The Week from H-E- DOUBLE HOCKEY STICKS

Hi friends – let’s just jump right in shall we? If you follow me on social media then you already know – this has been the week from H-E- DOUBLE HOCKEY STICKS. At first I thought of coming up with a more eloquent title or giving a nod to how there were good outcomes to this bad week… but when I saw my mom write to someone (my mom who is about as non-emotional as they come and always keeps going with no complaint) “worst week ever” in an email…. I decided to just own it. This was one of the worst weeks ever.

 

Last post was while I was still at the hospital on Monday and I spent the night. That whole day and into the next day, I stayed because Dan was experiencing such highs and lows. The mix of trouble with his blood sugars…. mixing of different meds… and the level of pain (Dan said its like someone coming in under your rib cage and just yanking down) – he would go from feeling FINE to miserable. To help they are constantly trying to regulate the sugars, working the proper mix of antibiotics, and continuing to encourage the balance of feeling a little and feeling better. Throughout the week different things were tried… different approaches made… but in a lot of ways, the same issues still exist. In fact just yesterday they tried a new mix of meds and today we started a new insulin regiment. This is a work in progress – even one we might be able to start doing from home – but until Danny is just a little more stabilized and comfortable, he will remain at the hospital. Needing to stay put is always hard news, but the reality is this is the best place for Danny to be and feeling better will remain our number one priority.
Jac and Dan Summer 2016
Jac and Dan
Summer 2016
On Wednesday Danny had a meeting with the transplant team. And it all comes down to this one phrase that really put it in perspective for me: Danny is a very sick CF patient and a very stable transplant patient. CF is winning – and Danny will need a double lung transplant. The team at Hopkins would like to see him list sooner rather than later, but understands Danny’s desire to keep pushing these lungs as far as they can go. And the truth is, even if he listed he is not sick enough to be at the top of list. So technically we aren’t losing any time in not listing right now…. but we do need to be getting ready to list. Danny is going to take the next 4 weeks and focus on the areas of: nutrition, exercise, sleep, and stabilizing. If he can get into a regiment that brings him better health and offers a sustainable path forward, we will continue to remain off the list. If not – the list discussion is going to be more serious. This is a very difficult decision that I have tried to outline here, attempted to talk my way through, and utilized my notebooks to make charts and notes and lists….. but the truth is – it is just hard. Nothing will ever make it easier and we both are just praying really, really hard for clarity on the path forward, for Dan’s health to stabilize no matter the decision, and for the future.
Image Courtesy of Longdistanceloving.net February 2016
Image Courtesy of Longdistanceloving.net
February 2016
For this moment right now….. continuing to work on the meds and sugars issue is important whether he listed or not – so that is what we will do and that is also what will determine when he can come home. The ideal is to have him home – not just because that is where we want to be…. but that means we have found a way for Danny to be comfortable and healthy for the next stage, no matter what that might look like.
Just gotta keep going no matter the mountain... January 2016
Just gotta keep going no matter the mountain…
January 2016
While we were working through these items this week, I was also working through a very difficult moment with my family. On Monday while my grandmother was walking our family dog, Walker, he was struck by pick-up truck and after 24 hours of monitoring, trying different things, and praying – on Tuesday night we said our good byes. Walker was such a special dog – in fact looking back this week we have all been in awe of the full life he lived…. I will do a post on that later this week – but his recent role had been one no one saw coming and has been a God send, Ganmommy’s charge.
Her Favorite BBQ Guest July 2016
Her Favorite BBQ Guest
July 2016
The choice for my grandmother to move in with my family was a very difficult one. She has always been a very resilient and independent person, but finally at 92 it was time for her to not be on her own. She had started to become more confused and we worried the stress that was on her for caring for her home, the same one my mom grew up, was making her worse. So last fall we had her come to stay with my parents just for the winter and after just a few weeks we learned two things: 1 – she did better when someone made sure she was eating, watched her fluids, and she had regular human interactions and 2 – even better with less stress and worry so she could think clearly, she was still way too confused to be on her own. And that was that… for a time she continued to ask about going home, but finally she settled in and just as she always does, put on a smile and made the best of it.
DHI Conference May 2016
DHI Conference
May 2016
One of her biggest worries was being a burden – for my mom, for my parents, on our family…. and so when she found a job, she made it her mission to take it VERY seriously. My Ganmommy took care of Walker. OOO folks it was a match made in heaven. Already she was a dog person – she has had quite a few dogs in her day and she loved them all fiercely.  Walker had been part of household for over 12 years and she was always sweet with him and enjoyed his company…. but when she moved in, it went to a completely different level. She talked to that dog ALL DAY LONG. She walked him several times a day – in fact he has always been so good, we did not have to use a leash and he become VERY accustomed to not having one on. If any of us even dared to put one on he would just stand there and not walk until it was promptly removed! But not Ganmommy, he let her put that leash on and off they would go. We even laugh – he never walked around just the little court. It was like he knew- either have a real walk or it wasn’t worth it – but for her, he would go anywhere. Close or far…. fast or slow…. they were a pair. As she sat in the yard, he sat with her. As she wandered the house  – he was never too far behind. Each night after dinner as he completed his little ritual (going to get his big stuffed animal “baby” to throw about), she would cheer him on just like it was the first time she had ever seen him do it. From the moment she got up to the moment she went to sleep – “O Walkie, you are the best doggie in America” and she would feel so good like she was taking care of him…. yet we all knew he was taking care of her too.
Best Friends Walker & Ganmommy May 2016
Best Friends Walker & Ganmommy
May 2016
This news broke all of our hearts and brought an added element to a week that was already hard. Suddenly the days felt just like trying to take a deep breath in this unbearable heat…. stifling.
Ganmommy and Her Best Friend Walker May 2016
Ganmommy and Her Best Friend Walker
May 2016
So there it is a pretty rough week without a lot of solutions discovered. Most days this week I have woken to a pit in my stomach, to eyes that feel puffy and swollen as I try to open them and led to a lot of just staring into outer space. It was tough, ya’ll ….. but through the tough there were some moments that surfaced that I would never have seen or expected. And those deserve a mention too….. in no particular order and I am just diving in with no intro to each:

 

After 6 months of choosing to keep a safe distance, my sister Katy and I reunited. If you have been around here before you know that Katy and I have spent most of our lives close. We would fight something fierce…. we are complete opposites…. but we are sisters and were best friends. When news of her pregnancy resulting from a difficult relationship surfaced it drove a wedge between us that I did not see easily removing itself. Neither of us wanted to be one of those families who were divided, but we both were just so hurt by the choices and feelings that we couldn’t really find a way for repair right now. As she welcomed Lola Grace – I faced a tough season with Danny’s health and we both felt for everyones’ sanity we would just remain separate. But the night of Walker’s accident we came together. We had to be a family in this moment – period.
Jac, Mom, Katy & Aunt Tama
Jac, Mom, Katy & Aunt Tama
Coming out of the pet hospital that first night, Walker looked good. Actually, we had gotten good news and had reason to believe all could be well….. and when we stopped to all take a sort of collective deep breath…. we looked around and there we were…. one family…. and just the originals – no spouses, no extended family…. just us Heppes (with Grant on the phone on and off)….. and it hit me, as we had several cars there, we are all grown up and yet still very much just kids with our parents. Oh – and the next generation too… Lola. Life is funny and maybe just one big cycle after all.
Heppes Kids Christmas 2012
Heppes Kids & Walker
Christmas 2012
Tuesday afternoon my sisters, mom and I loaded into the car and made the painful trip to Walker’s hospital to give our final love. We sat in silence for most of the ride – the occasional sniffle or Walk story…. but for the most part we said nothing. It was in this moment I was so grateful for my family…. there are just those situations that require certain people and I could not have faced this moment with anyone but them. My heart filled for the love of our bond and I was reminded we are stronger as a family.
Heppes Original 7 November 2014
Heppes Original 7
November 2014
My mom is one of those people you can’t do anything for. Minus the rare computer help, I can’t think of anything to do or buy or offer that she has not already done! She always knows the thoughtful words to say, she never misses the opportunity to just show up, and if you think you can get ahead of her on anything – you can’t, the woman doesn’t sleep. My mom gives me advice for – EVERYTHING, always answers the phone, and usually nails the balance between stern and loving…. there are very few moments I have been able to truly do for her. One being when my grandfather was in his final days and she was just too exhausted to drive home one night after caring for him…I came and picked her up. As we journeyed back to the house – about an hour – she settled in and finally slept – snores and all. At age 17 I knew I had actually given my mom a gift she needed- a moment of relief in one of the hardest times in her life – and I was so grateful. And that Tuesday night – I was able to be there for my mom as just us two saw Walker into his final resting place. I was there for my mom (and my special pup)…. and I am so grateful.
Jac and Mom Summer 2015
Jac and Mom
Summer 2015
This week makes you feel it all. As we dealt these two painful experiences, my mother-in-law also had a loss in her family…. it just seemed like every where you turned there was a delicate and painful situation lurking.  And through those moments … I was so incredibly grateful for my partner in this life. Danny, while dealing with so much of his own health, was never more than a text away. We both talked about the same things over and over again… we comforted each other…. we said the “it will be okay” statements and when I felt so exhausted – to the core of my bones…. he said the I love you that needed to give my heart the peace to finally rest. I just don’t think I could do this life without him……. and I may say it all the time – but it felt especially true this week when I had nothing left to give…. at some points neither of us did. We could not always be careful or sensitive with our words or thoughtful in our actions, we were in survival mode and yet we had this smooth partnership where we filled the gaps for each other, picked up the slack and made it through the week feeling more connected…. when we really had just been running around like chickens without our heads and not able to really connect at all. Yesterday as we walked the hospital halls – I forgot where we were….. I temporarily unloaded the baggage of he week and just had my Dan…. we talked about a books to read and wandered the historical part of the hospital – and I actually got butterflies from his dimples, and simplistic joy from his jokes…. if we can do that for each other, I think we are gonna make it just fine in this tough life.
Jac and Dan Summer 2015
Jac and Dan
Summer 2015
And the final for silver linings – the team at Johns Hopkins has been excellent. The doctors have spent so much time with us – answering every question, addressing every fear…. even at one point Danny was asking something and cut himself off saying “never mind that is dumb, you of course know whats best” and the doc encouraged him to keep going, keep asking…. that we are a team. There are so many medical professionals out there who are brilliant, but have the bedside manner of a doorknob. Or worse, are cocky and know it all – even when they might- and make you feel like a check list on the to do list instead of a person. With our team of docs and their supporting staff that hasn’t been the case at all, which makes the question marks and rough patches a lot easier (says the none sick one…).
Baltimore Hopkins Stay Summer 2015
Baltimore Hopkins Stay
Summer 2015
So yes – it was the week from HELL….. but in those moments we also had quite a few shiny spots. I always have loved the line, “if you want to hear God laugh, tell him your plans”, yet it always seems to reference more of an odd turn in life or an unexpected surprise…. its rare that I associate it with deep dark despair and pain, yet even in those moments…. if you wait His will does rise and so will the good. This week is over an another will be here in just an hour – so I am grateful for the good, happy to have survived the bad and hopeful for the future…. even if just for that coffee tomorrow morning. And thank you to all of you for your reading, loving, supporting – we have been so so so touched and grateful for the love, the hugs, the kind words and the encouragement. A special thanks for letting me throw it all up here – not a lot of creativity…. maybe a bit confusing… but it did my heart a lot of good to just get it out.

 

Now let’s all have a better week – shall we?

 

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

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