Our old CF Commercial that plays on MCTV. Still working on this years.

Wednesday, July 8, 2009

2nd Annual CF Clinic Visit 7/8/09

Today Lil' Chris had his 2nd annual CF clinic visit at the Children's Hospital. He was such a good, brave lil' boy!!! He got his first hospital bracelet and he got measured and weighed on the big boy scale!!!

As soon as we got there, they made us go get his lab work done, b/c we couldn't do it before hand like they had wanted. He of course did not like that part, but what kid would like getting pricked with a needle? Luckily they got the blood on the first try, thank God!

Then we went back to the clinic and waited for all of our visitors. First came our Physical Therapist. She asked if he does well with the Vest and I said he does GREAT with the Vest! Then she asked if he ever coughs afterwards or during the Vest treatment, and I said no not usually. She was a little worried about that since the Vest is designed to break up the thick, sticky mucus so that it can be coughed out. She suggested that we try to get him to cough after each treatment or in between frequency changes. Oh yeah, she also changed our settings. We now have to do it for 30 minutes 2 times a day instead of 20 min. 2 times a day. She is keeping the pressure at 4, but adding a 10 min. session at frequency 10. We used to do pressure 4, frequency 12 for 10 min. and then frequency 14 for 10 min. Now we do pressure 4, frequency 10 for 10 min. then frequency 12 for 10 min. and then frequency 14 for 10 mins. This is how she explained the reasoning to us....

Think of your lungs as a tree... frequency 10 breaks up the mucus in the trunk of the tree to be coughed out. Frequency 12 breaks up the mucus in the branches of the tree, which goes into the trunk of the tree which can be coughed out. Frequency 14 breaks up the mucus in the leaves which goes into the branches, which goes into the trunk which can be coughed out. That's why it is important to start with the smaller frequency and work your way up to the higher frequency. You basically are making a clear path for the mucus to be coughed up easier. Makes sense!

She then did tests with him to see if he could stack blocks and point to pictures and say what they were and so forth, but he was just acting shy and didn't want to cooperate. I knew he could do some of the stuff, but I also knew he wouldn't do it for her in a new environment. There were too many new things in the room for him to explore. We'll have to work on that I guess;-)

Then our CF doctor came in and pretty much right away said he needed some Augmentin for his cough. I told him how for weeks it would come and go and then once this cold hit, the cough hit him harder too. He's been coughing the most today. So now he is on Augmentin for the next 20 days...2 teaspoons 2 times a day.

The dr. said that his lungs sounded "clear as a bell!" THANK GOD!! He is going to keep him on the 15mg of Prevacid Solutab once a day and 2ml of Vitamax once a day. The only other big change is that he is switching his enzymes from Creon 5 to Creon 6. Apparently they are going through some big changes and won't be making the Creon 5 anymore. He will still be taking 3 with every meal and snack though. I asked him if it was ok to take enzymes with a spoonful of dairy products and he said it's fine, but I always heard otherwise, so I might just play it safe and not do it. I know that when I take my lactaid pills with a spoonful of ice cream instead of water, I always get a stomachache. I also asked if he needed enzymes for small snacks like a lil' bag of fruit snacks or a lil' drink of milk and he said yes. That was a controversy between my hubby and I. It still is apparently. My hubby said I should have asked if he needs them for a couple of bites of something, like a couple of gold fish crackers or a couple of bites of our food to taste it to see if he likes it. I still say it's better to be safe than sorry and just give him the enzymes first. This seems to be the hardest thing for us, b/c sometimes when we are out with friends or family and they are giving their kids snacks and ask if Lil' Chris can have some, I always hesitate and my hubby always says it's fine if it's just a few. Will it ever get resolved? Eventually I guess when Lil' Chris starts noticing if he gets a stomach ache from it or not.

The dr. also did a throat culture. I'll let you know the results when I get them. Lil' Chris also had to get a shot in the leg today:( He did not need to get chest x-rays this time since it is done every other year when they are this small. Oh yeah, I also asked the dr. if there is any type of cold medicine that we can give Lil' Chris since he has a cold right now. He said NO! All they do is dry up the mucus, and for Lil' Chris it will make his mucus like cement. Then it will be even harder to break up and cough out. I also asked if dairy products aren't good when he has a cold, and he said it's fine and it's just a wives tale.

The dr. said that his weight gain was not where they would like it to be, but never told me what it was nor his height. I was going to ask, but you know how that goes...you move onto another subject and forget to go back to it. I called after our appointment when I realized it again, but they have yet to call me back. I'll let you know when they do. I had a feeling his weight was going to be down since he has not been eating good lately do to being sick:( Hopefully he gets his appetite back soon!!!

Next came the genetics counselor. She didn't really do much since we did our family tree last year. All we had to do was add our precious lil' Ayla to the tree;-) Then came the Dietitian. She also was not pleased about his poor weight gain. She asked lots of questions about what he will and will not eat. He'll eat cereal, hot dogs, lunch meat, cheese, but no mac n cheese or pasta or bread or eggs. She didn't seem to mind that we still give him baby food after seeing that he doesn't eat too much. I guess she figures the more calories the better, same as us:) She wants us to try salsa with him and fish sticks too to see if he'll eat either. She does want him to try a new drink called Vital Jr. from PediaSure. Now if you guys recall, PediaSure has made him sick in the past. This stuff doesn't say it has "Soy Protein," so I guess we will give it a try and pray he doesn't start throwing up for 3 hours straight like all the other times we have tried any supplements. These drinks are 8 oz. and have 237 calories. I'll let you know how he makes out. She let him try a different drink while we were there to see if he would like it. It was Resource Breeze from Boost. It was in a red juice box with a straw and it was orange flavor. He drank about 1/2 of it down pretty fast, but refused to drink anymore after that. It had about 250 calories. I was surprised for it being like a juice. Hopefully he will take to one of these drinks so we can get his weight back up.

She also informed us that we will no longer be getting the Wee Care Program. We were supposed to get it until he turned 3, but they changed it. Wee Care gave him free enzymes and Vitamax. So that's just great that we won't be getting that anymore!!! Not sure how much they are going to cost us. Hopefully BCMH will cover it. I've heard that the enzymes cost about $1 per enzyme. Lil' Chris takes about 15 a day, so for 31 days that means $465.00 and for 365 days that means $5,475.00!!!!! WOW!!! And that's just the enzymes!!!

All in all, it was an interesting day. Since Lil' Chris was SO good at the dr.'s, we took him to a new playground afterwards. He had a BLAST and went down ALL the slides!! Then when we got home, Lil' Chris helped Daddy put together a swing set that one of our neighbors gave us! Wasn't that SO nice of them?! They also gave us a sand/water table and a plastic pool too! Cool huh? Lil' Chris LOVES them!!

You know what the hardest thing for me today was? It wasn't holding my baby down while he was screaming getting his blood work or throat culture or shot done. It was letting my baby go. Letting him play with the toys and touch things and be free. My baby is getting so big so fast. I can't protect him like I used to. He wants to be free and explore. All I can do is hold back everything inside me saying "Don't Touch!!" and let him be a kid. This is the hardest thing for me, b/c I just want to protect him and keep him well. But now that he is 2, I feel like I can let him go a little bit. I did my part. The dr.'s told me from day 1 that the first 2 years are the most important. They said if I could keep him as healthy as possible in his first 2 years, the longer he would live. Only 3 colds in 2 years is pretty good I think;-) BTW, we sanitized like crazy;-)
His next clinic appointment is on August 5th at 2pm. Usually they want to see him every 3 months, but I guess since he has a cold they want to see him sooner to see if the antibiotic works.
PS. His new words are "Bless You" after anyone sneezes or even coughs...too cute;-) And Ayla found her feet today:)


Katey said...

I'm glad he had a good visit!! I know it had to be a long day. I never had to do an annual visit...they had just started them the last few years I was at Children's Hospital, and when they did I was in the hospital so much they just did them then!

Question: why wouldn't you take enzymes with dairy products. For me, I find those the hardest to digest and I make sure more than any other types of food that I take enzymes. Just curious!

And with regards to taking enzymes with just a couple of bites of food (like you mentioned goldfish, etc.)....I don't think NOT taking enzymes is going to hurt for something like that. I've experimented before and for me (everyone is different), it really didn't hurt or affect me. There is nothing wrong with experimenting. But of course taking enzymes is not going to hurt you either.

I'll be praying lil Chris starts eating better. I think that is one of the toughest battles for a CF patient and their parents. My mom had the hardest battle getting me to eat and gain weight and I wasn't the most cooperative patient/child either. It's hard!!

I'll be praying the Augmenting clears up his cough too!!!

Lil' Chris' Mom said...

Sorry, to clarify...I meant take the enzyme pills with say a spoonful of ice cream.

I can now totally see how you got that though, sorry:)

Leslie said...

Thanks for the detailed email about Lil Chris' CF clinic. It's always interesting to hear how other clinics do things or what they say. Hopefully Lil Chris will get over this cold quickly and his appetite will pick up soon!

You are doing a great job as a CF Mommy! Keep up the good work!! And I know what you mean about touching other toys, etc. We try to be careful but you also want your child to live life to the fullest and enjoy being a kid! :)

Anonymous said...

What great new words!
Hope Lil' Chris is feeling better soon and putting on the pounds!
We to were very upset about the WeeCare program. We are waiting to here from our insurance on what our portion will be.
Have a great weekend!

Auntie Steph said...

Wow, you definetly have a full day when you go to the clinic! I'm praying Chris will get over his cold soon, and the eating...good luck! TODDLERS ARE PICKY!!! :) Hopefully, he will like and be able to keep down one of the new supplement drinks!
That STINKS about the wee care...I'll be praying that your other insurance will pick up the cost!
Love the swingset...you have great neighbors!!!!
Love and hugs to everyone!!!

Graciy said...

That great that he gained!! Were you talking about the scandishake drinks? Josh loves those but sometimes we mix ovaltine in it.

Joshua uses Ultrse MT20 and ADEK and they have a great program that pays most of the coast. Look on CFF.org they have a lot info on it.

as for taking a enzyme with a bit of food, Josh said when he takes to may ezymes it makes it so much worse. I think this is because he takes MT20.

Anonymous said...

My daughter also has c.f. so I can relate to wanting to protect Chris. I decided when Olivia was diagnosed to try to allow her to live as normal a life as possible while trying to minimize her risks. I didn't want her disease to define her. Fortunately she has done really well, she is 6 now and has only had one stay in the hospital. I will keep your little guy in my prayers. Hopefully one day soon there will be a cure for c.f.