The Road Home

I can’t believe how quickly the last few weeks have flown by. We have had many changes and challenges in the last few weeks to keep us on our toes and me away from my blogging duties. I will try to recap our last few weeks of the ICU as Kyle made huge progress.  Kyle was transferred to the 7800, a pulmonary specific floor in the hospital. Unlike the ICU, it had many patients who were chronically ill awaiting transplant, even those who had been hospitalized for over a year waiting for a match. The other half were post transplant patients who were struggling with a few things (i.e rejection, breathing issues, etc.). Despite the older, smaller facade the unit felt home-ier. Our room was small enough that I could elbow Kyle’s bed from the recliner (which served as my make shift bed for a few weeks). I believe they said it was the smallest room that they had on the floor but I couldn’t have cared less as I was happy they were going to get him some much needed sleep on the ventilator. He was on a 5 day no sleep binge, as his body couldn’t support him as he slept. It was the only unit that would allow a ventilator; otherwise you would have to be transported back to the ICU.

We were happy to have a change of scenery, without it being another ICU. This unique unit was overseen by pulmonologists, not surgeons so we were seeing many of the doctors who Kyle saw pre-transplant and during his evaluations. The first week we were surprised to see that Dr. Alice Gray, a doctor who had been involved with Kyle early on and big advocate for him getting listed would be on rounds for the entirety of our first week. It was safe to say Kyle was already feeling better with sleep on the horizon, and a familiar face. Dr. Gray’s goal was to get Kyle stronger, and to wean him off the ventilator and place him on a home bipap unit. As he progressed through the week, he felt much stronger with a full nights sleep (in terms of hospital sleep).  He was walking over 20 laps a day (1.25 miles) and started working with weights at the hospital gym. During that time they continued to ween him off oxygen use, as his saturation levels were stable enough to push his body more. He felt like a new man, and was happy to be progressing.

They continued testing him daily and his first bronchoscopy since the lobectomy came back negative for rejection. But the small lung tissue sample showed he was still fighting an aggressive bacterium called abscesses. They continued to administer heavy antibiotics via IV, breathing treatments and pill therapy to keep the bacteria at bay. This aggressive bacteria requires 6 months of antibiotic treatments, administered by a 24 hour IV.  As unfortunate as the news was we were happy to have the smart infectious disease (ID) team working to keep his lungs stable. During the bronch they also used a balloon to dilate one of his airways, in hopes to help relieve one of his bronch airway of restriction.

Despite a few hiccups he continued to make progress. Kyle continued to ask for the swallow test so he could eat and drink. They eventually decided was ready for the test and he passed with flying colors. So to his delight they had him gradually work his way up from a liquid diet to a soft food diet, with nocturnal tube feedings. I will never forget his first sip of water after almost 2 months he was ecstatic. He was starting to feel human again. I had to capture it on video (as seen below).

Our Last Week in the Hospital

As the week progressed they removed the last chest tube, and downsized his trach from an 8 to a 6. He struggled a bit with the new trach size as it was a huge difference but they said as he continued to downsize things would get easier for him to acclimate to the home bipap and regular breathing.  On January 13^th they mentioned the words discharge. I was a bit thrown back as he had many obstacles ahead of him, and Dr. Zaas’s plans for the week were going to be huge in preparation for home;  bipap at night, downsize trach to a Jackson (all metal trach, size 4 which is corked), room air when walking and sleeping.  The thrach downsize would allow him to speak more normally without strain. Not only was he facing respiratory challenges he was having a very hard time hearing.

Another Obstacle 

When he was diagnosed with Wegener's over 12 years ago he suffered hearing issues due to repercussions of the disease. He had a mastoidectomy to remove a cholesteatoma growing around his eardrum. This was major surgery that left him partially deaf in his left ear. He managed to hear with his right ear, but continued to suffer ear infections in his right ear. Soon after his lung and kidney transplant he complained of hearing issues and they found there was fluid behind his eardrum so they prescribed eardrops to clear up the fluid. After weeks of no progress we pushed to have the ENT’s examine his ear for further trauma. They performed a hearing test, and used a high-powered microscope. They removed some build-up in his ear which exposed he had a hole in his eardrum. By removing the build–up it removed any hearing he had which made him nearly deaf without an amplifying device. They recommended hearing aids for long term but this would take months to order and fit. They also requested he get a head CT to verify he didn’t have another cholesteatoma growing in his ear. After reviewing the results of the scan there was an indication of another cholesteatoma but we are still waiting to hear final results and recommendations from an ear surgeon. Until then Kyle struggles with his immense hearing lose.

Homeward Bound

With our discharge day approaching we had visits by a discharge nurse, insurance coordinators and home healthcare representatives. It was a lot to handle as we were quickly approaching “D-day” and I had much to learn. I would be taking care of his foot wounds, trach cleanings, breathing treatments, tube feedings, 24hr IV administrations, clinic schedules, rehab visits, vital signs and pill administrations. I felt our discharge was rushed because not everything was arranged prior to Friday (January 17^th) our “scheduled” leave day. Despite Duke’s amazing team of people I felt a bit overwhelmed by the chaotic, and disorganized discharge checklist. Due to some last minute procedures we were discharged at 5:00pm that Friday. We were scheduled to have a home healthcare nurse visit to give me an orientation on IV administration at 6:00 so we were cutting it close. Not to mention all of his meds (which were in a large shopping bag) needed to be organized and administered. After gathering 2 months of belongings and wheeling Kyle to the parking garage we on our way home. I hadn’t had time to enjoy the moment as I felt the pressure of the timeline. Our friend Sara was kind enough to run some errands for us and grab groceries so we didn’t come home to an empty fridge. She was such a lifesaver, we were so grateful for her help. Despite the rough timeline we got home in time to be greeted by Sara and our medication delivery. One small problem, the nurse showed up 2 hours late, so we didn’t get to bed till the wee hours of the morning. My brain was fried. After a long night we had to wake up early to get him to an evaluation at the Pulmonary Rehab Center. Sadly, things didn’t calm down the rest of the weekend.

Finding Our Groove

Just a few of Kyle's supplies taking over the pantry.

After some trial and error with the new machinery and organizing 5 large boxes of supplies we started to find our groove. It was nice to see Kyle at rehab, reunited with others who had received their transplants during the time he had been in the ICU. He did a few one-on-one rehab sessions to acclimate him, but soon enough he was back with the rest of the group. The physical therapists wasted no time getting him back into the heat of things, 20 min walk, 20 min bike, 30 min floor class, weights, and stretching. I was in awe of what they had him doing, and how strong mentally he was to push through. I could tell he was in the mindset of the harder I work, the quicker I go home. He’s truly amazing. I am happy the only pain he is enduring is that of sore muscles from him long 3 hour daily workouts. The small physical tasks he can complete on his own are really starting to add up. He walked into the kitchen the other day to get himself some water and I was so weirded out, and then I realized why. I hadn’t seen him in the kitchen more than 3 times since we have lived in NC because he was too fatigued to do much on his own. These are the small victories I revel in and keep me hopeful for a life of normalcy.

Weekly Maintenance 

He has clinic visits once a week for a chest x-ray, pulmonary function test, lab draws and doctors visits. Since we have been home his labs and x-rays have proven to be stable and some are showing small improvements. They are hoping to remove his trach next week after his bronchoscopy. He will also have a stomach emptying test and acid reflux test in the coming weeks to decide if he can push forward to eating normal foods with little restrictions. We continue to pray for these little victories and accomplishments, as this is getting him that much closer to getting us home. We are so thankful for the family visits (Miss Tina) and the sweet cards and gifts. I wish I had time to thank you all personally for the gifts and sweet cards but just know Kyle and I are forever grateful for the love we have been shown. Your continued support is pushing us that much closer to the finish line. 

Much Love,

Stephanie & Kyle

Holidays in the Hospital

This years Christmas was different than most. We didn't attend holiday parties or go Christmas shopping or decorate our home, we spent it in the cozy accommodations of the Duke ICU. As much as we love this time of year and all the celebrations we couldn't help but be eternally grateful for this gift Kyle was given. Despite the hardships this transplant has brought us and the mental fatigue we have endured we continue to reflect on the amazing family who honored us with the organs of their loved one. This miracle comes with an immense amount of emotions. I can't put into words how this unselfish gift has given Kyle and I an opportunity at a new and healthier life together. As Kyle and I walk the halls of the ICU, we see countless families touched by organ donation. We have become close with many families as they attended the pre-transplant lectures, and endured countless physical therapy sessions together. I have seen the blood sweat and tears of each organ donor recipient, and they all are working hard to make the most of their precious new gift.

Our card display from our wonderful friends and family.

As I said, this journey has not only effected us but our families and friends at home. We were lucky to share the holidays with both of our families as they traveled to North Carolina. Each of our families made the best of the situation and brought the Christmas cheer to us. Despite the missing Christmas tree and stockings it felt like Christmas with our family near. Not to mention the beautiful Christmas cards, and letters they brought with them. All signed with well wishes from our friends/family, neighbors and community. Every act of kindness we have been shown warms my heart. I hope that we can someday give back and return the love we have been shown. I often reflect on how lucky we are and wonder what we have done to be surrounded by such wonderful people.

The day before Christmas eve Kyle's doctor told us the team had decided to remove the lower left lobe of his lung. A biopsy done the previous day had showed the lobe wasn't taking to the hyperbaric treatments and continued to look dead and necrotic. Of course my first thought was, "Merry Christmas to us," but after realizing the possible issues the necrotic lobe could present I knew they had his best interest at heart. Removing the lobe as soon as possible was the best option. Thankfully my family had gotten in earlier then expected so they could see him the night before the procedure. 

Fresh out of the operating room, Kyle was not nearly as out of it as he was for his previous procedures. He was awake and able to talk to us. Before the procedure we both had a bit of anxiety because his last procedures were filled with complications. Gratefully, this surgery only lasted 3 hours and it went as smoothly as they had hoped. They supplied him with an epidural so he wouldn't experience as much pain coughing or moving. The biggest thing for lung transplants is just that, moving and coughing, they don't want them hindered by pain. Before you know it he was back making laps around the ICU only a day or so later. 

Kyle and I on Christmas day.

Once the lobe was removed I could see past the pain, and temporary stiffness to see he was making progress. We started walking more and more, and he stayed off the ventilator for over 48 hours making him eligible to go to Stepdown if all else aligned. Although 48 hours was their standard they kept Kyle an additional day to keep an eye on his CO2 levels (and nothing much happens on the weekends).  I tried to contain my excitement as I had been let down before. I really thought Kyle had looked the best he had ever looked off the ventilator and he was even able to sleep a little here and there. 

Upon entering the Stepdown unit on the 7th floor  ( just a walkway across from the ICU) it felt like a completely new place. Although the layout was identical there wasn't as many filled rooms, or bells and whistles sounding. Another perk of Stepdown was he wasn't attached to as many cords and wires and all his chest tubes had been removed. Seeing him attached to less just made him look less fragile, as he was able to move and boost himself in the bed. This new change felt great, and I was happy they would let me take him on walks whenever I wanted without being accompanied by a nurse. This made reaching 20 laps around the unit all that much easier to accomplish. I even started doing his sacrum, and foot dressings daily.

As soon as we thought things had lightened up they took him down for a chest x-ray only to find out he had a fluid pocket in the area where they had removed the lower lobe. It is pretty normal to have build-up of fluid in areas that have been removed but they were slightly concerned with how quickly it had progressed so they tried to schedule a guided chest tube placement. This would allow them to use an x-ray to find the fluid in his body and place the tube to drain the fluid. The only issue was it was New Years eve and they had no availability to complete the procedure. So we had to wait, which was hard to hear because I knew it was causing Kyle to have more labored breathing. 

A day or so later they let us know that the biopsy (where a small sample of his lower left lobe was removed) done prior to his lobectomy was showing signs of bacteria growth. They didn't know if it was isolated to only the lower lobe, the area they just removed, or if it had progressed to the upper area. To take precaution they started him on some breathing treatments and heavy antibiotics to contain the issue. Sadly, the combination of antibiotics, him needing to get the fluid removed from below his lung and not being able to sleep made for a hard few days. Eventually they were able to schedule him to have a chest tube placed which helped make his oxygen saturations go up, but the higher saturations were accompanied by pain of yet another chest tube. Not to mention its placement was awkwardly situated on his back. During those last few days his CO2 levels were trending down which gave the doctors an idea to downsize his trach as long as his CO2 didn't exceed 65. Of course we were happy to hear this as it is much easier to speak with the valve with a smaller trach. The following day his Co2 was 70 so they decided against the procedure. 

Despite this news I knew it would be for the better as he was still having issues sleeping. He was only getting about 2-3 hours a day which was causing his energy level to drop. They couldn't really put their finger on the reason for the lack of sleep. They tried every sleep aid they could (that wouldn't suppress his respiratory) and even worked with stress management for sleeping and calming techniques. His body just didn't seem to trust itself to sleep. The minute he would fall asleep he would snap back awake, occasionally de-stating and then his numbers would climb back up after he awoke. As of today they decided to have him try vent therapy at night so he could regain his strength and then eventually try a bipap machine to see if he has success sleeping. We are awaiting a new room on another floor that isn't ICU but chronic pulmonary related. There he will receive vent treatments without bouncing back to the ICU seeing as his ventilator needs are not immediate or critical. He continues to fight his mental fatigue as he pushes through the ups and downs of his journey. 

The decision to donate has not only effected Kyle and myself but all those who love Kyle. Our lives will never be the same and we will forever cherish this hard but beautiful time. We are continually grateful for the prayers and love. We pray he continues to gain strength and is able to sleep on his own soon without issues.

Thank you, and happy holidays!

Kyle & Stephanie