Back to Reality

Sometimes I feel like Kyle lives in his own little CF bubble.  He has been so healthy these past 19 months with clear lungs and great weight gain.  I even feel like at times he doesn't even have CF...until we have an appointment like we did on Monday and it's back to reality.

The appointment started off with chest x-rays, so his doctor can see if these are any blockages in his lungs.  Holding my little boy down while his chest is scanned and x-rayed is just as unpleasant for him as it is for me.  Luckily, if the technician gets it right, it goes by relatively quickly.

Once the chest x-rays were done we moved back to the waiting room to await the dreaded blood draw.  This is all part of Kyle's annual "labs".  The wait was rather long as they were backed up, but once we got in there all hell breaks loose.

First they tried to get blood from his left arm.  No go.  Then they switched arms and poked him again in his right arm.  No go.  Back to the left arm and finally with the help of the "sucker", as I call it, they finally got blood drawn.  All this going back and forth while I once again, hold down my little boy as he fights, screams and cries.  I'm stil not sure who suffers more.  Me or him?

After he was bandaged up (on both arms) we headed up to the 4th floor to the Children's Respiratory department to see Doctor Cindy, his normal CF doctor.  After his weigh in, height check, culture, oxygen levels, etc., Cindy comes in to tell us that Kyle's BMI has dropped significantly and has some concerns.

So, we discussed adding a few new things to his diet and changing a few things up.  Before, we were doing the Carnation with his milk and now we will be using ScandiShakes instead:

One full packet of this mixed with 8oz of whole milk is 600 calories.  Not that Kyle takes 8oz of milk at one time, but he usually gets 4oz, so mixed with half a packet will be 300 calories, mixed with whipping cream is another 50.  We started this the same afternoon we got back from the clinic visit and I'm hoping when we go back in a month it will have made an improvement on his weight.  Cindy mentioned the feeding tube as an alternative option, and at this point I really don't feel it's necessary.  I'm hopeful that by adding these shakes and few other items to his diet this can be avoided.

Overall, though, he's still healthy.  They did find a tiny, minor blockage on one of the smaller airways in his lungs, but Cindy said this is the same one they saw in August and there is nothing new, so I guess that's good.  It's still bothersome that he has ANY blockage in his lungs already, but when he has his infant PFT's done (soon I hope) it will show if this affecting his lung function at all.

We also talked about adding Pulmozyme and Hypertonic Saline to his neb treatments, but since they aren't covered by insurance for infants/toddlers, we decided to hold off until we felt he actually needed them.  He seems to be doing fine with the regular saline/albuterol mix, so again, we'll wait until those PFT's are done to decide any new treatments going forward.

I really, really hate this disease.  I hate that my little boy, who would otherwise be just a normal, healthy little boy has to go through this all because of some defective genes.  It just seems so unfair.  Monday night I ended up crying myself to sleep.  I try to stay so strong for Kyle and for my husband and my family, but when I'm alone and no one is around, I cry.  Sometimes I just need to release it all and then I go to sleep, wake up the next day and start fresh.  My own personal soul cleansing.

It just gives me more mental ammunitiion to keep fighting this disease and raise money for the cause.  We will fight and we WILL win!