Weekend That’s A Wrap

Another weekend come and gone and for the Bessettes it was extra quiet. On Friday Danny had his two month bronchscope that we anticipated being pretty smooth, but we ran into a few little bumps instead.

 

It was an early morning procedure, so we stayed in Baltimore the night before – enjoying some take out and hotel lounging as a good way to ease into Friday’s activities. Bright and early the following morning we got to Hopkins for some blood work and then off to endoscopy we went!  Everything was very smooth – and I even had the opportunity for some quiet prayer time at my favorite spot.
Baltimore Hotel Night  February 2017
Baltimore Hotel Night
February 2017
Just a little over an hour and half later, they brought me back to start the process of waking Danny (he is put under for these checks). On my way I ran into the CF doc who ran the procedure and she said all went great – we just needed the radiology folks to give the A-OK to the lung Xray and we were good to go! During these procedures sometimes things can happen with the scope or when the samples are taken. It is a less than 5% chance, but it can cause some complications so after every bronch they take an X-ray.  While we waited Dan woke up, had some cranberry juice and started to get dressed. He was feeling good and excited at the idea of heading out of here by 1PM! We could be home at 4 and actually start the weekend there rather than traveling to and from something medical. He hopped out of bed, walked a bit, showed that his strength was back and the nurses gave their thumbs up! We took off all the lines, zipped up his jacket and started to gather our things. As we did the final check, the curtain slowly started to be pulled back and our nurse’s face said it all – “ummm, the doc actually needs to talk with you, there is some deflation”.
We didn't leave at 1PM February 2017
We didn’t leave at 1PM
February 2017
Deflation…. the word threw me big time. Deflation? What? They said everything looked so good…. and it wasn’t just the word, it was our nurses face. She was so upset and that is when we knew something was off. The doc came back and she explained how this rarely ever happens, but when they took a sample to test for infection, it left a hole in the top right lung that was now causing some deflation. This is something that can be fixed and sometimes just by pumping gusts of oxygen forcefully into the lungs. So with that Danny was stripped down again, hooked back up to the monitors, and given a mask. They would be forcing the oxygen for two hours and then we would conduct another X-ray. If there was no improvement or worse, the hole had become larger then Danny would be admitted.
Post Procedure View February 2017
Post Procedure View
February 2017
Danny took it all in stride, got back in the bed and just started following instructions. Me – it took me a minute, but I have to say I was really proud of my ability to “blank slate” my mind. Of course a bunch of questions had popped up…. but whats the use? They had explained what happened and let us know what they would do to try and reverse it. Danny wasn’t in any pain and in two hours we would know something – even it was something we didn’t want to know. Later this week I will share the pretty incredible thing that happened to me this hospital stay that made me able to just accept.

 

Once Danny was settled, I opted to go take a break and get some lunch. The sweet nurse who had been so worried walked me out – this is a part of the hospital we aren’t as familiar with and they were under construction, plus she said she felt worried for me to be alone right now. As we walked she asked me if I was scared or if Danny was really upset. With that I inhaled and said, “no – not really.” She stopped and grabbed my arm and said “Really?” And I actually laughed a little to myself- it has taken years to get here…. knowing there is nothing you can do but take the next step – and so I was able to clear my throat and say, “yes, we are used to just riding the wave…. its a roller coaster but what else can you do?” As we got to my stop she said, I can allow you to bring the food back in so you don’t have to eat alone. I met her eyes and said “Oh no, I am fine alone – I will eat real quick and be right back”…. she just stared blankly and said, “I guess you are made for this”….. and with that I walked off back to my favorite spot….. this moment meant a lot to me and I hope that nurse knows how she touched my heart, seeing bravery I have been trying to portray for a long time.
Johns Hopkins Hospital My Spot August 2017
Johns Hopkins Hospital My Spot
August 2017
At the end of those two hours, the X-ray revealed slight improvement, but more importantly nothing had worsened. Danny still was not in pain and really wanting to go home – so they gave us all the instructions (like the exact location, name of and size of the hole so I could direct the ER folks if that is what ended up happening over the weekend) and we were off. Danny was to take it VERY easy. They even said no spirometry – the machine that measures his deep breaths by having him take in a big gulp of air and then blowing it out as hard as he can – for fear of further tearing. It seemed serious, it was a little unnerving…. but what else could we do but go home and that is what we did!

 

The rest of the weekend was spent lounging…..
Lounging Weekend February 2017
Lounging Weekend
February 2017
Putting all of Christmas away…..
Back to Normal Plus Our Second Set of New Lungs February 2017
Back to Normal Plus Our Second Set of New Lungs
February 2017
And enjoying some movies and Super Bowl…. but mostly I just tried to be so very grateful to be home. Truly – any time the thought flashed across my mind that we could be at the ER at any given second, I soaked up just being home. I loved every hot shower I took, every nap I logged, and every book I read from my comfy couch and not a plastic chair. Last weekend I shared the difficulty I have in shutting my brain off and I have to admit this weekend I was the opposite welcoming the ability to shut out the rest of the world. Knowing that I could just as easily be hidden away in a hospital, I was encouraged to hide away in our own little world instead.
Back to Normal  February 2017
Back to Normal
February 2017
Life is so very full and right now, with the state of the world, full of so much pain, anger and hate. It is so hard to take sometimes and I needed to escape. I needed to feel away… feel protected… feel enclosed even if only for a little bit. And when I had those moments I also was sure to say a prayer….. there is only one being who knows all and can save all from Danny’s lungs to the hungry, homeless, and dying. So be grateful for the moments of peace you find and lets all pray that each person’s heart can be gifted that same quiet, even if just for a minute.
Let's All Have Hope - Image courtesy of Pinterest February 2017
Let’s All Have Hope – Image courtesy of Pinterest
February 2017
Thank you so much for reading and remember to make it a great day!
Jackie

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