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Jailbreak

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 After a total of 14 days in the hospital and 9 days post DLT surgery I was discharged on Friday April 11th. I was apprehensive at first when my transplant team came to me on Tuesday and said that I would most likely be ready to go home on Friday. In my mind there was no way, I still needed help getting in and out of bed and assistance while walking but apparently I was ahead of schedule on my recovery. According to my team of doctors I had exceeded their expectations and they had set a high bar for me. Each day a new accomplishment and getting a little stronger, I decided on Friday morning that I was indeed ready to go home! My nurses, techs and doctors were excellent. Of course I had my favorites . While I was in the transplant step down unit some of my nurses had requested to have me as their patient for their next shift.  I was flattered, however they really wanted me because I was the easiest patient to take care of on the floor.😂  I was discharged at 5:30 pm on Fri...

Chill Day

 Today was pretty chill here at the JH Inn. My day started at 4:30am after my nurse came in to check my vitals, times have certainly changed that used to be the time I would get home from a good night of shenanigans. This mornings excitement was that I was finally cleared to drink fluids after 9 days. After passing the swallow test I had Brian run and get me a nice cup of ice water. As most people know I only drink clear fluids with no carbonation IYKYK. More blood draws, medications and vital checks rounded out the day with 3 laps around the ward. A nap and then some dinner, the day passed quickly. Today after some reflection I thought of my Father as today would have been his 96th birthday. Throughout this journey I would pray to my Dad and ask him to make this all go away, to watch over my family and ask him and God why this happened to me. I thought to myself there has to be a reason that God paved my path in this direction. I’m still trying to figure it out as I continue to li...

One day at a time

 Hi Everyone, Today was a good day! My lovely nurse, Aja ,washed my hair this morning which was a nice start to the day. The amount of medicine, bloodwork, insulin, and X-rays is unbelievable. It’s a bit overwhelming at times but would not trade it for the alternative. My doctors are extremely happy with my progress thus far. Brian and the girls have been so supportive and loving during this difficult time. I am getting a little bit stronger each day, walking more, and working on my breathing exercises to open up my new lungs. Unfortunately, I have not been able to drink thin liquids or a cold glass of water since April 1st. Hopefully tomorrow I pass my swallow study and can revert to my regular over-hydration habits. Through all of this my family and friends have been so supportive, people I don’t even know have been praying for me and my hero donor, the cars, flowers, pajama sets, meals, a text message  phone call, all of this has helped get through the most difficult times ...

Ups and Downs

 Queen’s Log. Stardate entry April 8, 2025 I’m sure you are aware but if you ever want to get some sleep, don’t check yourself into a Johns Hopkins Inn. To be honest, it was a difficult two days as Deirdre struggled a bit with her breathing mostly due to the discomfort caused by her chest tubes and still needing to discharge the residual fluids from surgery. I nearly fell over when a member of the JH Varsity team told us Deirdre was 41.6 lbs. heavier after surgery. This was due to the amount of fluids they pumped into her during the procedure. You guys can google the rest since I failed my double lung transplant class in 11th grade. Early in the morning, Deirdre’s wheezing became considerable and she was sent for an X-ray revealing fluid at the bottom of her lungs. Not ideal but not unusual considering her condition. She was scheduled for a bronchoscopy later in the day. Exhausted and miserable, Deirdre was still able to put in another lap around the ward surpassing an older chap a...

I’m walking here!

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Queen’s Log. Stardate entry April 5, 2025. Three days post op and Deirdre is on her feet moving at warp speed. Now displaying an unusual and noticeable Brooklyn, NY accent (for real!), Deirdre notes her “beautiful red heads” and begins her first trek down 5W. This is truly amazing since Deirdre did not have any sleep the night before and has not been allowed to eat since April 1. Queen’s Log. Stardate entry April 6, 2025. We said goodbye and heartfelt thanks to the amazing ICU staff in 5W!  They are a dedicated  team of true professionals and we were blessed to be in their care. Now in the Progressive Care Unit, Deirdre will begin her recovery journey that will include rehab and continued monitoring and medicine treatment. She’s in a pleasingly “quaint room” with a nice view, the way she likes it. And there is FOOD!

Just breathe

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The shift change rotation kicked in again on April 4 at 8AM when I relieved Caitlin from her midnight post assignment. Caitlin also received high praise from Mom as she was quite attentive to Deirdre’s needs throughout the night while I was reminded that I apparently slept through the night during my previous push assignment.  Deirdre was now able to resort to writing on a pad and the list of orders and requests were coming in fast. Communicating her pain points and overall needs was incredibly helpful for everyone and the medical team stayed on point. However, and this is the truth, she was primarily focused on making sure that we called anyone and everyone she could think of. We told her we were doing our best which of course was not up to her social standard. Thus her first assisted post on Facebook occurred less than 48 hours after her surgery.  The medical priority was to get beyond intubation. This was our strong desire as well since it was obvious Deirdre was miserable....

“The patient is doing well.” (Part 2 of 2)

As the sedation wore off and Deirdre became more alert and attentive, she became emotional as she began to realize the reality that she once again awoke to the start a new day. It was a day of tugging and pulling with cords, hoses, meds, and machine noises that fill up a room. Deirdre’s discomfort was often unsettling for us all but we were always buoyed by her pronounced progress and strength.  Later in the afternoon, Deirdre began to better understand her surroundings and overall situation and began to communicate with us by writing letters on our palms. When we would get the word wrong or ask her to start over, she would tense and give you that look that only some of us, mostly me, are used to. Deirdre was definitely back. During a rare quiet moment, Deirdre motioned me to her bed and communicated on my palm that she could hear me talk to her when I visited her ICU room immediately following surgery. I am so glad that I used that moment to say what I said. The medical team spent...