Hopkins – Remix Day 8 & Wednesday Updates

Danny's Grand Exit January 2017
Danny’s Grand Exit
January 2017
Well that is all she wrote folks…. Dan is out! Monday was his final day at Hopkins and he was released in the early afternoon. We were awaiting to see how his stomach faired with some food, followed by what the blood sugars had to say. Luckily they both turned out stable enough home it was!

 

Additional good news, since Danny stayed at the hospital through Monday, we actually had his Wednesday appointments taken care of on that same day. So here is the report from this week:

 

Danny’s Progress:

 

This past week was a challenge with the hospital stay. Originally this stay was to help fight the lung  injury that was found on the one month post-surgery bronchoscopy, but the trip ended up resulting in a random intestinal blockage. A bit of a whirlwind – but we have made it out the other side and Danny is going to take it a little slower these next few weeks at home, even though he is feeling pretty strong. We continue to work through issues of diet, blood sugar, and some medication side effects: swelling and tremors – but all things considered, Danny feels good and that his body is responding well.

 

Medication:

 

The steroids are the big focus for the moment. Last week they were increased to fight whatever they were seeing hanging out in the lungs, but now Danny is tapering off slowly every few days. That medication does wreak havoc on the blood sugars, so managing the necessary insulin continues to be in the experimental phase – but besides that the medication needs are stable. In fact Danny’s hicc-man (what is used for the IV medications) is being removed on Friday. This is an extra positive sign, as we move to medications that do not require IV access to be administered. Danny will always be on a decent amount of prescriptions – but taking them orally or through a shot he administers is the goal….. which as of this week we have reached!

 

Specialists:

 

Last week with the hospital stay it felt like quite a few cooks in the kitchen: hospital nurses, floor docs, residents, pulmonologists, transplant team…. but upon leaving the hospital we are back to focusing care around our transplant team and those that will help with blood sugars: dietitians and endocrinologist. There has been some questions around having the swallow specialist return, as there were a few signs of aspiration, but since his initial conversation with them while at the hospital this area has improved. Plus, post-blockage Danny is taking his meals very slow and that alone will help to protect the concern for swallowing issues.

 

Rejection:

 

Rejection will be a regular part of Dan’s health story for the rest of his life. The lungs can reject at anytime and this requires a lifetime of medications to manage. Danny’s lungs will never again have CF, the trade off being you have to manage the transplant maintenance. Upon entering the hospital last Sunday, the idea of rejection seemed to be floating around the air as we wondered about the visible “lung injury”, however the condition never became any worse and the response to the steroids has been good. So for now we are back to steering pretty clear of the “r” word!

 

Things to note:

 

When Danny first came home from his surgery everything was heightened: our fears of germs, Danny’s pain, and general adjusting to post transplant care. Naturally this required that life move a little slower. But with each passing day, Danny was feeling so much stronger and healthier he became really motivated to get up and moving. All of his blood work, PFTs (pulmonary function tests), and doctor exams pointed to a fast healing process, so we were greatly motivated to have him back living life and the doctors were encouraging of letting the fears rest a bit. So with each activity that Danny felt excited and ready to take on – we went for it. After this hospital stay however, we are trying to have him take it a little bit more slowly. Pick and choose how to spend his energy and to be keenly aware of the places that can present the most cold and flu germs during the winter months. No need to get crazy, but remember that we have a whole life ahead of us and it doesn’t need to be lived in the next few days.

 

Danny still is not able to drive. This is a big question mark and something that requires a lot of patience on his part. Poor guy is ready to be able to just take himself to coffee or a haircut, but in the meantime is appreciating us saving those dollars on gas.

 

The breath…. nope, still not yet. Danny will be starting physical therapy soon and this may be the catalyst to help get him closer to that first deep breath……stay tuned!

To read the other Wednesday updates, click here.

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

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