Have A Little Faith in We

Two Friday’s ago I was waiting an update on Danny’s tracheotomy procedure. It had been decided that since the lungs looked good and working well, it was Dan’s ability to use them that was causing some dip in oxygen level, a trach would help him be consistent with breathing. Plus it would allow the removal of the breathing tube, that often causes stress and anxiety, just by its prescence. The neurological issues they have been running into (foggy, exhausted and confused) were likely a result of side effects from medication interactions – this is normal and as you can imagine VERY complicated in transplants (SIDE NOTE: Danny had experienced some complications during surgery, but all in all they are seeing improvements so the cause is less of a concern.  In any massive surgery like this you are bound to have complicated results in the body like the two mini strokes Danny experienced – but thankfully they were not the cause of long term issues). This was a hard one though, a tracheostomy is something Danny has always feared having to do and during this time I am having to consent on his behalf to move forward with these procedures and plans- so it feels heavy. But it was what our team recommended and I trust them 150%. So I just waited for the update…..

Early afternoon my phone lit up with a Baltimore number and I eagerly snatched it up with I am sure a very nervous “hello?!?!” A sweet lady introduced her self as part of Danny’s Occupatinal Therapy (OT) team. She asked if I had heard about the option of them working with him. I explained how I understand they were working out his legs so they would not cramp and would stay strong …. as I started to mentally drift off wondering when I would get a “real” update. She patiently went on to explain they were something different. In fact Hopkins had recently received a grant to work with this new technology that was an iPad like thing that let Danny communicate by selected commands or spelling. The crazy thing about this tool was eventually it would be able to also track Danny’s eyes only and he could communicate that way. Suddenly I was very intruquid and also a little worried – if he needs that much help communicating what did this really mean?  But I  have committed myself to calm and listening during this period of life – jumping into questions and pressing for immediate answers gets you no where. Listening (even taking notes so that I really focus and don’t let me mind wander) is the key. She explained that he will eventually be able to type again – when his hands get stronger and are less swollen. She also noted that he may be able to eventually talk with a voice support on the tractotomy – it just requires time and practice. In the meantime this could be a good option.

After reviewing the technology and her role, she went on to share how they two sessions with Danny had gone that day: EXCELLENT! He was able to make his wishes known, like asking to sit up. And when they asked if he could be photographed using the tool for their research study he was able to communicate with them well enough about his time as a child in Science Magazine (more details on the magazine here)when the CF gene had been discovered. That day they had completed two sessions with him and expected that the second session would be very limited and require a re-review of how to use the tool – as they have to do with most folks. But not Danny, he was able to advance having recalled everything from their morning session. She said this indicates to them that neurologically and cognitively is doing great. They expect he will do well eventually talking following the tracheotomy procedure and his progress with OT in general will be strong – using this tool and others.

As I sat taking all this in  and of course rolling my eyes at myself for thinking this was not a “real” update….. instead some of the best most exciting news we have received that would most certainly build my hope for the future, she said something else: “So I have to ask, is your daughter’s name Shannon?” After I confirmed that it was, she went on to explain that he continued to spell her name and wanted them to access the photos on his phone. She shared how he asked if I had been kept up to date and if she could contact me to talk about this session. Danny not only seemed clear and healthy…. as soon as his body would allow, he was back to being a husband and a father. The very roles he said if he was to die on that operating table, had made his life truly beautiful and he would be okay with what he had accomplished. When I stop and look at this experience for us from COVID19, to having our daughter while apart, to this transplant experience, I could get really down. The feeling of being discouraged would make perfect sense and the “should” game would be strong: “life should not be be this way”, “we should be with Danny”, “the recovery should be faster”……. instead taking in the reality of this gift, of this moment and how so easily it would not have happened if we were not in this place right now. To know that Danny’s first focuses are his wife in daughter when it could easily have been himself or the pain or the frustrations was incredible and I am continued to be in awe of how we are blessed in this unique life with these moments of pure joy.

This week Danny is having the final chest tubes removed, the tracheotomy size continues to be reduced and potentially removed, and we are awaiting for him to be moved to a rehab facility (could be on the Hopkins Campus or at another location).  Danny’s numbers, blood work and overall healthy is stable, the lungs are doing great – this is all extremely positive. The rehab will be working with Danny on his strength, mobility, and smaller tasks such as talking and eating normally again. Since later last week we have been able to FaceTime Danny and that has been wonderful. Being able to see Shannon, being able to talk to my husband – it has refilled my heart and mind with hope. I have been been reunited in the strength that I find in our partnership. The recovery road is very different and exceptionally longer than our last transplant experience  – but we have been gifted with the chance to walk it. We are feeling blessed.

Thank you so much for reading and remember to make it  a great day!

Jackie