Tune Up

I just wanted to take a moment to pause with all the commotion of Cayden being admitted to the hospital to explain a bit about tune ups for patients with CF.  After a "google" search of the term "tune up" my results pulled up this blog post by Lauren which I thought was a great explanation of what inpatient therapy is all about.

Tune-Ups Explained

Preventive care is a cornerstone of effective treatment for cystic fibrosis. A “tune-up” is a term used in the cystic fibrosis community to refer to a preventive course of intravenous antibiotics and respiratory therapy. Depending on the doctor’s preference and the specific case of the individual with CF, a “tune up” can last from 2 to 4 weeks. Usually a tune up is started in the hospital, where the CF specialist and team can keep a close eye on things with regard to dosages of antibiotics, and any changes in pulmonary function.

Some CF specialists and CF centers maintain a practice of preventive “tune ups” every six months.

The practice of regularly scheduling a tune-up can be especially beneficial for young adults with cystic fibrosis who may not always be the most compliant with their medications. By giving them a boost of antibiotics and bronchotherapy before they exhaust themselves and deplete their health reserves, they will be in a better state health-wise to continue as many normal activities as possible with their peers.

Similarly, many college students with CF have found that by scheduling a tune-up during their semester breaks, they are able to regain some of the ground they lost due to stress during the school term. Checking yourself into the hospital for a tune-up while classes are not in session is a great way to keep from missing important class notes and lectures.

The most difficult part of a preventive tune-up is that the patient may not feel as sick and worn out as during other times requiring IV therapy. This makes the resting and recuperating part of a tune-up a challenge, because the temptation is there to remain active and continue in all normal activities. The powerful combination of antibiotics may actually make a person feel worse for a time, but a rebound is almost always sure to follow. Even though a person may feel “fine” during a tune-up, it’s important that they rest, stay well hydrated, and use the time to replenish the body.

The hope and goal is to prevent repeated hospitalizations due to pulmonary exacerbation, pneumonia, or other worsening of symptoms.

The biggest question when you hear the word hospitalization is often: Is my child bad enough for a tune-up?  And it's hard not to fight something that is necessary when you can't see what is going on inside.  Truth is, the question is my child bad enough for a tune-up is probably the wrong question to be asking and if you are, they are beyond in need of a tune-up.

Going into last week the thought on my mind wasn't so much the question above, but that mom intuition.  This is the worst I have ever seen Cayden.

Coughing after every physical activity.
Running out of breath.
Sitting out.
Falling asleep after school.
Coughing in his sleep.

Nothing about his normal activity was normal.  It was actually very worrisome to Chris and I.  We had to keep him home from school, swim practice, watch movies @ 2 in the morning to help him fall back asleep even during long coughing spells.  Everything he does so routinely had become compromised.  We were making exceptions for this disease.  For CF.

The other question, in my opinion, which is harder to grasp is How did he get this bad?
Because we don't see it,
and CF is invisible.

Cayden has been hit month after month with seasonal allergies, ear infections, sinus infections.  His lungs fight back hard but the infection stays intact.  He tries to work through the bacteria but the bacteria ends up working his lungs harder.  It is a tug-of-war style battle and in this head to head, the bacteria advanced and his lungs have been weakened.  Cayden is still not the best or most perfected at his PFT's (pulmonary function tests), however on a "good" or baseline clinic visit he registers his FEVs at 110%.  Today at clinic he only registered 70%...a 30% decrease.  His coughing had also taken a huge toll on his weight-he lost over 2 lbs since April 20th.  It all adds up.

While he is inpatient respiratory therapists will come to do his chest treatments 4 times daily and they are also adding some new medications during his stay like hypertonic saline (nebulized salt water).  The TOBI that he had taken for the past 3 months will now be given intravenously.  Labs and a PICC line will be done tomorrow.  Until culture results are back Cayden is confined to his room for roughly the first 48 hours.  He will enjoy a nice view of Middleton, but mostly the same four walls for a few days.

As sad as it is to see him in the hospital he is feeling so much better already he tells me.  I like to think of this as an intense bootcamp to kick CF booty!  We'll get his weight back up where it should be and his cough back to baseline where it hasn't been for over 3 months now and 3 rounds of TOBI later.

Our school community has already been sooooo supportive and helpful.  I have dozens of offers for meals, babysitting for coverage with our other kiddos, prayers, and the list goes on and on.  His first grade class also offered to organize a class picnic when he is out of the hospital since he will miss the last week of school.  Everyone is so thoughtful and we are grateful and humbled all at the same time.

Tomorrow Cayden is going to skype into class to do some work with his friends and take the spelling test on Friday.  Thanks God for technology it is sooo awesome!  He spent some time "skyping" his aunts, uncles and grandparents tonight during treatments.  If you have skype and want give me your login, shoot me a comment and we will add you to our contacts!

As of right now we have been given the time frame of 14 days...that sometimes changes but most of the time is more of a "minimum" number.  So we always keep 14 as the earliest, that way we are not disappointed if we get our hopes up for an early discharge.  Cayden's other CF buddy Tucker is just a few doors down so we will get to see lots of their family as they were both admitted on the same day. 

He got his IV in today after a couple tries and a changed arm.  He's a little bummed it has to be in his left hand, the one he writes with.  But his spirits are good and he is as usual a light-hearted and energetic boy!

I will be doing most of the day shifts while Chris is there at nighttime.  Juggling a family is the most challenging but the kids at home are ok with everything since we try to keep their routine as "normal" as we possibly can.  We tell them what is going on and are very honest with what they should know for their age.  But of course they don't exactly understand why Cay can't come home and miss him. 

Other than that, watch for updates as our days progress and I promise more pictures when I am rested!  My helping hands site will also be updated with meals, rides, coverage and other areas we need some extra "helping hands" during his hospital stay.  If you are not a member it is super easy to sign up and get connected- Topel Helping Hands Site.  I will be adding prayer warriors to the activity calendar daily, so even if you are not able to help physically you can do what is most important and that is prayer!

Cayden told his 1st grade teacher, Mrs. Kotz tonight after she said they prayed a Memorare for Cayden today that he could tell they prayed because he felt better!

Cayden, I couldn't agree with you more!