Wednesday, February 20, 2013

February Clinic

CF clinic days are all day family affairs, normally.

 Sometimes I bring Teagan with me, only when my dad comes and I have an extra set of hands. Sometimes I leave her with Grandpa Bill, and take Nathan by myself. Today, she joined.

I am so glad Nathan was in a pleasant mood, that really makes clinic days much easier.

It also helps that Teagan fell asleep on our ride down.

Nathan performed PFTs for his third time. I think he is starting to get the hang of it. I did get the number today, but there is no sense sharing because honestly the numbers don't make any sense to me except for the fact that they went up since last visit.

He appears healthy at the moment, his lungs sound pretty good, and he has gained weight {3.5 pounds since last clinic not even 3 months ago :: BIG grin, all our hard work is paying off}.

Big grins and full of cooperation for our clinic nurse. Share some of that with your mama, son.

And no worries because sister saw "the hippos". Something she looked forward to when Nathan was admitted this past September.

She kept her distance like usual - but ran full speed to them with Nathan all the way from clinic.

Nathan played a little harp, we hit up McDonald's and called it a day.

Sputum culture TBD.  *****Update 4/5/2013 Cultured MRSA.  Only found out because he has a persistent cough this week and I was double checking with clinic.

Tuesday, February 19, 2013

Self feeding

We've been following up with the feeding and swallowing clinic twice a week since graduation. Nothing changed last week - 2.5 oz puree, 1 oz mashed, and .5 oz chewable, 4 meals a day followed by 2 oz 1.5 cal pediasure and enzymes.

The enzymes have been a constant struggle. I don't have much experience dosing enzymes for real food, like solid meals vs. liquid, and not any liquid but the same exact liquid served the same exact way every single time.  It was easy but now I am paying attention to exactly how much fat and how many calories are in each meal and how much extra fat I am adding on top of that...basically we are going through a ton of ounce cups and measuring spoons.

But Nathan is doing well with the meals.  He is gagging only occasionally and is accepts the food the majority of the time.  Even the foods he says he doesn't like, he opens for, and chews/swallows.

This week, after observing his meal, they decided to let him self feed his pureed food.  In the clinic, he self fed sweet potato puree no problem.  The nurse practitioner and speech pathologist observed him without chin support on his chewables but he still needs the support.

His current meal structure has been adjusted to 1 oz chewable, 1 oz mashed, 2 oz puree (self feed if interested), 2 oz pediasure and enzymes.

Here he is gobbling up his chococado (chocolate avocado) pudding, which is an entire avocado pureed with cocoa powder, raw honey, and just enough milk to get it to the  right consistency (shhhh, I added just a little chocolate syrup too, because he deserved the treat).

And below, he is working on self feeding broccoli and cheese puree.  He loves the broccoli with cheese, but even so he still gags on it.  I helped him with chin support and fed him when he said this food was too hard for him to do himself.

Tomorrow, we have CF clinic.  It is the first time we will be there since the day treatment feeding program so I am excited to show them his progress.  I feel like he is looking alot healthier.

Tuesday, February 12, 2013


I am having the hardest time accepting the fact that every single aspect of our lives are impacted by cystic fibrosis.  Normalcy is hard to come by and there are only so many people who "get it" and those that "get it" must be kept at arm's length for fear of cross contamination.

I love that I regularly text and chat are more experienced CF mom.  She keeps me grounded and makes me feel "normal".

I love that I have hundreds of CFer's and CF parents in my life that I can reach through my social networks.  The other day on instagram I did a 5 things about me post, then after tagging a few others, found my clone of a CF mom right down to the severe anxiety.

Doing anything in our life takes so much planning, kinda like the planning that comes with a newborn, the many things that must accompany you on any trip out of the house plus the rigid schedule.  I much rather just stay home than have to deal with all of that.  "What time did we feed him? What time do we need to feed him again? Did he have this medication? What did he poop look like?  What did it smell like?  Was it super greasy?  Do we have all the food we need for his next meal?  His spoon and chair? Oh and don't forget the ipad otherwise we won't have anything to reward his bites with?  Oh, and Teagan."

No plan can be set in stone because surprises always arise.  Like frosty.  I've been planning on building a snowman since the first snow storm of the winter.  It never happened, until today.  I was determined to make it happen.  God help me if that snow melted before I had a snowman standing outside my door.

I had no time to search for the appropriate attire because if I waited too long, I would miss my opportunity, it would be time for the next meal.  So Miss Teagan had to wear her brother's old snowpants, and my gloves.  And Nathan just got sweatpants, my gloves, and a hood.  But one thing that went right, is the fun my kids had, the smiles, the laughter, the eating of snow, the multiple carrots stuck into various places of our frosty, all of which made me happy inside.

We experienced so many normal winter activities in one day that I almost felt like we were living normal lives.  We came inside, I forgot about the fact that we should have done breathing treatments already and said for this hour we are going to drink warm cocoa with our pinkies up, of course.

And even if we did breathing treatments late, we still did them.  And now if the snow continues to melt quickly, I will feel satisfied knowing frosty is standing by our front door, wearing one of my favorite scarves.

Monday, February 11, 2013

Some days...

Some days you just need to drink a bottle of champagne for dinner and call it a day. Today was that day.

All in all, it was a great day. I found many reasons to smile.

But in the end, I feel my kids were missing out. Our daily schedule is predetermined by breathing treatments and now feeding sessions. My attention is consumed by tracking foods, enzyme dosage, poop size and consistency.

Our entire family is consumed by a disease.

I could take a photo of my day planner, except I drank an entire bottle of Asti and am typing in bed. Written in today's column:

Reschedule CF clinic
Call doc for refill
Drop off prescription at pharmacy
Follow up appt. at feeding & swallowing center 11:30
Build a snowman!

No joke, that's exactly what's written for Feb. 11th. And the one thing that is ticking me off more than anything is that I have still not crossed that snowman off my list - especially since Nathan has been asking to make one since the snow we had a few weeks ago.

It also pains me that I have to try and schedule "fun time", stuff that should just occur naturally in childhood. But it seems something always gets in the way.

This afternoon I hadit all planned: feed 3rd meal then play in snow. Except this never happened. I did not anticipate having to fully disassemble his "feeding car seat" and disinfecting/cleaning vomit and kitchen floor.

By the time I finished this, because it had to be cleaned up by his 4th meal, it was too late and I was too tired to get dressed for snow.

So tonight, typing with one finger and one eye, I pray for a cold non snow melting day tomorrow. Because if I see one more photo of a child playing in the snow I may have to get myself committed because my children are missing out on a "normal" childhood.

If something doesn't make sense, I blame Asti.

Saturday, February 9, 2013

All my time spent shopping for food, preparing food, and feeding/medicating Nathan.

I wanted so much to take the kids outside to make a snowman today but I just finished Nathan's 3rd meal, it is 4:30, I am exhausted and it will be dark soon.

How do I make time for fun?

Thursday, February 7, 2013

Best Friends

Nathan's best friend, Ayden, has seasonal asthma and is currently doing nebs just like Nathan. At first he was so proud to be just like his buddy, but now he hates it and hates that Nathan has to do it every day and is determined to fix Nathan up.

"Hi Nathan, I'm going to be a doctor when I grow up and fix you up".

One more day

All these photos are from yesterday, our last day in isolation.

We spent a good portion of the day drawing "Nathan pictures" on the thank you cards.

I wrote each person's name on the envelope and then showed Nathan a photo of the person so he could know who he was drawing for. That makes a big difference you know.

To be honest, I was trying to make the most of it and at least pretend we were having fun because mama was losing her mind.

I was extremely overtired as well considering my 8:30 bedtime has been failing me, with a 1 am eyes wide open wake up time. No bueno.

After his final feed, I drove home, picked up his "feeding car seat" still attached to my dad's old waiting room chair, grabbed our hand blender and drove to my in laws for dinner.

I prepared him mashed cucumber, applesauce, and puréed meatloaf. Jay fed him and Nathan ate it all very well until the last bite of meatloaf which he gagged and vomited. The doctor said it was likely related to him holding his bowels, causing a buildup of pressure...enter more miralax.

Drinking it like a man, from a cup with Wii remote in hand. He is currently up to an entire cap of miralax a day in addition to two teaspoons of mineral oil. Still holding his BM's like a champ, stubborn boy.

And in an attempt to sleep all night, I tried to do some easy cardio before bed - like I said on Instagram - easy, meaning blue jeans, normal bra, and not enough sweat to require a pre bedtime shower.

I still woke up in the middle of the night but It didn't take me 2 hours to fall back asleep.