March 2016
Family, friends, readers ….. Danny has new lungs. Hopefully you have been able to follow along on Instagram, Twitter, or Facebook – because since about 1AM on Thursday, December 1 we have been in recovery mode. The days and times are all a blur….. Danny, myself and our parents are living not by calendar dates or by a watch, but milestones and check lists – making the blog suddenly a little quiet. The reality is we are forced into survival mode, yet the part that is so weird is how very different this experience is compared to past hospital stays – there is incredible joy.
There are so many little details and big moments I want to be sure to capture. This story is nothing short of a miracle for our family – even as people of faith, we have been blown away by the many ways we are seeing God’s hands guiding this whole experience. My hope is to continue to capture and log all these moments here on the blog, but in the meantime, I think the magnitude of what is happening in our world has completely distracted my attention span for story telling. So for now the big things you should know and a few rambling thoughts…..
- Danny was out of surgery by about midnight and has been breathing ON HIS OWN since about 4AM that same day. He left surgery intubated, at 4AM they pulled the breathing tubes and placed him on a bi-pap machine that he wanted nothing to do with for long and eventually he moved to just oxygen. That was on going through until about Friday AM and now…. just regular Danny breathe. This is HUGE. And when I watch his chest rise and fall I am filled with pure awe.
- Danny will remain in the ICU until he passes the 5 day mark and during that time it is myself and his parents Pat and John only. My parents visited with him immediately after surgery, but since then they have been in the waiting room or at the homestead. Since my mom has not been in the room since that 1AM peek, the medical staff does not know which family she is here with – so when they commented on the young transplant guy who is moving so fast it is incredible…. they didn’t know we would hear it! The halls are literally buzzing with excitement with us….. it is incredible.
- We have been lifted up in positive thoughts and prayer by so many, we don’t even know what to say. The message and outpouring of love literally takes my breath away. Whether you are family, close friends, or some special memory holders who we haven’t had a chance to catch up with over the years… each email, text, and social media message has evoked such a powerful hope – I can’t worry about any of the little bumps that have popped up or the looming “what-ifs” that like to wander their way into our room because the power of our tribe outweighs them so dramatically. In fact, I am starting to get weird looks for the way I skip down the hall and how much I smile….. when we are in the cirtical care unit. My heart is so full of love and inspiration from everyone’s desire to walk with us and help – thank you.
- As this continues to unfold we will experience shifts, changes, setbacks and the need for all types of help. We are grateful so many are willing to jump in and join us, it is hard to comprehend why we deserve this …. but also need to recognize we are lucky it is being offered and need to accept it. If you have reached out and not heard from us – my apologies, but don’t worry if you want to help I bet we can find you a job! In the meantime, we ask to limit the help to messages and those tasks that have specifically been requested. We can’t have visitors right now and neither us or our families are living at home quite yet so the to do lists are not fully established.
- We have found a few needs that needed to be addressed right away: Quinlan, clothes, hotel, communications, post transplant requirements, bills, work …. needs that we actually outlined last week to sit down and prepare an action plan for this weekend…. oops! Dan’s being on the list for only 48 hours when he got the call was not recored breaking, but our surgeon said close. Basically: we were very ill prepared. This means our internal tribe had to think for us…. my pup has been cared for….. our house has been picked up and is being organized for a good scrubbing (required after transplanting), the list of post-transplant needs are being shopped for, missing undies have been delivered, and even our bills are being managed for us. We have teams going to Target, the grocery store, offering rides and just thinking for us. I know there are so many who also want to fill this role and we are not going to be shy with you people either….. but there is a special thank you that has to be given to those who thought for us and turned their lives upside down to help us out. Especially our parents whose lives have completely stopped too.
- My post of “what you need to know about being on the list” that would address some of the questions folks have now will be a little late…. but I still hope to do it so you all can better grasp where we are…. if you have a specific question, leave it in the comments and I will see if I can address it.
- Nice strangers are helpful ALL*THE*TIME. When I am not at the hospital, I am not comfortable with leaving the Baltimore area, so I am staying at a hotel. The valets at our hotel have gone ABOVE AND BEYOND to make my life easier. They know I come and go from Hopkins, so they could assume whats going on, but have never asked – just help me. They have inspired me to be a little kinder – you have no idea whose life you may be impacting by just making it a little easier. Oh – and on being happy – the Starbucks Baristas in our hotel are not only amazing because they keep me going…. but because they smile and wish me a lovely day and prepared my cups extra hot and in permanent to go cups so they last the length of the hospital day. I am using this experience to say: let’s all be a little extra kind – why not!
- Hearing from complete strangers is really amazing. That again is thanks to all of you sharing our story. I have been so touched by people compelled to take a minute and reach out to a young couple who is facing the delicateness of life. I appreciated their sharing of their thoughts, offering of prayers, and even sharing their own story that led them to us. I have one sweet reader who heard about us from three different friends – is this world teeny tiny or what!
- I miss Danny. Today is the first day that we have actually talked for a substantial amount of time – addressed responsibilities, shared our different experiences through this, laughed at some happenings – and Friday night when I was at the hotel he texted with me. This seems either really obvious, of course everyone knows I am thrilled it has gone so well so far…. but it is just a thought I can’t shake – Dan is my other half and when he is even just sorta dormant, I feel like a piece of me has gone missing. I went to go text him about 30 times while he was in surgery – just what was happening, the place we ordered dinner from, the exchanges between family and friend as we wait – we share a life, every little detail, and in a weird way, I am so blessed to be able to realize how precious that little stuff really is!
- For all of this to be possible, a life was lost. This is a part of the story that is important – but I am just going to say the truth: Danny and I aren’t ready to talk about that part. I am honored to be surrounded by people who posted support for us and prayers for this generous person and their family…. but when I think that we were called with the answer “you can live” and another wife or mother or sister or father got the call that their person has lost life, I am left with a sadness that I have never felt before. And we may have not organized our bill drawer or picked up or socks or packed our transplant prep bags – but we did agree this is something Danny won’t be ready to really comprehend for a bit. For the sake of my husband and the emotional journey he is about to experience, while fighting for a new life, I ask that everyone please respect these feelings.
As we continue with our journey I plan to use our HALF Blog to share our updates…. explain what we have learned…. thank all you amazing people…. and tell our story, so thank you for your patience while I find my footing. Oh and the question on SO MANY MINDS….. how does Danny feel being able to breath? Well he hasn’t quite taken that true deep breath yet….. but we have talked about it. We both know this will be a once in a lifetime moment and hope to capture how it feels. Thank you for asking and sharing in our excitement!
And finally as Danny sits up watching a little hockey on his laptop last night – this is a new thing as Pat and Danny only got through30 minutes of a movie in Friday night….. he has asked that I thank everyone for their outreach to him. He has MANY texts, Facebook messages and emails and he is starting to scroll through them a bit. He isn’t able to focus long and typing is still a bit of a challenge, but seeing the many folks coming out of the wood work has been touching and he really appreciates it. He may not be able to get back to each person individual, but he is reading and enjoying every single one!
Thank so much of reading and remember to make a great day!
Jackie
October 2010
Have A Little Faith in We 
Beyond happy to hear how well everything is going!!!! Happy to help if you need anything!!!! Sending more prayers, positive vibes and love!
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