Happy Labor Day

Traditionally, Memorial Day marks the beginning of summer & Labor Day marks the end. It’s hard to wrap my head around the fact that it was just Memorial Day when Andrew’s health began to decline. And in one season- our lives have changed forever…

Here’s an update on the Rigid Bronchs:
Andrew will be receiving them weekly until his surgical team is satisfied that the build up in his airways is under control. Once the blood begins to flow systematically, the tissue will become more healthy and the airways will stop narrowing. Until that time, he will have to head to the operating room on Fridays for them to go in and manually clean them out. Please keep sending positive vibes for a speedy blood vessel and airway recovery!

In other news- he has officially graduated from Physical Therapy! His therapists feel confident that he can now exercise and train on his own! He’ll still be getting speech therapy to work with his aphasia, but he’s a free (ish) man in the gym! Woo!!

On an unrelated note: we’d like to ask that you all keep Andrew’s co-worker, and her family, in your thoughts and prayers. She was diagnosed with Leukemia earlier this year and has recently been moved to Hospice Care. She is a beautiful person with an incredible spirit and we are sending as much positivity and light to her as she sent to Andrew just a few months ago.

Xoxo,
Amber

A Bronch by any other name…

Today marks 2 months since Andrew’s transplant. (Happy 2 Month Lungiversary!) By total coincidence, he had an exploratory bronchoscopy today at Clinic due to some slight wheezing he was experiencing last week. During a bronchoscopy, the doctors go into the lungs with a scope and sort of snoop around to see how things are looking. Often they will extract a small piece of lung tissue to biopsy for an even more detailed analysis.

I guess by now we should be accustomed to the rockiness that is this recovery process, but I think we still have hope every time a procedure rolls around. Which, I guess, is a good thing to have as opposed to living life waiting for the next complication, right? Remind me of that if you ever see me resorting to the latter…

Well, today they found that the deadening scar tissue where the new lungs are connected to his bronchial & pulmonary arteries is not coming out on it’s own and creating a build up of mucus and miscellaneous secretions. The end result is that his airways are narrowing. So, we’ve got another OR visit planned for Friday. This time they’ll do a rigid bronch, like they did when he was still in the hospital, and clean out these secretions, mucus, and dead scar tissue. He’ll have to be fully under anesthesia & he’ll have to be entubated since that’s the easiest way for the surgeons to work with the scope. Luckily for my panic threshold, he’s been through this before and we know what to expect, as do the docs.

In the meantime, they are culturing the bits of secretions that they got today to look for any signs of bacteria or fungus. Since his pulmonary and bronchial arteries are still Cystic Fibrosis-ified, it’s possible. If they find any it will mean getting a couple of weeks of IVs and some inhaled anti-fungal treatments.

I hate the phrase “out of the woods” because that implies that “the woods” is this scary dangerous place where bad things happen. I prefer to think of “the woods” as safe and confined and protected. It’s a much better analogy, in my mind, than feeling exposed and out in the open where anything can happen. I feel like we’ve been “out in the open” for months now and I’m really looking forward to being safe and sheltered, in a sense. His doctors tend to think that this is all just part of the initial recovery phase and that it should all start evening out over the next month or so.

I am hanging on to hope that that is the case and that maybe soon, in the near future, we can have a smooth procedure. Until then, please keep Andrew in your thoughts/prayers/meditations/etc as we go over this next little tiny bump.

Xoxo,
Amber

The kindness of strangers

Andrew’s first week home was full of physical therapy, speech therapy, pharmacy visits, routine training, pill popping, and video games. He’s doing so great at physical therapy and his speech is continuing to improve at such an excellent speed! We’re getting our routine down to a science and even though he’s eating anything that isn’t nailed or glued down, I haven’t had to make another trip to the grocery store… yet!

We had a feast fit for a King with our roomie Jacoby and our friends, Scottish & Hofer. We made our, almost, daily trip to Target. We watched some funny movies and did some excellent spring cleaning! This weekend kind of sucked for our morning walks since it’s been pissing rain. But this evening we decided to think outside the box and go after the sun had gone down a bit and the air was nice and breezy. On our walk we ran into a very nice older woman in our neighborhood with two adorable dogs. We stopped to pet & chat.

Her name is Brenda and her two cute pups were Lucy, a 9 year old shih-poo, and Savannah, a 3 year old King Charles Cavalier. Whenever we walk around, Andrew wears his awesome vogmask and usually has his rollator walker. People will either smile or look away & it doesn’t bother us- he’s protecting himself! But Brenda was different. We chatted about the pups and she told us that she was living there with her daughter and her 1 year old grandson and that they had just moved in around Easter. Of course, Savannah was enthralled with Andrew and gave him all sorts of loving! We told her about our pups and where our house was. But then Brenda cut right to the chase and asked Andrew if he was recovering from something. Andrew doesn’t shy away from questions about what he’s been through so he told her he had received a double lung transplant about a month ago.

Most people say “wow” or “that’s incredible”. Any words of encouragement are always so wonderful to hear. But that wasn’t good enough for our new friend. Her response: “I am so proud of you!” She asked what caused the transplant and he told her it was from Cystic Fibrosis. Then she asked if we would be alright with her adding us to her prayer list. What a wonderful spirit! We told her that of course she could, we would be grateful! We exchanged some more niceties but before we continued on the latter part of our half mile walk, she told us that if we need anything at all, food or company or anything, to leave a note on the garage and they’d be happy to help!

Sometimes it’s easy to get wrapped up in everything you have going on and forget that there’s a world outside of your own, but then someone you have never met before comes along and makes you realize that there are people everywhere who care and want to share their generosity. Humankind is such a powerful being!

“Be kind. For everyone you meet is fighting a hard battle.” -Plato

Xo,
Amber

Weekend at Andrew’s

I would sum up Andrew’s first weekend back at home as spectacular with a dash of surreal and a side of comforting. And not just because I got to wake up next to my best friend again, but because the transition has been fairly smooth. Sure we’re still trying to iron out our routine and get used to doing some new things, along with getting used to not having to do some old things. But, all-in-all, I’d call it a success.

Saturday we took a quick trip to Dick’s Sporting Goods to pick up Andrew some new kicks for his rehab then got some Jersey Mike’s on the way home- Andrew’s choice. He’s gotta get used to having it Mike’s Way with no veggies, but still yummy! Then we watched some TV and had dinner and cupcakes with The (newlywed) Coburns! Sunday we enjoyed listening to the rain while watching some movies. Nice and relaxing.

Some of the new things we are adjusting to are checking Andrew’s blood sugar regularly and administering insulin when needed. Some of Andrew’s new meds have lots of sugar in them and can affect his glucose levels. We are also adjusting to early morning routines and making hearty breakfasts. Sometimes that means eggs, bacon, sausage, and French Toast made by Chef Jacoby. Sometimes that means TWO bowls of Cinnamon Toast Crunch instead of one. We also have to do vitals twice a day including blood pressure, temperature, weight, O2 sats, & pulse rate, which have all been good.

With all the new things we are getting used to, I’d have to say that my new favorite thing is going on our morning walk. When the neighborhood is quiet & peaceful, and the air is fresh & clean. We just stroll along the path I marked out (a 1/2 mile total) and chat about different things. It is hands down the best part of my day! Spending a productive, yet relaxing, bit of the morning with my Man.

Today was Andrew’s first day of rehab. He started with a Physical Therapy assessment which went great! (They were actually really proud of the aforementioned morning walks.) Andrew was such a baller in his new shoes & keeping his oxygen levels crazy high while he did the workouts. They noted that the main things he’ll need to work on are balance & weight training. They even think he’ll be able to be off of his walker before too long! And he’s schedule for 3 sessions/week for 4 weeks! Pretty cool! After Physical Therapy was Speech Therapy and he did great in there, too. He’s already so much farther along than he was a few weeks ago! He’ll be doing that twice a week for 5 weeks. They even sent us home with a list of games to play as “homework”. One of which is Phase 10!!! Can I get a Hell Yea?!

Wednesday he has his first transplant clinic appointment since he was discharged and we’ll get to see what kind of healing progress he’s making at home. Thank you all again for your words of encouragement and motivation! They mean so much to us:)

Xoxo,
Amber