Sunday, February 2, 2014

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 13th 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 17th) 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


Anonymous said...

You two continue to amaze me. I love you guys and cannot wait to see you back home in no time! Much love!!! God is good. <3

Sandy W said...

Happy Valentine's Day Kyle and Stephanie. I read every word you write Steph and I pray very often for Kyle's continued progress. Keep up the great work Kyle...Bravo!!! You both are such an inspiration to me. Honestly, you are my heros. I really mean that. The love and devotion you two share shows through every word you write Steph. You are very precious. Have a wonderful Valentine's Day. Love and many prayers... Sandy Wohlford