Thursday, July 12, 2012

Eternity.

It feels like an eternity since I posted...well it hasn't.  Just 26 days.

It has been such a good feeling knowing that we have been out of the hospital now 10 days more than we were in the hospital.  Cayden is staying very busy with summer school and JAWS swim team.  I was very anxious about his first in-the-water experience since he was released from the hospital but he did amazing.  Last night he finished second in the free-style event for 8 and under.

He turned 7 on June 28th and it was such a HOT day we finally we able to take him to Noah's Ark with our Give Kids the World Make-a-Wish passport he received in December after our stay.  Our whole family was able to enjoy the day with him for free.

Cayden is still coughing which is worrisome to us, but we aren't sure if we should be concerned or not.

His allergy test came back with an allergic reaction to aspergillus mold.  We are stilling learning what this means and how it will affect his CF.  But the good news is that he is NOT growing aspergillus mold in his sputum.  Dr. Green was not concerned when he called us after Cayden was released from the hospital.  His next appointment is on July 20th and we will discuss this more with the team then.

For now, we are still on the hyertonic saline twice a day, flovent and zyrtec.  I am a firm believer that this humid, dry, no rain weather is having a huge impact on Cayden's breathing.  All I hope is that it is not damaging his lungs.

We are also waiting word on a new nebulizer called the E-flow.  It delivers medicine (TOBI and Hyerptonic) in less than 6 minutes and can be operated on battery.  I am trying not to imagine how easy and awesome treatments would be with it until all the paperwork is signed and the Brown UPS man shows up on our door step with the box.  The equipment is rent only with a prescription for TOBI which Cayden has right now as a 28 day cycle alternating off 28 and on 28.

I totally salivate just looking at it...Word on the street is amazing.

I will probably not blog until after our appointments on the 20th with all the kiddos.  We are hopeful for good weight gain and no bacteria growth!!!!

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