Clinic Day

The first Monday of every month is "clinic day".  It's the day that a pulmonology team from Children's Hospital in Denver comes down to Colorado Springs to see patients.  We have an appointment every month for the next couple of months.  Honestly, clinic day is not one of my favorite days.  Clinic appointments can last anywhere from 2 to 3 hours.  It makes for a long day.  The last two months we have found babysitters for Kai, which has helped, but poor Finn has to be there no matter what.  I have a feeling it's only going to get harder.

So, what happens at clinic?  Well, first we get checked in by a nurse.  They take Finn's blood pressure, oxygen levels, head measurement, height, and weight.  On Monday he was 22.5 inches long and weighed 11 pounds 1 ounce.  This puts him in the 1st percentile for height and the 3rd for weight.  On the height versus weight chart he was in the 42nd percentile.

Once we're checked in, we're taken back to an exam room.  They're small rooms.  Once we're settled, the team starts taking turns coming in.  There's the pulmonology nurse, the respiratory therapist, the pulmonologist, the nutritionist, and the social worker.  The nurse asks us how things have been going, takes notes for the rest of the team, and also talks to us about any clinical trials/studies that Finn may be eligibile for.  The respiratory therapist goes over airway clearance techniques with us and listen to his lungs.  She also takes a throat culture once every three months to see what bacteria, if any, he may be growing.  The doctor does a little less than a pediatrician. She listens to his lungs, checks his throat, nose, and ears, and presses on his belly.  Plus she goes over any concerns we may have and talks a bit about every other piece (the nutrition, the respiratory therapy, etc.)  The nutritionist ask about how he takes his medication, how much he's eating, and how he's growing.  She's the one that gives us his percentiles.  Finally, the social worker asks us how we are doing emotionally and finacially.  She directs us to financial programs that we may need.  And that's it, finally!  Like I said, they're long visits.

So, where are we at now and how is Finn doing?

Well, we've gone through several medication changes so I'll try to be brief and touch on each piece.

Enzymes:  Our original prescription was for Ultrase.  Unfortunately, we had a hard time with those.  We discovered that Creon has smaller granules and smaller capsules. Perfect for our small guy.  So we switched to Creon.  In November he had a dosage of one capusle per feeding.  At the beginning of January the dosage was changed to one and half capsules per feeding.  While we all feel that his dosage needs to go up, he has not gained the necessary weight (hard to do when your dosage is too low!) to do so.  He's maxed out the strength that he can have.  So, he's still at one and half.  Hopefully next month we'll be up to two.

Vitamins:  We started with the free vitamins that came with the Ultrase, AquAdex.  They were nasty and yellow and so I mixed them in his milk.  Now we've moved on to the free ones with the Creon. They are cherry flavored Vitamax.  So much better.  Now he can take his 1 mL just as a squirt in the mouth.  So MUCH better!

Acid Blocker:  We started this before his CF diagnosis as a response to possible reflux.  He was on Zantac.  In December that was switched to Prevacid Solu-tabs.  Those were SUCH a pain!  They never really dissolved all the way.  So, in January we switched to Prevacid capsules.  He now gets a half a capsule a day.  So much easier!

Salt:  This will stay at 1/8 teaspoon a day until he's six months old.  At that time it'll go up to 1/4 teaspoon a day.

Antibiotic:  Finn had an antibiotic at the beginning of December for a cold.  On Monday the doctor prescribed another antibiotic (Augmentin) for a possible sinus infection.  At least he thinks it tastes good.  :)

RESULTS

Weight Gain:  When we first began this journey, Finn was a newborn eating small amounts 10 to 12 times a day.  Now that he's older he's eating more at a time, a lot less frequently (normally 6 to 7 times a day).  In a day he can consume as much as 32 ounces of formula.  When he was eating more frequently he was gaining close to 30 grams a day.  On Monday he clocked in at an average of only 18.5 grams a day.  As he should be gaining 20 to 30 grams a day, we needed to make some adjustments.  He doesn't weigh enough to up his enzymes, so we have to up his food.  The nutritionist gave us instructions on how to mix his formula so that there are 24 calories per ounce instead of the standard 20 calories.  It's safe to assume that he is unable to absorb 20% of all that he eats, so upping it to 24 calories will actually help him absorb almost as much as a normal kid.  Hopefully that will help him gain weight more quickly.

Poopy Study:  (officially known as fecal assessment, I believe) The result of this test indicates that his body is not producing many natural enzymes at all.  But that's not surprising based on his symptoms.  This did not surprise us or the doctor.

Genotype Study:  Finn's blood work came back showing he had two severe gene mutations that cause CF--delta F508 and 3905 insert T.  The difference between a severe mutation and a mild mutation is the effect on the pancreas.  Severe mutations are those that impact the pancreas and require an individual to need the supplemental enzymes.  Obviously, we had already drawn the conclusion that Finn needed enzymes, so the results indicating two severe mutations are not surprising.  The positive side to this is that there are drugs about 5 to 10 years out (fingers crossed) specifically targeting the delta F508 mutation.  These drugs would help correct protein that this gene produces so that it would be viable for the body.  Right now, this gene mutation results in the protein being produced but in the incorrect form.  So, if they fix the protein, they could eliminate some of his problems.  Crossing our fingers!  The bad news is that the 3905 insert T is a less common mutation and right now there is nothing coming to fix that mutation.  That mutation actually results in the body not producing the protein at all.  Blehhh!  Well, if we could get half of him fixed half-way......that's a pretty good start.

Overall the doctor says he's doing great!  My daily focus is keeping him as healthy as possible so that when these drugs do come, he'll be able to see biggere benefits.  I'm excited for our appointment next month as our normal doctor will be out on maternity leave, so we will be seeing Dr. Accurso.  I can't wait to hear what he thinks of our little Finn and what he feels the future can hold.  I'm very excited!

PS.  For some fun information, here's a recent CF newsletter from our care center.  Look at the number of calories and that crazy peanut butter popcorn recipe. Oh dear.....I think I'm going to gain more weight than Finn!!!  As for the nurses, Shelly is our nurse in Colorado Springs, but I talk to Erin all the time on the phone.  Laura was the nurse who called us with the official diagnosis.  What a great team--I'm really starting to love them all.  And as long as that clinical trial is still going next month, Finn may be eligible for his first one according to that chart.  I'm very excited for next month's appointment!  I think I already said that. :P