Health Update

I have been wanting to write a post about our last visit to clinic.  It went well but there were a few changes made to his medication that I thought was important to document.  But, for today, all of that will have to wait.  Today I am stressed with something else that I need to share somewhere.  So--here it is.

Over the last 3-4 weeks, Finn has had several issues with vomiting, including a tummy bug this week.  He has spent a good part of the week tired, cranky, not hungry, and with a fever.  It's just be a tougher week for him.  Normally, that stresses me out.  But this week I consciously chose not to let it do so.  I was going to let this illness run it's course, treat it as needed, and not work myself up over it.  Besides, in the past it never really seemed to make a difference how stressed I got--he always stayed sick.  :)

Yesterday I received a letter from our doctor to help us appeal several of our insurance companies  policies.  It was a fantastic letter!  The last few paragraphs are very important:

The digestive complications of CF include mucus blockage of the pancreatic duct and destruction of the pancreatic tissue resulting in nutrient malabsorption and deficiencies.  Because of increased energy expenditure with worsened lung function and malabsorption, energy and protein requirements are much greater for Finn than a healthy age- and size-matched male.

Finn is at risk for malnutrition given his weight for age and weight for length are at the 16th percentile.  Our goal is for patients to be at the 50th percentile.  Finn's growth parameters meet the CF Foundation's criteria for more intense nutritional intervention.

Our medical/nutritional recommendation is for Finn to have 3 cans of Pediasure 1.5 each day orally.  We have several reasons for proposing this intervention:

1.  To keep Finn out of the hospital.  Malnourished CF patients are more likely to need to be admitted to the hospital for pulmonary exacerbations.
2.  Epidemiological data in CF patients indicate that lower weight and height are risk factors for a more rapid decline in pulmonary function in patients with mild lung disease.
3. Epidemiological data also indicate that low weight is a risk factor for the acquistion of Pseudomonas aeruginosa colonization and for the persistence of this infection, which correlates with a shortened life expectancy.
4.  Improved nutrition will improve quality of life based on several previously reported studies.

Like I said, it's a fantastic letter!  But here's my stress.  This morning Finn woke up feeling significantly better and finally hungry.  So, after eating a bit I decided to take in the damage from the last 4 days, and I placed him on the scale.  The poor kid has lost slightly over a pound in the last 4 days!!  He is now just under 25 pounds instead of being over 26 like he was just a week ago.  It's the first time he has ever lost weight, and for it be so much.....

So, today I'm sick with worry and stressed.  But, I do know that we can turn this around.  Today we go back to our routine and we will get his weight back up.  I cannot take him into clinic next month with a weight loss.  Our doctor has been very good at evaluating him as an individual and has actually never even brought up the subject of a feeding tube, but I do know that most CF children Finn's size are on just that.  So, for that I am grateful.  We have a fantastic doctor who is patient and understanding.  As long as I can keep him gaining weight, the team is happy.  I did, however, learn that they use age 4 as a cut-off.  The nutritionist told me that at age 4 he needs to be at least in the 10th percentile for weight for age or they generally pursue more drastic interventions.  I'm glad I have a goal and we'll keep plugging away.

If you have some time, send some thoughts Finn's way of a large appetite and a preference for vanilla again.  (Pediasure 1.5 only comes in vanilla and the kid prefers chocolate.  I think that might be yet something else contributing to this weight loss)  We sure would appreciate it!

**Update--I put a pair of jeans on him and gave him a decent drink of chocolate milk with whipping cream and then weighed him again.  He was back to 26 pounds.  I'm a LOT less stressed!  I can't remember if I had weighed him in jammies or jeans last time, but I know that at clinic he was weighed in jeans and was 25.5.  So, either way, he's still up a bit from our last visit which is a huge relief!