A day in the life...

So back when Nash was 4 months old I did a post about what a typical day living with CF was like so I thought I would do an update. Surprisingly, not a whole lot has changed in regards to his medications and his overall health. We are forever thankful for our CF team for always being on top of things and feel that we have been lucky thus far with his health. He has had cold after cold but we know that this would be the case for most children entering daycare for the first time.

Medications
In regards to medications, Nash takes 3 enzymes per meal, 1-2 for snacks. These enzymes are pancreatic enzymes and do what our pancreas does, which his cannot. He needs to take these every time he has something to eat or drink except for things like fruit, or fruit juice, because there is no fat to break down. He also takes Ranitidine twice a day. In the beginning he took it for reflux, but now he continues to take it in order to help the enzymes do their job. He takes Urso (Ursodiol) for his liver, which has only been since about the end of August. This is common for many CF patients and works as a preventative measure for his liver. He takes this twice a day. AquaDeks is the bright orange multivitamin/mineral supplement and his takes this once a day. We add extra table salt to all of Nash's food. I've gotten a few strange looks in public with this one! CF patients sweat out way more salt than us. That's why they do what's called a "Sweat Test" when confirming CF. It measures the amount of salt.

To the left of the picture are things that are not taken daily. The bottles are an antibiotic that Nash takes when he has a bad cough that won't go away. Since July he has been on this three times. When Nash gets a cold it's not like a typical child getting a cold, it holds on for a long time. He usually gets a bad cough and then I begin to panic. We wait 5-7 days of the cold taking its course and then we call/email clinic and get their advice. We are most worried about a viral infection becoming bacterial. Bacterial infections can cause long-term damage his lungs and depending on how much damage is done over the years, often leads to needing a lung, or double lung, transplant. Our clinic tends to be on the more aggressive side of treatment in order to prevent these bacterial infections from getting into the lungs.

The ventolin inhaler is used periodically when he is sick. Often times children with CF will also have asthma but so far, so good.

Physio
I've written a lot about physio in the past, and our struggles with it, but basically what we do is called "Manual Postural Drainage". By moving Nash into different positions we are able to "beat" on his lungs, haha.  We use a cupped hand position and try to do approximately an hour each day. This is now tough being that we both are working full-time. We have to wake Nash up early in order to get some done in the morning as he's too overtired and cranky to handle an hour in the evening. P.J. does about 15 mins in the morning and then when I get home from work I try to do another 45 minutes. To squeeze this in after work, supper, bath and bed by 7:30-8:00 is a challenge and there are many days where I envy those who can come home from work and have play time and enjoy their evenings. I feel like a lot of my time with him is beating on him and giving him medications:(

Over the holidays a family member did make a great point though, that's an hour of physical contact he is getting with us and that can be pretty special bonding time. When he is calm, I definitely feel that way. When he fights it, I'm pinning him down and he's screaming, I don't feel like we are bonding as much, haha. We just keep hoping that as he gets older and we can explain it to him, that hopefully it won't be so hard.

So that's a quick update.