Hey friends! Thanks for your continued prayers and kind words! Today already had a scheduled blog post, but as you may have seen on social media we have had some excitement with Danny, so I first wanted to give an update on our status.
Blood sugars and GI trouble have been a common challenge for Danny post transplant. Going into Sunday night we were thinking he may have another intestinal blockage. In reaction to those symptoms, Danny started doing all he could to unblock the intestines. And just as quick as it had come- it began to move out that Monday. The only trouble- he kept going and going and going…..come Tuesday Dan was dehydrated and not able to give enough blood for his med level check or go to physical therapy. So they sent him home and said pound the fluids, but if that doesn’t your work gonna need IV fluids. One of the hardest things about the medical stuff is not getting too ahead of yourself. Do we just go to the ER? Do we go to Hopkins? Should we just try to focus at home on fluids? We landed on the last answer, and did our best to just motor on, but admittedly this is very hard for me – I like a plan! God is determined to teach me patience and to go with the flow …..
Eventually Wednesday came and Danny felt no better and that AM’s blood draw also couldn’t happen. So it was decision time. Dan spent the day still trying to take fluids, but mostly conversing with Hopkins about what to do. We went back and forth on quite a few approaches: stay home for the night and then go check in at Hopkins in the morning, go through the ER at Hopkins to get fluids and be checked and either go home or be admitted, go to our local ER and see how fluids go…. and we ultimately ended on our local ER. Danny would get fluids , do a med check (it has to be done 12 hours from when cetain meds are taken and he takes those meds at 9:30am) and see how his levels are. If he stabilizes and the med levels can be adjusted from a far, during the early hours of Thursday AM we would likely just go home. If it doesn’t work, go home early Thursday AM, sleep and then get to Hopkins. So we went Wednesday night really hopeful we could just go home the next day.
Upon arrival Dan’s levels were taken and his blood sugars came in first – about double what they consider a higher level to be. He was definitely dehydrated, as even getting the IV in took 9 tries and an ultrasound. Finally they took his med levels, but since they are a smaller ER getting those results back immediatly wasn’t an option. So the fluids started and an insulin drip was hung. Quickly we were told, due to Danny’s high blood sugar results it was required that he be admitted to a hospital. We had come to this small stand alone ER that is not directly connected to a hospital thinking if admittance was required we would just leave and go to Hopkins the next day- but we were told the only way Dan was leaving this ER was by ambulance and to a hospital tonight.
After further discussions with Hopkins, the doc at this ER, and between us two we decided to have Danny admitted to the Loudon hospital – about 10 minutes from our house. Everyone was somewhat confident (both docs here, at Loudon, and at Hopkins) that if everything went well with insulin and fluids that only the meds adjusting would be the question mark and that could be managed from further away. And in fact we probably could have Danny home on Thursday. So Dan climbed aboard his ride, the ambulance, and I got in the car to go home. At this point it was 2:30AM and we felt like a chance for a good night sleep for me (plus taking care of the pup) would be important.
Dan’s night at the hospital was as expected- no sleep, they tried to start more lines with little success, and just a lot of waiting. Waiting for the fluids and insulin to work… waiting for the docs to review the med results and talk to each other….waiting for the morning to come so some of the normal docs could weigh in and not just the night shift. By 9:30AM Dan called me and said Hopkins had called, they would be making a plan shortly, and waiting to review the meds with the Loudon team. So thinking we would have answers soon and maybe even need to get Dan discharged shortly – I jumped up, took care of Q, ran by Starbucks, and was at the hospital by 10:45. And then we waited…. and waited … and waited… until at about 3 the nurse said the docs had been playing phone tag all day (I work in an office – I get it – but that is hard to hear as an excuse when your just waiting) but a plan was in place and the doc would be in shortly to discuss options. Shortly was only …. hours and hours later….. the verdict was discharge and Dan to return to the Hopkin’s lab tomorrow.
The belief is that the bloodsugars have been neutralized, the dehydration is no longer a factor and the kidneys have gone back to normal. All of these things being stable means Dan can be home and we just have to get a handle on the med levels. The blood work tells us that they aren’t quite right- but there is no proper mixture, it’s just trial and error. That experimenting will begin tomorrow at the Hopkins labs and if these other factors remain stable – we can work on what the lab results say from home (well until we go back to Hopkins next Wednesday and Friday for previously scheduled appointments and a bronchoscope).
This game is normal. We were blessed with how perfect the surgery was and how smooth lung recovery is going, so it can feel weird that we are back in the hospital for all the extra stuff… but that’s the deal! Transplant is complicated – no ifs, ands, or buts, and this is gonna be where Danny has his trouble …. but we are figuring it out. As one nurse said to me today- one day he will just wake up and all these meds won’t send him for loop anymore, his body will adjust, it just takes time. I thought well we certainly are learning ALL ABOUT WAITING!!!!!
Thank you all for your prayers, kind words, and grace for the space to share our story. This blog makes me feel like I am not alone on all the twists and turns – and there is something very comforting about that experience.
Thanks so much for reading and remember to make it a great day!