Have A Little Faith in We

Thank you all for the continued prayers and thoughts as we work our way through a very odd visit. Sunday night we checked Danny in at Hopkins for a few days of meds planned to help with some of the lung damage they found on Thursday’s bronchoscope. There were a few questions and some potential gray areas, but overall a plan was in place and we had not seen any changes, so a straightforward waiting game is what was expected. 

Knowing we had a week with a few potential questions and an undetermined timeline, I left the hospital Monday evening with the plan of going to the hotel and letting Danny and I have that night and all of Tuesday to ourselves. He was hoping to just sorta zone out, watch some movies, hopefully get some sleep (that is still a big struggle), and just be. I was going to spend the day at the local hotel – just in case he needed me and knowing I had to be back for a full day of Doc meetings on Wednesday – just catching up on life: work, blog, maybe even go for a run and do my nails! The last few weeks we have been blessed with the flexibility to get used to this new world of transplant management and with the help of many family and friends – but sometimes you just want to breath and be alone and Tuesday was a day we were both looking forward to. 

Following a long shower, catching up on blogging, some phone calls, I got into bed with a movie and my new 2017 calendar – my love language. Just starting to wind down for the night and my phone lights up with a text from Dan “bad news I saw the X-ray and I am blocked”. As you all may know an intestinal blockage comes on from the CF complications in Danny’s gut and as a result of surgery on his intestines as a baby. These situations cause Danny severe pain and we were no longer watching, waiting, or focused on the lungs… it’s all focused on getting this blockage out. 

I returned to the hospital and did the full night shift with Danny. These blockages aren’t about keeping night watch- it’s helping him in and out of bed, working with nurses, wet towels, more blankets – and listening to Dan plead for relief (Thanksgiving blockage and June blockage). It’s tough – and has always been a possibility during this process, but something we desperatly had hoped would not happen (even though docs and other transplant patients said to beware). 

Two nights in a row of little to no sleep by this morning I was spent. Danny’s mom did the day shift while I slept the day away. Well almost away – my mom came at noon to bring me supplies as it looks like our visit may be extended. For all my momma friends- your kids may become adults, been when life bites back- they still need their moms. Thank you to our moms for being there for us on a tough day. 

This evening I write from Dan’s hospital room. There has been some movement and unblocking, so they have been able to give him medication to rest. During the blockages they need to limit pain medication and anything that slows down the body, for fear of not moving things out. But enough has started to progress and the need for rest, so he has strength to keep rolling, has become more important then just trying to white knuckle his way through it. Not sure what tonight holds-but for now grateful he is sleeping and for continued good support from the Hopkins team and family.  

We appreciate prayers and all the kind thoughts- they help! Hope to be back with better news soon. 

Jackie