So long summer…
It has been awhile since I posted, and I am sorry for that.
While our sharing has been quiet - it is not because Jack has had good health.
It is because I have a hard time posting the same things and calling them “updates.”
Since Jack’s bronchoscopy in May - which yielded no concrete results other than signs of inflammation & bacterial growth - Jack has had pneumonia three times (6 times in 2024).
This week he missed the first few days of school as he was required to be home, on oxygen, again.
His May and July pneumonias took a full 2 weeks to recover.
In summer, it is easier to accept - but now that he just started kindergarten, we are feeling the length of his sicknesses more. He missed almost 80 days last school year, so we really hope to lessen that number.
One thing I will say is that we are glad we can care for him at home.
We have not been hospitalized since January.
But it is because of the work we do with Jack every single day.
The whole thing is hard not just emotionally, but physically.
We feel exhausted, frustrated, and again - as if there is no end to this.
Why does he continue to get pneumonias?
We lessened his risk of aspiration by putting in the G-tube, forcing him to use a pro-valve cup, doing VEST therapy and saline as many times a day as he will allow, and he’s had two vocal chord injections.
WHAT IS GOING ON? WHY DOES THIS KEEP HAPPENING?
The theories are still the same - the moment he has a stuffy or runny nose, he doesn’t cough normally & it drips into his lungs and creates bacterial growth.
But how often is a boy to be on antibiotics? Is this the only answer for him?
For now, YEAH. That is all we have.
There is a thought that CF kids are on a consistent maintenance antibiotic, three times a week, to hold off infection. But those medications can have side effects so we’ve avoided the discussion. But at this point, I think we have to really think about it? He can’t continue to have pneumonia every 6 weeks - then two weeks of antibiotics, can he? I don’t know - you tell me?
All of that said, we continue to live for the healthy days & try to create a normal(ish) life for Jack.
What you see on social media is a mix of Jack updates & highlight reels of what is good in our life.
What you do not see is the constant medications, the pulsox and temperature checking, the all-day therapies for his lungs, bloodwork, office visits, calls with his doctors, late nights watching him sleep to make sure he is okay, repositioning of his body so that his oxygen levels go up a few points, medical supplies all over the house to support him awake and asleep.
It is a lot…
We had a better summer than we did last year.
We went on two vacations & did the best we could while we were there.
I think Jack enjoyed it, but I KNOW the girls did.
We are fortunate to have so many great families around us that keep Vivian and Rylan busy & allow Jack to be himself even on the worst of days.
Jack’s big sisters (Viv - 5th and Ry - 3rd) are at school this year to keep an eye on him.
But, please pray for Jack to get through school this year with less sickness.
And help us continue to be positive and optimistic at every step of this journey.
<3 The Taylors
Also, please pray for tumor shrinkage - next scan is September 26th.
