Tonight I write while sitting next to our beautifully lit Christmas tree…. as of last Thursday evening Danny is HOME!
During my last post I shared with you that Danny would be required to compete full 5 days in the ICU and then move to the step down unit. This is a Hopkins policy we were forewarned about many times – “He could be doing cartwheels down the hall and still he will need to stay in ICU for 5 days”, and then on day 4 Danny moved to the step down unit. Not only did he move – he walked himself there. As his mother and I sat in the family waiting area, near the nurses station, we got a kick out of overhearing the conversation “that is the new transplant patient???” ….”Yea – the one WALKING in”…. our surgeon later shared with us none of his patients have ever walked themselves to the step down unit.
All of the signs of Danny doing so well we were fairly certain home would be sooner than expected. Days spent in the hospital following the ICU vary for each patient, so we had no idea what to expect. The fastest I thought I had heard was 10 days – but to assure I was not too disappointed, I tried to get used to the idea of several weeks. We had done that before with just a regular old tune-up. But just like everything else with this adventure, we all were very pleasantly surprised to welcome Danny home exactly a week to the day of when we saw him in the ICU for the first time following the surgery.
As you all know our past welcome homes felt like the end of a battle. We had won the war against the hospital hour-glass and our waiting was rewarded with Dan being able to complete his treatments at home. Home IVs, nursing visits, med changes, pharmacy visits, and camping out on the couch under extra blankets with Netflix streaming was nothing new. This return home would be different of course – we weren’t managing CF we were protecting Dan’s new lungs, but I am able to admit I had no idea how different we were talking.
When trying to describe what this home experience has been like I have referred to what new parents must sorta feel like. You get all set up with the sweet nursery, cute clothes, and every gadget you could possibly need. Images of rocking your little one to sleep and quiet nights cuddled on the couch dance in your head…. and then you get home and your little bundle of joy won’t stop screaming. You are sleep deprived, your cute little nursery looks like a bomb went off in it, and instead of cherishing all the firsts – you are living in survival mode! Last Wednesday my mom and I set out to get all the supplies. This included new bedding, tools to make a cozy/functional nook for Danny in our living room, and a variety of other recommended items. After MANY hours and even more dollars I figured we had covered all the bases and I spent the remaining hours (pretty much all night) excitedly setting up our home.
It was great, my a-type was one thrilled gal and I felt prepared, in control and ready to hunker down and just sorta relax. Yes, we had nothing short of a million meds to help Danny keep straight, but that could not be too hard to manage between Christmas movies and warm fuzzy PJs. I had a vision of how smooth it would all go – and then Dan got home and I have learned this is a whole new ball game!
Right now we are still in wait and see mode. There are so many questions left to be answered on what Danny’s recovery will require and subsequently look like. The feeling of being settled I had anticipated is still a ways off. In some ways I think that is why I have had hard time finding what to say or determine how to exactly move forward. So while I still wade through the waters of this completely unknown territory – I figured the best next step is to share what we know to be true today.
What we know for sure:
Danny’s new lungs are in pristine condition and the surgery was textbook perfect. Any of the issues we are facing now are not a result of the transplant itself. There is always the chance this can change and most patients do experience some form of rejection along the way – but to have a surgery that does not already show any signs of a problem is a HUGE milestone.
What is to be determined:
It is common for CF patients to have a form of diabetes. The requirements to take blood sugar, measure and inject insulin, and be aware of your diet are all there – but for Danny it had been minimal and often would dissipate with the changing of any drugs (certain medications tend to cause blood sugar issues). However transplant and the myriad of required medications afterward pretty much guaranteed that Danny would have some sort of diabetes and as of now it is 100% full blown. We have had to completely change his diet, learn to administer insulin shots, and try to (on the fly) figure out what the spikes and drops mean and how to quickly right them. Often blood sugars are the cause of Danny feeling so terrible.
In exchange for lungs – this feels like a small detail – but the truth of the matter is it really has completely changed how we live and thus making the fun of being home – access to your own kitchen and food – not so fun after all. At this time we do not know if this will be for the remainder of Dan’s life or if the reduction of medications over time will allow for him to return to his more fun diet. We will just have to wait!
The tough stuff:
We have a few items that are not permanent, but make recovery slow, can be a little scary, and are really uncomfortable for Danny. Luckily these are not forever and it is just a waiting game….
Right now Danny is still having a lot of difficulty swallowing. This is a mental and physical frustration and adds to the fear surrounding what we are to be feeding him. He has ben given some exercises to do, encouraged to have thicker liquids (requires the body to slow down and asses this is food and for the stomach not the lungs), and eat very slowly. Again you have to stop and say in exchange for lungs, this feels negligible – but when you are trying to eat and feel like you might choke it really is scary. Plus this takes out a lot of options we would be considering with Dan’s new diabetes restrictions – like eating salads.
Additionally Dan is starting to swell on his feet and ankles. It is amazing how fast it has happened and how sensitive it does feel. The good news here is if he continues to lower his sodium intake, increases his water intake, and continues to take walks this is manageable. But this is a reminder that swelling is a part of this journey and most often is not left exclusively to your ankles. It will be a bit of a challenge for Danny and the speed at which his feet have become unrecognizable is a little unnerving, but this just has to be taken in stride and know that it is not forever.
Due to Danny’s double lung transplant his sternum was broken, the lungs had to be placed into his chest cavity following the extraction of the old lungs – and there is adequate suturing for that effort, he has a large incision on his chest, and 4 actual holes where the tubes to drain the excess liquid from the new lungs were placed. All of this causes a lot of pain and discomfort. A position for sitting or resting that might be good one hour is suddenly not so good the next. Laying down is not presently an option and the need for pillows is huge – yet it seems one day a soft pillow is best where the next we need a hard one. Lifting, stretching, reaching – basically doing anything for yourself- is pretty impossible. When Danny was in the hospital pain and immobility were the worst issues – but with the removal of the tubes over time these things continued to improve vastly every few days. Now we are just playing the time game without a lot of changes, besides the slow healing process, so frustrations mount a little quicker. This is normal though and not forever – so gotta just keep chugging!
After laying out our food challenges, I want to take this opportunity to thank everyone for the incredible kind, thoughtful and generous requests to make food for us. Eating is certainly a challenge around here – but the difficulties with diet choices (to include: limiting salt, sugar, carbs, and no lunch meat, soft cheeses, as well as being very careful with raw fruit and veggies etc) and the sensitivities around swallowing just makes this effort difficult. So thank you so much for the offer to help and if this changes – we will let ya know!
The gift of a promise for the future is the most incredible thing, that we still can’t seem to really comprehend. But the road to feeling all of that freedom can appear rocky with a lot of these new experiences. What this really means is that I know I need to get back to that faith message we found just a few weeks back. Just because we are not waiting on the lungs, doesn’t mean we aren’t needing to rely on God’s timing for all of these new experiences. And so the continued messages of prayer and good thoughts are so greatly appreciated. It has been a wild ride and the peace and comfort we do find is thanks to all the thoughtful expressions of support.
Thanks so much for reading and remember to make it a great day!