Weekend – That’s A Wrap!

Happy March folks! It is officially……  birthday month!! And just so you know – for a lot of my favorite people too, so this is not completely selfish 🙂

 

Before we get all into birthday mode though, we got a big ole to do to get off the list – it is tune-up time! Danny will be heading to the hospital for what we call a “tune-up” – translation: intensive IV drugs to treat the mucus build-up in the lungs, coupled with very focused therapies and of course careful monitoring. Danny has being doing this song and dance for years and is a pretty impressive patient. He knows all the drugs, weighs in on the schedule, balances the specialists, and I am always so grateful he is comfortable in this role, with a skill for managing the many players. And to top it all off – he is really good at personal entertainment: reading, writing, movies, video games. It breaks my heart I can’t be there all the time to entertain and keep him company, but Danny knows the drill and can manage just fine.

 

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Signs of us two that I will miss this week February 2016
Over the last few years however hospital stays have gotten more complicated. Whether it be blood clots that screw up of picc-lines and require a restart of the IV process or when the first rounds of meds don’t work and we have to bring in the tough stuff – requiring quite an extended stay. All of these scenarios come with the added concern – is this one of the stays that will lead us to transplant. Transplant is determined based on a variety of factors, but a key element can be when hospital stays stop being successful in airway clearance.  These little visits that used to just cramp our style have started to be more concerning.

 

No matter how we feel and that being angry and frustrated would be justified, I have to remind myself of two very important factors: this is not kicking off with an ER visit and this is not a blockage (AMEN!). It is not uncommon for exacerbation to lead to an ER visit. Something pushes him too hard too fast or the meds stop brining the necessary relief, or it is the middle of the night – either way the hospital stay is all started with a very stressful, exhausting and scary ER visit. This time we can make a game plan for both health and home before getting started. And even better? This is not a blockage. The June and Thanksgiving visits were due to small intestinal blockages. Although these are not as detrimental to Dan’s lung health, they do cause severe pain, require that I live at the hospital, and present a huge and immediate STOP! to regular life. Neither of these cases are happening with this tune-up and I am thankful.

 

This week’s plans mean that this wekeend was all about hopstial prep. Even though I won’t be staying with Danny it requires a change in lifestyle: house, dog, contract work all on my own. Plus trying to go back and forth to be with Danny as much as I can. So we scrub cleaned the house, ran all the important errands, washed the dog, finished all the laundry, food preped for me and supply preped for Danny and finally we created a gameplay. Our goal for this stay is to help us get used to the idea of being out of Baltimore (2 hours away) compared to Fairfax (30 minutes away), and practice keeping life going, despite the health needs. A weekend to make a schedule, get organized, and work together was the perfect solution and has made the hospital anxiety that creeps up remain manageable for us both.

 

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Someone just learned it is bath weekend February 2016
Even through a focused weekend with lots to accomplish, we still had plenty of fun! For starters Fuller House was released on Netflix! Friends, I LOVED this show as a kid. I have seen every episode about a thousand times and know almost all the lines. Friday night we ordered pizza and binged on the show. The perfect zen state I needed before the hustle and bustle. Saturday was all running around, but ended with some wine and online shopping as Danny coached his final JV game for the 2015-2016 season. On Sunday we were blessed with a really special visit from our friend Caitlin.

 

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Fuller House Release February 2016
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My Medicine February 2016
There is truly no one in this world like Caitlin. She is so full of life, energy, excitement – and I am pretty sure could talk you into just about anything! We are friends from – yup you guessed it – O’Connell, but I did not come to really enjoy her until college. Those years are full of so many memories, laughs, and moments in time that I would never put on the internet for all to read – but LOVED playing them out with Caitlin often as my side kick. Fast forward a few years, she and Danny have become good friends – and she was part of our bridal party back in 2010. She is that boost of adrenaline and belief that life is a great adventure just waiting to be lived that always makes us smile so deep – and was the perfect break before a crazy week.

 

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Signs of Caitlin & Jackie Hangout February 2016
So there you have it – a weekend of lots of work…. but it helped to put us in the absolute best position to be happy, healthy, and ready for this week. These moments are never fun, rarely easy, and littered with frustrations. But it is also through CF and those darn hospital walls that Danny and I have found the most incredible victories won over CF – and the most honest truths about why we have chosen to do this life together. So we are ready to take what life is going to throw at us, with the best of our ability…. and in the mean time, just be happy all my underwear is clean!

 

Let’s get through this week and get Danny HOME! God Bless Friends!!

 

Thank you of reading and remember to make it a great day!
Jackie

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