Hey, Friends!
It’s been a while since my last update and so much has been going on! Since we are working with COTA in honor of Andrew, I’ll be updating on our Donation Page moving forward. Please make sure you check us out over there and follow along!
Here’s the link: http://cotaforandrewh.com/blog
XOXO
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
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
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
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
HE’S HOME!!!!
That’s right- after a couple of weeks of no updates and waiting for Medicaid, we found some other assistance programs and got our fundraising website started and Andrew got to come home. We’re going to miss all the friends we made at the hospital- especially the team in the CTSU. But we promised to visit as they all cheered and yelled “Byyyye” when we left. And now it’s time for the fun to begin…
We came home with two bags of medicines and supplies including all the things to take his vital signs, check his blood sugar, and change some dressings. He has seriously stepped up his pill game from the pre-transplant meds but his inhaled treatments have been dramatically reduced. He starts his pulmonary rehab and speech therapy next Monday and will have his one week post-discharge clinic check up next week, also!
Tomorrow we start his routine of a fresh morning walk after a hearty breakfast and he gets to take it easy and re-acclimate all weekend long! Visitors are welcome in intervals, as not to be overwhelming, but there’s one stipulation: you must bring a casserole/baked good! 🙂
It’s so nice to be writing this in bed with my husband laying next to me watching Friends! It’s surreal after two months of sleeping apart and communicating sporadically through texts or Instagram! It’s time for the next chapter of our lives- it’s time for Post-Transplant!
Xoxo, Amber
It’s been a whole month since Andrew’s lung transplant! Can you believe it?? So much has happened in a month, and so much has happened since my last update!
Andrew is eating whatever he wants now, he’s down to only one chest tube (although that should come out today), he’s taking all of his pills orally, and walking/talking so much better! Yesterday he walked a 1/2 a mile! We just need to put some meat on his bones and bring him home!
So when can he come home? Well, Andrew has Medicare and, up until a few months ago, had Medicaid. Unfortunately there was a paperwork lapse and he was dropped from Medicaid. Without it, the price of his hoards of transplant meds are astronomical, so we are A) waiting for his Medicaid application to get approved and B) beginning to do some fundraising. I will update with the info for the fundraiser on another day as it is still all getting worked out by our AWESOMELY AMAZING band of fundraising friends!
But for now… We just keep doing what we’re doing and hope that Medicaid approves his application soon so he can come on home!!!
Xoxo,
Amber
I know it’s been a little while since my last update. But it’s been for good reason. We had another complication pop up and I wanted to wait until it was resolved before updating… Which means that it’s been resolved!
What kind of complication you ask? Well, you see, CFers most often have issues with their bowels. Sometimes, the mucus affects their pancreas, which causes malabsorption and lots of pooping. Because of all the pooping, their bowels don’t have time to get any mucus obstructions, which is super common. Other CFers who don’t have the pancreas issues will have common bowel obstruction issues because mucus will build up in the bowels and cause a back up. In Andrew’s case, he’s always had pancreas issues, which means LOTS of pooping!
Unfortunately, because he was asleep so long, his small intestines did have some mucus build up and he wasn’t able to pass anything. The first solution was yet another surgery. They even had him on the Operating Room schedule for last Tuesday AM -after spending yet another weekend in the ICU- but, thankfully, decided the risk was greater than the reward to operate again and cancelled the surgery, hoping that there may be some other tricks to try first.
Luckily- they were right! It took a long time, but as of 4am Sunday morning, he is a pooping man again! This weekend held so much relief for both of us! He got a couple of chest tubes out, he pooped, he’s walking 3-4 times a day (about 1000-2500 ft total), his speech is improving a little bit every day, and he’s CLEAN SHAVEN! No more lung-off beard! But the biggest relief of all? His breathing. It’s perfect. No coughing, no shortness of breath, no labored breathing. These lungs have been a gift worth fighting for and we will continue to fight for them!
What’s next for Andrew’s recovery? He’s really hoping to start eating today or tomorrow, taking his meds orally, getting rid of these last two chest tubes, and get all of his wounds healed up! Plus rehab, rehab, rehab!
We’ll keep you posted as things progress and hopefully be able to update from home soon!
Xo,
Amber
Since Andrew’s speech and motor skills weren’t improving very quickly, they decided to send him down for an MRI yesterday and we got some interesting news last night…
Apparently, during the rapid dip in his blood pressure after surgery, Andrew suffered a minor stroke. Because of the stroke, he now has acute Expressive Aphasia. At first, we were both pretty bummed. He wants to get better and go home so badly, and he feels like he keeps bumping into obstacle after obstacle.
The good news is that he’s already met with a speech pathologist today, and he did a great job. They’ve got a plan for recovery and are VERY encouraged that he will be as close to normal again as possible over the next few months. The other good news is that his lungs are still looking great!
We’ve got a little more work ahead of us, but Andrew is staying motivated and he’s ready to do it!
Xoxo,
Amber
Yesterday evening Andrew got to move up from ICU to the “Step Down” unit! No more glass doors and constant commotion, so hopefully this means he’ll be able to get back on a regular sleep schedule. It’s been super hard for him to get back in the swing of a routine with all the new meds and the fact that he slept for so long. Maybe this will help!
Another good thing: he’s totally off of oxygen now! What a difference for him! He still hasn’t gotten his clarity or speech back, but he is responding well and everyday we’re able to have more lucid conversations! One thing his doctor said is that with the extreme blood loss and drop in blood pressure, his brain lacked the right amount of oxygen for a while. So, hopefully, as he gets more active the blood will continue to flow in the right direction.
For the record, he’s so ready for the following things: Exercise (he asks everyone who comes in if they’ll do exercises with him- he’s gotta work on his walking first though) Food (he was dreaming about food today during a nap because he kept lifting his hand up to his mouth) and a damn Coke (he’s even tried to “persuade” me into sneaking him one)! He hasn’t been allowed to eat or drink yet, his tummy hasn’t woken up fully so it could be dangerous for his bowels, but when he does he’s gonna be the happiest guy in town! And someone better give him a Coke!
More updates to come but keep those good vibes coming his way!! He loves all the encouragement and motivation!!
Xoxo,
Amber
a perspective of another life
Fundraiser with more questions than answers.
Our journey to parenthood through loss, life and adoption
A spirited documentation of my personal style.
Est. 2010
To CF With Love... 