school so we had the 2 extra boxes at home!!) Mommy's headache was getting worse and worse. Mommy wanted to take a nap, but that wasn't going to happen. Raine went with Mommy to work, and Daddy tried to get the Scrappyman to rest a bit to see if he would feel any better.
Saturday morning.
Raine is barking.... no, she's coughing. Sounds like barking. Her nose is red.... raw. It hurts from blowing it so much.
Mommy has a headache - would have to say it's a sinus headache, still bordering on a migraine. Feeling nauseated. Can't lay down cuz then I can't breathe. Supposed to be going to a welcome home party for my cousin... had to send our regards. My sinuses and throat and body aches almost had me convinced it was the flu. But no fever.
Sax is congested. His nose is running pretty steady now. He's coughing more than normal. His breathing is raspy. He tries to cough, but can't get anything up, or just isn't spitting it out. We added in another thumpy (vest treatment) with another albuterol.
Daddy had to go get more albuterol since we were out. Getting some meds for Mommy and for himself too. We still have an antibiotic on file, so we get that filled for Sax too. Pharmacy calls - no albuterol refills left!! Oh no!! Well, I have doc's cell number - I text him, and minutes later he texts back No Problem! By the time Daddy got to the pharmacy, all the meds are ready to go! The vest was knocking stuff loose. Just really wish he would spit it out.....
Mommy broke down and went to get some mentholated cough drops then took some Sudafed PE. Helped to clear the sinuses a little. Eased the headache a tiny bit....
Saturday night Saxon woke up in the middle of the night. No, didn't wake up. Just started crying. Crying in his sleep. Wouldn't wake up. He was between Mommy and Daddy. Tried calming him. Tried waking him. Eventually he fell back asleep snuggled up against Mommy.
Daddy always gets up too early. Mommy is more of a night owl than an early bird. Daddy was up with the kids and had them eating before Mommy was up. Mommy slept a while longer, trying to get rid of the awful sinus headache. It finally accepted defeat around supper time!! What a LONG 3 days!!
Sunday was just a lazy day all around. Supposed to go to a family reunion, didn't want to let g-g-grandma down, but didn't want to get everyone sick or get the kids sicker or Mommy sicker. We just stayed home. Sax spent the day riding his motorcycle from the living room to the kitchen and back, or snuggling and napping with Mommy, or snuggling with Daddy.
Raine hid in her room playing with her Barbies, happy her brother stayed downstairs. By this evening, everyone seemed to be feeling at least a little bit better. Hoping everyone is feeling better this week and no more trips to the doctor for a while!! Sax has 14 days on his, so we'll see what happens!
Monday, September 13, 2010
What does it all mean??
After some recent incidents in our lives, I've come to realize that I have based this blog on an assumption. In the header, I talk about Saxon being diagnosed with Cystic Fibrosis. But I guess I never really explained what cystic fibrosis IS!
If you're looking for the exact meaning and want to take the time to sort it all out, there is a great website that can explain it all to you. For those who don't want to look it up on your own, I'll help you out a bit.
Cystic fibrosis is an inherited genetic disease. We receive one gene from each of our parents. If a person receives one copy of the mutated gene that causes cf and one good gene, the person is called a cf carrier. If a person receives 2 copies of the mutated gene, one from each parent, the person has cystic fibrosis. In the state of Minnesota, we are fortunate enough that newborns are automatically screened for this and about 50 other genetic defects. If it weren't for the screening, we wouldn't have found out so soon!
The defect in a person such as Saxon causes him to sweat out most of the salt in his body. The mucus in his lungs and organs is very thick and very sticky. It clogs his lungs and blocks his pancreas. As a result, kissing him tastes like kissing a potato chip. His skin tastes salty, especially when he sweats. He often coughs. He is very susceptible to respiratory infections and a simple cold can easily progress into pneumonia. This is why when Sax was in daycare, he was almost always on antibiotics. The clogging of his pancreas is what is causing his weight issues. The mucus doesn't allow his pancreas to release the enzymes needed to break down and absorb his food. This explains why he has so many bowel movements when he was first born - he WASN'T ABLE to absorb what he was eating! The balance of enzymes is very important - too few and he doesn't absorb enough, too many and he gets bound up.
Maybe this will help. A listing of all of his most frequent medications, and what purposes they serve.
Albuterol - What's that? A bronchodilater. It relaxes the muscles in the airways and makes it easier to breathe by increasing the air flow. More commonly used for asthma relief.
How taken? Nebulizer medication
Dosage - 1 vial once daily. When respiratory infections/illnesses/allergies are present, 2-3 vials daily.
Cost? - Approx $9 per month
ABDEK/Vitamax - What's that? Multivitamins. Since so much of his food is not absorbed, these vitamins supplement his daily menu.
How taken? Oral solution
Dosage - 1 ml twice daily
Cost? - Approx $15 per month
Claritin - What's that? An antihistamine. It helps to relieve sneezing, runny nose, and itchy, watery eyes. This medicine is used to treat the symptoms of indoor and outdoor allergies.
How taken? Oral solution
Dosage - 1 tsp once daily
Cost? - Approx $13 per month
Creon 12 - What's that? A pancreatic enzyme preparation consisting of pancrelipase, an extract derived from porcine pancreatic glands. Pancrelipase contains multiple enzyme classes, including porcine-derived lipases, proteases, and amylases. 12,000 USP units of lipase: 38,000 USP units of protease; 60,000 USP units of amylase capsules have a brown opaque cap with imprint "CREON 1212" and a colorless transparent body. The shells contain black iron oxide, gelatin, red iron oxide, sodium lauryl sulfate, titanium dioxide, and yellow iron oxide.
In English please? Basically, it's pig enzymes that Saxon has to take orally every time he eats. The enzymes help him to break down and digest his food, and also helps break down any mucus he swallows (although not completely). They come in 6,000, 12,000, or 24,000 units. They are effective for 40 minutes before he needs to be re-dosed. The dosage is based on weight. He upped to the Creon 12 when he was at 6 of the Creon 6 - less to haul and less capsules to crack open!
How taken? We open the capsule and dump the granules into applesauce (the acid from the applesauce helps the enzymes do their work) and he takes them orally
Dosage - 3 capsules with each meal or snack
Cost? - Approx $800 per month
Exlax - What's that? Stimulant laxative to relieve constipation - taken with Miralax to stimulate bm's.
How taken? Orally - chewed
Dosage - 1/2 piece of chocolate approx 1-2 times per week
Cost? - Approx $6 per box of 24
Miralax - What's that? Laxative to relieve constipation - non stimulant. Taken with Exlax
How taken? Powder added to beverage -orally
Dosage - 17 g approx 1-2 times per week
Cost? - Approx $6-8 for generic
Nasonex - What's that? For adults and children aged 2 years and older, NASONEX® Nasal Spray is approved to treat seasonal (outdoor) and year-round (indoor) nasal allergy symptoms. At least, that's what it's GENERALLY used for!! Saxon has used it per the referral of Dr Cofer, our ENT, since he was 1 to keep his nasal polyps from reforming.
How taken? Inhaled - Nasal spray
Dosage - 1 spray per nostril, 1x per day
Cost? - $200+
PediaSure - What's that? A vanilla shake that provides protein, vitamins, and minerals needed for healthy growth and development.
How taken? Orally - in place of milk in sippy's
Dosage - 3 cans per day
Cost? - Approx $50 for a case of 24
Pulmozyme - What's that? A synthetic protein that breaks down excess DNA in the pulmonary secretions of people with cystic fibrosis. Pulmozyme is used to improve lung function in people with cystic fibrosis by thinning pulmonary secretions and reducing the risk of respiratory tract infections.
In English please? It breaks down the film of dead white blood cells left behind after CPT and mucus clearance, and thins out the mucus still present to help the CFer cough it up.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily
Cost? - $1600-$1900 per month
Tobramycin - What's that? Tobramycin, better known as TOBI, is an aminoglycoside antibiotic used to treat or prevent certain kinds of bacterial infections in the lungs. It will not work for colds, flu, or other viral infections. Often used for treatment of pneumonia.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily when ill with pneumonia/respiratory infection
Cost? - $4,000+ per month
Zantac - What's that? A type of antihistamine that blocks the release of stomach acid. It is used to treat stomach or intestinal ulcers. It can relieve ulcer pain and discomfort, and the heartburn from acid reflux. Most CFers suffer from some acid reflux
How taken? Orally
Dosage - 1 ml twice daily
Cost? - unsure - once I know the cost of it, I'll update this!!
I'm working on a page of "key terms" which should be coming soon!
Any other questions you are curious about, just ask!!
The only stupid question is the question not asked!!!
If you're looking for the exact meaning and want to take the time to sort it all out, there is a great website that can explain it all to you. For those who don't want to look it up on your own, I'll help you out a bit.
Cystic fibrosis is an inherited genetic disease. We receive one gene from each of our parents. If a person receives one copy of the mutated gene that causes cf and one good gene, the person is called a cf carrier. If a person receives 2 copies of the mutated gene, one from each parent, the person has cystic fibrosis. In the state of Minnesota, we are fortunate enough that newborns are automatically screened for this and about 50 other genetic defects. If it weren't for the screening, we wouldn't have found out so soon!
The defect in a person such as Saxon causes him to sweat out most of the salt in his body. The mucus in his lungs and organs is very thick and very sticky. It clogs his lungs and blocks his pancreas. As a result, kissing him tastes like kissing a potato chip. His skin tastes salty, especially when he sweats. He often coughs. He is very susceptible to respiratory infections and a simple cold can easily progress into pneumonia. This is why when Sax was in daycare, he was almost always on antibiotics. The clogging of his pancreas is what is causing his weight issues. The mucus doesn't allow his pancreas to release the enzymes needed to break down and absorb his food. This explains why he has so many bowel movements when he was first born - he WASN'T ABLE to absorb what he was eating! The balance of enzymes is very important - too few and he doesn't absorb enough, too many and he gets bound up.
Maybe this will help. A listing of all of his most frequent medications, and what purposes they serve.
Albuterol - What's that? A bronchodilater. It relaxes the muscles in the airways and makes it easier to breathe by increasing the air flow. More commonly used for asthma relief.
How taken? Nebulizer medication
Dosage - 1 vial once daily. When respiratory infections/illnesses/allergies are present, 2-3 vials daily.
Cost? - Approx $9 per month
ABDEK/Vitamax - What's that? Multivitamins. Since so much of his food is not absorbed, these vitamins supplement his daily menu.
How taken? Oral solution
Dosage - 1 ml twice daily
Cost? - Approx $15 per month
Claritin - What's that? An antihistamine. It helps to relieve sneezing, runny nose, and itchy, watery eyes. This medicine is used to treat the symptoms of indoor and outdoor allergies.
How taken? Oral solution
Dosage - 1 tsp once daily
Cost? - Approx $13 per month
Creon 12 - What's that? A pancreatic enzyme preparation consisting of pancrelipase, an extract derived from porcine pancreatic glands. Pancrelipase contains multiple enzyme classes, including porcine-derived lipases, proteases, and amylases. 12,000 USP units of lipase: 38,000 USP units of protease; 60,000 USP units of amylase capsules have a brown opaque cap with imprint "CREON 1212" and a colorless transparent body. The shells contain black iron oxide, gelatin, red iron oxide, sodium lauryl sulfate, titanium dioxide, and yellow iron oxide.
In English please? Basically, it's pig enzymes that Saxon has to take orally every time he eats. The enzymes help him to break down and digest his food, and also helps break down any mucus he swallows (although not completely). They come in 6,000, 12,000, or 24,000 units. They are effective for 40 minutes before he needs to be re-dosed. The dosage is based on weight. He upped to the Creon 12 when he was at 6 of the Creon 6 - less to haul and less capsules to crack open!
How taken? We open the capsule and dump the granules into applesauce (the acid from the applesauce helps the enzymes do their work) and he takes them orally
Dosage - 3 capsules with each meal or snack
Cost? - Approx $800 per month
Exlax - What's that? Stimulant laxative to relieve constipation - taken with Miralax to stimulate bm's.
How taken? Orally - chewed
Dosage - 1/2 piece of chocolate approx 1-2 times per week
Cost? - Approx $6 per box of 24
Miralax - What's that? Laxative to relieve constipation - non stimulant. Taken with Exlax
How taken? Powder added to beverage -orally
Dosage - 17 g approx 1-2 times per week
Cost? - Approx $6-8 for generic
Nasonex - What's that? For adults and children aged 2 years and older, NASONEX® Nasal Spray is approved to treat seasonal (outdoor) and year-round (indoor) nasal allergy symptoms. At least, that's what it's GENERALLY used for!! Saxon has used it per the referral of Dr Cofer, our ENT, since he was 1 to keep his nasal polyps from reforming.
How taken? Inhaled - Nasal spray
Dosage - 1 spray per nostril, 1x per day
Cost? - $200+
PediaSure - What's that? A vanilla shake that provides protein, vitamins, and minerals needed for healthy growth and development.
How taken? Orally - in place of milk in sippy's
Dosage - 3 cans per day
Cost? - Approx $50 for a case of 24
Pulmozyme - What's that? A synthetic protein that breaks down excess DNA in the pulmonary secretions of people with cystic fibrosis. Pulmozyme is used to improve lung function in people with cystic fibrosis by thinning pulmonary secretions and reducing the risk of respiratory tract infections.
In English please? It breaks down the film of dead white blood cells left behind after CPT and mucus clearance, and thins out the mucus still present to help the CFer cough it up.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily
Cost? - $1600-$1900 per month
Tobramycin - What's that? Tobramycin, better known as TOBI, is an aminoglycoside antibiotic used to treat or prevent certain kinds of bacterial infections in the lungs. It will not work for colds, flu, or other viral infections. Often used for treatment of pneumonia.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily when ill with pneumonia/respiratory infection
Cost? - $4,000+ per month
Zantac - What's that? A type of antihistamine that blocks the release of stomach acid. It is used to treat stomach or intestinal ulcers. It can relieve ulcer pain and discomfort, and the heartburn from acid reflux. Most CFers suffer from some acid reflux
How taken? Orally
Dosage - 1 ml twice daily
Cost? - unsure - once I know the cost of it, I'll update this!!
I'm working on a page of "key terms" which should be coming soon!
Any other questions you are curious about, just ask!!
The only stupid question is the question not asked!!!
Going Up Up Up....
Vicki just called.
I miscalculated.
When we were in Rochester, his weight was 11.3 kg.
Today, his weight was 12.9 kg.
What does that mean?
That means we don't have to go back to Rochester until NOVEMBER!!
That means he is GAINING weight!!
That means he went from being in the 12th percentile for weight, all the way up to the 47th percentile!!
That is HUGE!!
That may not seem like much to some people, but for a little man with CF, that's HUGE!!
It means one less month of doctors.
It means one less day Daddy has to take off work for medical reasons.
It means one less drive to Mayo and exposure to the germs.
It means one more step in the right direction.
TAKE THAT CF!! YOU WILL BE DEFEATED!!
I miscalculated.
When we were in Rochester, his weight was 11.3 kg.
Today, his weight was 12.9 kg.
What does that mean?
That means we don't have to go back to Rochester until NOVEMBER!!
That means he is GAINING weight!!
That means he went from being in the 12th percentile for weight, all the way up to the 47th percentile!!
That is HUGE!!
That may not seem like much to some people, but for a little man with CF, that's HUGE!!
It means one less month of doctors.
It means one less day Daddy has to take off work for medical reasons.
It means one less drive to Mayo and exposure to the germs.
It means one more step in the right direction.
TAKE THAT CF!! YOU WILL BE DEFEATED!!
Busybody Boy
Saxon has been keeping Mommy and Daddy pretty busy lately. He's been constantly GO! GO! GO!! But that's OK!! It helps exercise his lungs. It keeps him healthy. He's got quite a bit of his dad's spitfire in him too!!! Nap time is becoming more difficult as he thinks he will miss out on something if he naps. Yesterday was almost awful in the late afternoon because he REFUSED to slow down. He could barely stand up!! But that wouldn't slow him down!!
I'm just amazed at how fast Saxon is catching on to things. His new favorite kids shows are Umizoomi and Mickey Mouse Clubhouse. He also LOVES watching Monster Jams (monster trucks) when they're on. Last Thursday when Scot got home, Saxon went and climbed up on his lap with a book. It was a Dora book about flying kites. Well, that little stinker was pointing to the pictures telling Daddy exactly what everything was. He's also starting to count!! We've been working on just counting to five right now when he's in his vest doing treatments. When Umizoomi is on and they ask the audience questions - Saxon ANSWERS them!! When it's time to say Super Shapes or Pattern Power, he says it right with them!! When they ask if the shapes fit or if something is right, he will nod yes or shake his head no - and he's RIGHT.... he's a smart little whip!!
Here's a few pictures of him watching Umizoomi and doing the "Umi Shake"
It's so funny watching him do that!! Especially when it's time to "crazy shake" - he usually makes himself dizzy and about falls over!!
He also still has a thing for clothes baskets and Rubbermaid totes. He will dump the clothes or toys out of them so HE can play in them!
Such a silly little man!!
We have temporarily upped Saxon's vest and nebulizer treatments. He's been playing outside quite a bit, and he's been sounding kind of snotty and coughing a little. We pat him on the back to try to get him to cough stuff out, but he can't quite figure out how to get it out. We think it's allergy-related since he's not showing any other signs of being ill and he's not acting any different. We're going to keep an eye on it. If it doesn't clear up by the end of the week, I think I'm going to call Vicki or Dr Ulrich and see about putting him on antibiotics.
Saxon had to go to the doctor today for a one month weigh. He weighed in at 12.5 kg at his last appointment. This time he was at 12.9 kg. I have a call in to Vicki to see if that means we are going in to Mayo in October or if we get to wait until November. I'm also really hoping Saxon decides he's going to start eating more!! He's drinking his 3 PediaSures per day, but he's still not eating too much... It's frustrating. All we can do is keep trying!
I'm just amazed at how fast Saxon is catching on to things. His new favorite kids shows are Umizoomi and Mickey Mouse Clubhouse. He also LOVES watching Monster Jams (monster trucks) when they're on. Last Thursday when Scot got home, Saxon went and climbed up on his lap with a book. It was a Dora book about flying kites. Well, that little stinker was pointing to the pictures telling Daddy exactly what everything was. He's also starting to count!! We've been working on just counting to five right now when he's in his vest doing treatments. When Umizoomi is on and they ask the audience questions - Saxon ANSWERS them!! When it's time to say Super Shapes or Pattern Power, he says it right with them!! When they ask if the shapes fit or if something is right, he will nod yes or shake his head no - and he's RIGHT.... he's a smart little whip!!
Here's a few pictures of him watching Umizoomi and doing the "Umi Shake"
It's so funny watching him do that!! Especially when it's time to "crazy shake" - he usually makes himself dizzy and about falls over!!
He also still has a thing for clothes baskets and Rubbermaid totes. He will dump the clothes or toys out of them so HE can play in them!
Such a silly little man!!
We have temporarily upped Saxon's vest and nebulizer treatments. He's been playing outside quite a bit, and he's been sounding kind of snotty and coughing a little. We pat him on the back to try to get him to cough stuff out, but he can't quite figure out how to get it out. We think it's allergy-related since he's not showing any other signs of being ill and he's not acting any different. We're going to keep an eye on it. If it doesn't clear up by the end of the week, I think I'm going to call Vicki or Dr Ulrich and see about putting him on antibiotics.
Saxon had to go to the doctor today for a one month weigh. He weighed in at 12.5 kg at his last appointment. This time he was at 12.9 kg. I have a call in to Vicki to see if that means we are going in to Mayo in October or if we get to wait until November. I'm also really hoping Saxon decides he's going to start eating more!! He's drinking his 3 PediaSures per day, but he's still not eating too much... It's frustrating. All we can do is keep trying!
Sunday, August 29, 2010
Lesson Learned
9:30 pm. Bedtime? Nope - it's bath time. Why, you may ask, am I bathing my little man at 9:30 pm? Well, we learned a very important lesson tonight. Saxon cannot have anything to drink before doing treatments either... We didn't think food would be a good idea, but we didn't think too much of him having about half of a sippy cup of PediaSure before doing his vest and nebby.
Saxon and Daddy were sitting in Daddy's chair. He did his nebby and vest... he was getting restless as usual. Daddy was getting him to sing, and Daddy was singing the ABC's as usual. Sax got all done with his treatments, came over and gave Mommy a high five, as usual, and went back to sit on Daddy's lap. And let out a HUGE burp. Followed by his PediaSure and part of his supper!! :-( Poor Daddy - all over his legs and shorts. All over Sax. Bath time.
Saxon and Daddy were sitting in Daddy's chair. He did his nebby and vest... he was getting restless as usual. Daddy was getting him to sing, and Daddy was singing the ABC's as usual. Sax got all done with his treatments, came over and gave Mommy a high five, as usual, and went back to sit on Daddy's lap. And let out a HUGE burp. Followed by his PediaSure and part of his supper!! :-( Poor Daddy - all over his legs and shorts. All over Sax. Bath time.
At least he enjoyed his bath!! And he loves his PediaSure (or P-Sure as he calls it!)
Some of his favorite words right now (with pronunciations!)
Raine (he says Rain-a)
Saxy (sounds like sassy)
Ducky (ducky)
PediaSure (pee sure)
Grandpa (apa)
popcorn (pa cone)
sorry (sa wee)
Abby bite! (clear as day, says abby bite!!)
By the way, Abby only nipped him once - whenever he gets his butt swatted, or pinches his finger, or trips, or anything, he says Abby bite. If he breaks something, it's Abby broke. Although, this last time when he broke the wheel off his monster truck, it WAS Saxy broke. We'll see how long until it's Raine-a broke! lol!!
Saturday, August 28, 2010
Poker Run Fun
Today was our first attempt at holding a CF Poker Run. There has been some talk amongst us about making the Poker Run an annual event. After how things went today, we have some ideas of things that we would change and things we would keep the same!! First off, I think it was getting to be too long of a time for the kids especially. Raine was restless and Saxon was getting tired. He eventually fell asleep on me and was getting upset whenever I tried putting him down. Finally he was tired enough that I could put him on the ground on a blanket that I had gotten out of the car (yeah, we forgot the stroller at home - didn't have enough room in the car!) But he's such a cute sleepy head!
When Aunt Lori got to the Green Mill where I was with the kids, she started joking about 'shaking people down' for donations. That turned into her and the kids (Raine, Saxon, and Lori's daughter Emma) going on the Poker Run!! The girls carried a Vikings bucket around at all of the stops and asked for donations to help fight CF. They did really good - they raised over $90!!! It's hard to say no to those cuties!!
We had 13 cards played for our first attempt at the Poker Run. After paying out for our High Hand Prize (2 pairs - 9's and K's) we still had made $70 (we also received a $5 donation at the Green Mill). So $160 for our first Poker Run, and not much at all in expenses - just the tagboard, printing, and stamps.
Some thoughts for next year:
Keep:
When Aunt Lori got to the Green Mill where I was with the kids, she started joking about 'shaking people down' for donations. That turned into her and the kids (Raine, Saxon, and Lori's daughter Emma) going on the Poker Run!! The girls carried a Vikings bucket around at all of the stops and asked for donations to help fight CF. They did really good - they raised over $90!!! It's hard to say no to those cuties!!
We had 13 cards played for our first attempt at the Poker Run. After paying out for our High Hand Prize (2 pairs - 9's and K's) we still had made $70 (we also received a $5 donation at the Green Mill). So $160 for our first Poker Run, and not much at all in expenses - just the tagboard, printing, and stamps.
Some thoughts for next year:
Keep:
- The Poker Stops
- Liability Waivers
- Cash Payout
- Not required to be present for drawing (last minute change)
- Prizes
- Hours - shorter (2-5?)
- Providing maps of the route
- More advertising
- Later in the year (end Sept/begin Oct) to avoid state fair/vacations
- Actual raffle (?)
Thursday, August 26, 2010
You're A CF Mom...
You know you're a CF Mom when....
- You judge your kid's nutrition based on what's found in a diaper
- You have permission to "beat" your child multiple times a day
- You conversate with other CF parents and doctors about stool consistancy on a regular basis
- You ENCOURAGE your child to eat salt and fat laden foods
- You ADD extra salt and fat to your child's foods
- You're excited when your child gains weight
- You ENCOURGE your child to gain weight!!!
- When you're grocery shopping, you look for foods with higher calories and fat content
- You teach your child to dip his potato chips in melted butter
- You're not worried when your kid goes into a coughing fit - you encourage him to keep on coughing
- You make chocolate pudding using half & half or heavy cream and whole milk
- You ADD half & half or heavy cream AND Carnation Instant Breakfast to each glass of whole milk
- You get your AC fixed and check to see if you can write it off as a medical expense
- You know the importance of different colors of mucus
- YOU have to explain to the idiots in the ER exactly WHAT CF is to get the proper treatment!!
- You get excited when a medication only costs $100.00
- Your medical equipments costs 5 times the value of all 3 of your vehicles combined!! (Recently got his vest - retail price: $16,500!)
- The cash price of prescriptions for your CFer, for one year, is more than twice your annual salary!! (VERY thankful for insurance!!) And that's not including anyone else's meds!
- You know the value of tying dirty diapers up in plastic bags EVERY TIME!!
- You get excited every WEEK your CFer is NOT on antibiotics!! (none since the end of March - knock on wood!!)
- Your doctor tells you to buy a stethoscope
- Your doctor has a standing order for antibiotics for your CFer - all you have to do is call and say "I need antibiotics, these are the symptoms" and they're automatically sent
- You have your doctor's cell phone number
- You meet a TON of doctors in specialties you've never heard of
- You feel like a hospital is your second home
- You know all the shortcuts through the hospital
- You can recommend to others what to order and what not to order from the hospital cafeterial
- You plan your vacations based on the location of specialized Centers and travel with an envelope of medical records
Subscribe to:
Posts (Atom)