The proof is in the sweat

Yesterday I had a chance to get out of the house and go for lunch with two other CF Mommies. What a great resource these ladies are! Both have a child with CF, both around 2 years old, so have been through all the things we are experiencing and more. I learned new things, made new friends and hope I can continue to seek advice from them in what's sure to be many ups and downs to come.

One thing that P.J. and I were always curious about was the sweat test we had done on Nash when they first confirmed the diagnosis. We were never flat out told what the number was and yesterday I learned where to find this number. Who knew it was right in front of me the whole time!


What is the "sweat test"? 
People with cystic fibrosis have high levels of salt in their sweat. So basically the sweat test measures the amount and if it's high it confirms the diagnosis suspected from the newborn screening.

less than 30 = normal
30-59 = boarderline
60 or greater = positive for CF

Nash's sweat test number was 96:(

Here's a picture that P.J. had taken on his phone while Nash was having his sweat test done at three weeks old. I hadn't seen this until today! Totally painless as you can see by him catching flies!

The proof is in the sweat

This is also why we have to make a salt solution and add it to breastmilk in a bottle once a day. I'm thankful that he takes a bottle as others have had to try to give it to them in a syringe, which you can imagine isn't the tasty treat they would like it to be. Nash doesn't even notice when it's mixed into his bottle. Once he gets older our dietician will give us ideas of how to make his diet high in sodium as well as fat. Friends and family need not worry about sneaking chips and candy to our little guy!

"Sorry, we're going to have to cancel"

So the other day I was suppose to go to a friend's house for a play-date. (Which of course at this age is more for us mom's than it is for our kids!) Well, Nash has had a bit of a cough so I had to cancel and I found myself wondering how many times those words will come out of my mouth, "Sorry, we're going to have to cancel, Nash isn't feeling well". 


His cough hasn't been too bad but when our nurse called on Monday she told us that if it lasts more than the typical 3-5 days that we would have to bring him in and put him on antibiotics. She also told me that his throat swab from last week (checking for bacterial infections) came back clear! Yeah! So today being Thursday I'm happy to say that he isn't coughing very much and seems to be doing well. But it's tough being cooped up in the house all week and it's been way too windy for us to venture outside for a walk.

Before I had Nash I was very much a "go-go" kind of person. Much to my husband's disbelief, I enjoy staying put but miss the social interaction with others. If someone else would buy my groceries and run my errands I would stay home much more. Some of the benefits of being stuck in the house all week: my tank of gas is lasting a long time, my house is starting to not look like a bomb went off, I managed to have a bath for the first time since he was born, and it's much easier to get two sessions of physio done in a day. The down side is...we have no groceries and I feel like a hermit!

I'm looking forward to getting out of the house this coming weekend and meeting a few other mom's (who have a child with Cystic Fibrosis) for lunch. This will be the longest that I have been away from Nash ever! Wonder how many times I'll check my phone...

Generosity goes a long way

This may just look like a backpack but it represents the kindness and generosity of others.  While attending a Clinic visit I mentioned how it would be nice to connect with someone who has recently gone through a similar journey but are maybe a year ahead of us to hear their experiences. After saying that one of our nurses left the room for a minute and came back with this backpack. This backpack was put together by a family who have a daughter with CF. In it contained a letter from the family, as well as a sheet describing all the items in the backpack and how they were useful in their first year of her diagnosis. Some items were donated by companies, some where made and/or donated by friends and family and others purchased by the family themselves. In the backpack were so many wonderful things which now, have become some of our first year favourites! I get some many comments on many of these items. Remember that, "Keep Your Damn Hands Off" sign? Yup, in the backpack. Ever see me trying to unscrew with one hand the little pill container hanging on my diaper bag when about to feed Nash out and about? Yup, the backpack! Some of the other items included: hand sanitizer that hangs on the diaper bag, his "Blink Link" soother clip, an ever-so-cute teddy bear, extra large receiving blanket big enough to swaddle him in, a book on raising a child with health concerns. I could go on and on but the point is, how generous and thoughtful was it to put together these backpacks! Thank you!!

Just a few of the items that were in the backpack 

It's also been nice to connect with this family as they have just gone through everything that we are experiencing. I can only hope that we can be of some help to families who will be going through what we did just a few months ago. That shock, and then all the other emotions that came after.

Our generosity can start with what will be the beginning of many fundraising events that we will be taking part of for Cystic Fibrosis. We are looking at putting together a team for the Great Strides Walk that will take place on Sunday, May 27th. Suggestions are now being taken for a great name!!

Pseudomonas - the "Big Bad Wolf"

Pseudomonas - the "Big Bad Wolf" 
At Nash's clinic visit last week they did a throat culture to test for different bacterial infections.  They say that typically it takes 10-14 days for the results and no news is good news. Because this is the first throat culture he's had they said they would call us either way with the results.

I'm still learning about all this stuff but basically pseudomonas is a bacterium that can cause a bacterial infection which for CF patients can be harmful to their lungs. Pseudomonas is everywhere, soil, vegetation, water etc. If a CF patient were to test positive on a throat culture for pseudomonas then they would be given antibiotics called "TOBI" to treat it.

For a long time now I've been really looking forward to taking Nash swimming and upon learning more about pseudomonas I thought maybe we wouldn't go. Well, it's our personal decision not to let this fear stop us. Let us swim! We did want to wait until he at least had his 4-month shots just to build up his overall protection while being in public places and as for the risk of pseudomonas, we will not take him near the hot tub, as it is more common in warm water, and we'll be quick to wash him off at the pool and then a thorough bath once we are home.

So today we arrived at the pool and upon seeing how busy it was I could tell immediately what P.J. was thinking.  Then he turns and says to me, "That's a lot of germs".  Well I could have hit him! I said, "I went through all this effort to get here, we're going swimming."

Nash was people watching like the best of them and although as P.J. says, he didn't do much (what, was he expecting him to do, the front crawl?) he seemed to enjoy it and I enjoyed getting out of the house and doing something besides going to a Mommy and Baby movie or going to friends' houses.

Nash and I his first time swimming

A day in the life

So some might wonder how CF plays a role in our day-to-day life. For the most part the only way it does at this time (besides my fear of germs) is in the way of medications and chest physiotherapy. (He is currently four and a half months old)
Medications:

As I mentioned before, Nash takes a half a capsule of pancreatic enzymes each time he eats. (Which right now is about 6 times a day)  We were told we could try different ways of administering these enzymes, one being with a little bit of apple sauce.  We tried that at the beginning and he didn't like it so for us, we use little plastic medicine cups and have three lined up and ready to go at all times.  We just squeeze the medicine cup, pour them in his mouth and then feed. Sometimes depending on the angle we get them in his mouth he will choke and gag and other times, with the perfect pour, he doesn't even notice. When he starts on solid foods we will then be able to put the enzymes into his food. Yeah!! We are lucky that there is a government program that covers the cost of Nash's enzymes until he is 18. Also, if we are running low, we just call the pharmacy at Children's and they FedEx them overnight at no cost to us.

Enzymes all lined up and ready to go

Enzymes already split up and ready

As for the AquADEKs (Antioxidant Multivitamins and Mineral supplement)...I curse this stupid bottle!  It is bright orange, stinks and stains everything it comes into contact with.  I have said from day one, whoever came up with this stuff obviously did not have to give it to their child.  However, Nash loves this stuff!! He would drink the whole bottle if we let him.  This bottle comes from the States as there is no equivalent in Canada at this time so we can only get it from the pharmacy at Children's Hospital.  We only have to pay the dispensing fee which for us, would be the same cost if we had to continue giving him daily Vitamin D drops. (Which we don't as there is Vitamin D in the AquADEKs) We give this to Nash in a syringe once a day but I know that others who put it directly into a their bottle or give a little bit at each feed to equal the amount needed in a day.  Once he is older there is a pill form of this so we will be done with the orange stains on everything!! I try to keep certain onsies, sleepers, facecloths and receiving blankets that are specific to when we give him the vitamins.

Nash also takes Ranitidine twice a day for reflux.  We are told that many CF patients take this and is also helps with the enzymes.  Funny enough this medication smells like mint and you would like he would like it but he scrunches up his face and gives me a dirty look every time.  He doesn't fight it though.

Lastly, we give Nash a salt solution mixed into a bottle once a day.  Again, in the beginning we tried to do a little at each feed in a syringe but as you can imagine, drinking salt water no matter how small the amount is not fun so I pump to be able to give him one bottle a day with the salt solution.

Chest Physiotherapy:

I've touched on this a bit in a previous post but here is a picture of the onsie we were given to remember where on an infant we are looking to do the chest therapy.  We use a cupped hand and do "percussion" over these areas. Right now this is approximately 30 minutes, twice a day.  We use the Baby Einstein DVD's to keep him entertained and still while we do this.  There are some areas that I can do while he is asleep and it amazes me that he can sleep while I beat away on him.  They say that for some babies/children the repetitive beat/motion is calming for them and often will put them to sleep. We are lucky that is the case with Nash and hope as he gets older he won't fight us.  If Nash were to get sick, we would have to do chest therapy approx. 4X a day.

Does this kid look sick to you? Nah, me neither!

Does this kid look sick to you? Nah, me neither! 

So today was our monthly CF Clinic visit. I half look forward to these visits as I get to hear how great he is doing.  We attend the CF clinic at the Alberta Children's Hospital. Our CF team is amazing. We have a dietitian, pharmacist, physiotherapist, social worker, two nurses and three doctors (we see one doctor per visit but there are three on the team) and that makes up the CF team. When we go to clinic they rotate through and we see them all. It ends up being a long day as we're usually there about three hours and it takes some time to get there being that we live in the far South end of the city and it's in the North. At least we live in Calgary now and don't have to do the drive from Sylvan Lake. 

At today's visit Nash weighed just under 14 pounds and it in the 25th percentile for both weight and length.  Could be better, could be worse. Overall he is one very healthy boy, well, besides that whole having CF thing:)  His lungs sound great, he's doing lots of developmental things we would hope him to be doing at this age and you know he's gaining weight when you have to hold his cheeks out of the way to do physio!

To leave the house or not to leave the house...that is the question.

So, anyone who has had kids knows how hard it is when they are young to pack them up and leave the house. Well for me, it's that as well as the fact that outside that door is the big, bad world of "germs" that I can't control.

I find myself in stores constantly looking around for those who are sneezing, coughing, etc. So, imagine the self control I had to have the day that crazy lady in Wal-Mart put her gross, smoke-smelling hands all over Nash's toy keys and then tried to put them in his mouth. It took everything in me to bite my tough, smile and say, "Oh, he's not teething yet so he just uses it as a toy" as I pulled the toy away from his mouth. At least she thanked me after for having the moment to "play" with my baby as she touched his cheek. Goodness! Well, that was the day I came home and frantically found my "Keep your damn hands off!" sign for the car seat.  Ok, it's a bit more polite than that but that's the underling message!

Available at www.mamabears.com
Thanks again Chrissy!

Nash and his keys that he "doesn't" put in his mouth. 

On the topic of germs, how many types of wipes could there possibly be?!?! Well, here are the ones I have in my diaper bag alone! (Yes, these things all exist! And yes, I have bought them all!)
-Pacifier wipes
-Toy and pacifier wipes
-Teeth/mouth wipes
-Boogie wipes
-Regular wipes for diaper changes (I like the Costco ones)

Add to that the ones I have at the house which are wipes for surfaces, again, I like the Costco ones, and the Dapple "Toy and Surface" wipes. Man, I really need to invent some other type of wipe!

Wipes anyone?