Have A Little Faith in We

Hi friends! Thank you all so much for keeping up with us on social media as we face transplant number 2. Danny was in patient when the call for lungs came through Sunday, May 10 around 3pm. Surgery was started at 5am on Monday, May 11 and as of today Danny is actively fighting through complications post surgery in ICU. Second transplants are extremely difficult and Danny and I went into this prepared for a battle. So when it’s what we got- I keep reminding myself: we are strong, we were ready for this, we can do it. Yes, the issues being discussed are of the neurological type which is extremely hard and scary…. but we can do this!!

Processing all that has happened and is happening is on going effort – yet both Danny and I liked that I had documented so much from our first journey in the midst of the first few days – so I have been considering what to write. Two things have come to mind: to share the messages I have written in my head and sit in my heart to my little family as we walk this. Danny, Shannon and Quinlan are walking (well sort of for ShanShan girl) this earth with pieces of my heart. And during this time parts of their personalities have come out so clearly- making me smile, provided comfort and shown me how God has so carefully designed our family to walk this road. So those will be forth coming…. But the other thing I have wanted to share is the incredible care Hopkins has provided during this weird time of Covid19. So that is today’s post.

It was my first Mother’s Day and since Danny was in patient and we couldn’t visit, Shannon and I were celebrating at my parents with my family. I had not heard much from Danny – only a quick call in the morning – but that was pretty normal these days. He is so exhausted conversations are minimal and attention span is short. But I was still a little surprised he had not mentioned much about Mother’s Day. Around 3:30 he FaceTimed me and asked what I was up to…. which I started rambling on about our at home brunch and presents- while thinking it was a little odd he has not said or done much for Mother’s Day (Danny is pretty famous for the “text card”- he writes on a picture of ours a little message). Until I suddenly noticed how watery his eyes were- I said “Babe, what’s wrong?”’And that is when he sorta squeaked out “they have lungs for me”… and then our roller coaster of doing a transplant during COVID19 started.

Current rules do not allow for any visitors at the hospital. Our team had hoped maybe for this surgery there could be an exception made, but so far that has not been the case. However no matter the rules Danny and I have prepared that I would not be able to be as present because of pregnancy and newborn life. We knew this time would be different and have made a lot of use of FaceTime, file sharing, photo sharing and videos to help keep us connected. Danny has watched his daughter be born on FaceTime … we have learned how to do this life…. just had no idea the rest of the word would have to do it too.

This being the case the hospital has made some awesome things available to ease the fears and pain this sort of experience brings on. There are iPads in ICU for Dan to use and one of the jobs the nurses have taken as part of their role (an already very busy and stressful job) is to help with family FaceTimes and calls. Our doctors have allowed me to sit in on morning rounds with them (fascinating and only makes me love our hospital more… some incredible minds at work) and we have access to the floor receptionist and Dan’s nurse-especially as he is not awake or able to communicate. Our social worker is working on some other options to make us feel as comfortable as being bedside and we will even have a zoom call with some of the docs later this week.

In terms of Danny’s experience and care this go round, there have been significantly more decisions I have had to make and consent for as he can’t do it himself right now. This is new for us and the team always takes extra care to call me, review all the details, and answer my questions – even in a few emergency situations. Our team that is not working directly on Dan now are emailing with me and checking in. I have never felt more connected to our team, this hospital, or being a strong partner for Danny – all while we are in a pandemic that won’t allow me to be there.

Our journey is only getting started, but already I felt compelled to share how amazing this experience has been, under the most scary circumstances for us to date and when the world is in such a tough place. Every person from admin to a top surgeon has been kind, as transparent as possible, used please and thank you, and shown the truth: we are all humans hurting in this tough time. And I have done my very best to ALWAYS go above and beyond to say thank you, please, if you don’t mind, may I take up some of your time….. it would be easy and even understandable to say we deserve or should have or need XYZ… but by being open and kind I like to think I show them, we are in this together.

If you’re facing a medical need in this scary time be sure to be polite- but also just ask for help. For instance our social worker has been a huge source of support. In a world where being rude or demanding can be celebrated- maybe a silver lining of this time is a little kindness will return as the normal!

More details will come about Danny when I can…. until then thank you for the support!

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