Hi friends. Earlier this week I broke my social media beak to share some hard news about Danny. We have seen a steady decline in his lung function, followed by his heart rate acting up. After a bronch that saw some fluid last Friday and this past Monday spent the day in the ER, so they decided it would be best if Danny come into Hopkins and then can see what is going on.
Looking at each of these factors, none of them are overly alarming on their own yet:
- Decline lung function: it is only in small percentages, even if steady
- Increased heart rate: it was still in the middle of the “increased” levels
- Exhaustion, lack of appetite, inability to gain weight, and consistent pain from unknown source: CF or transplant recovery are reasonable explanations
All of these things together a little more worrisome…. but the true fear is all of these factors were how the second transplant journey all started. We saw some bumps and some declines like this December 2018 and it started similar to this: testing…. measurements…. procedures to address potential aspiration (stomach juices getting in the lungs). Since his admission on Tuesday these were all the same tools utilized and areas explored. Results: nothing. And that feels the same too.
They have a pain tool they are going to try – some sort of shot of relief in his chest area – and then they are sending him home to monitor from here. This of course is great news- having time with us here is always a good thing. But the lack of answers.. open ended questions… and not very concrete next steps…. is hard to feel settled returning to life.
So it is important to look at the facts:
1 – these lungs are new are healthier/more room for growth than when this started with his last pair
2-we are not the same people. We have been through such hard and keep standing … that is powerful strength to get us through the next chapter.
3- it is COVID. And although that is a loaded reality with lots of sad and hard things…. in our little world it means truly time at home. Having to be creative about how we connect, as our favorite things are off limits for awhile – movies, museums, restaurants- it was starting to get old and frustrating, but now the fear of it being rocked by the return to medical life … we have a new motivation to appreciate it and our time with the little family we have been blessed with.
The facts look pretty good…. the trouble spots can be watched and if they continue to keep rearing their ugly head – well we have been there and we can keep walking. And when the world of logic…. emotion…. science… ends there is God. All things can be made right through His ways…. just faith.
Thank you so much for reading and remember to make it a great day!