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Because you asked for it…

28 Jan

Today is the day Jody has been dreaming of for the last four months!  Why, you ask?  I’ll tell you… if you keep reading.  Many of you have noticed that I’ve taken a break from blogging and I’ve been increasingly questioned about this.  I’m touched that so many of you enjoy reading my posts and take interest in knowing how Jody is progressing in his transplant journey.  In this post I’ll do my best to give you an update on how things are going, but I warn you, it’s likely to be a long one.

Since transplant Jody has needed a daily intravenous (IV) infusion of a powerful anti-viral medication (Ganciclovir).  In the hospital this drug had special connectors on it to prevent the nurses from touching the medication.  At home the drug came packaged in about three layers of bags, we were given gloves to wear when handling it, and gowns to wear (I guess) when administering it, as well as a special box to dispose of it.  Jody needed to take this drug because he tested negative for CMV (Cytomegalovirus), and his donor tested positive.  We had been warned pre-transplant that this is a common occurrence as many of us have been infected, unknowingly, with the CM virus.  To help you better understand, here’s a brief explanation of the virus from the Mayo Clinic:

“Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don’t know they have CMV because it rarely causes symptoms. However, if you’re pregnant or have a weakened immune system, CMV is cause for concern.

Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you’re healthy.”

Anti-viral medication, handled like a chemo drug.

Anti-viral medication, handled like a chemo drug.

It amazes me that so many CFer’s test negative for this virus because it seems they so easily catch everything else. Regardless, because Jody was so immunocompromised fresh out of transplant and his team did not want him to get the CM virus, he had to take this IV infusion for three months, stopping mid-December.  At that point he converted to a pill form which won’t necessarily prevent him from getting it like the IV did.  It is likely that he will contract this virus at some point in time, as most people do, so he is tested routinely for the virus so it can be caught and treated early if and when he does get it.  Jody is no longer on IV’s but he does still have his Hickman catheter in his chest which he flushes daily to maintain patency.

Christmas '14In December our family enjoyed a simple and quiet Christmas at home, just the four of us.  One thing that was missing this year was a 30 foot oxygen line, getting stepped on and yanked beneath the presents and wrapping paper. It’s absence was welcomed.

Hello 2015!In January we celebrated the arrival of the new year with hope that it will be one of healing and change; healing from the last three years of our lives and change as our lives become (ideally) a little less dictated by disease and sickness.  For two years, and especially this past year, we have felt held back and it’s great to feel those reins being loosened.

Jody is now four months post double-lung transplant and since my last post he has continued to improve.  He is still participating in pulmonary rehab three days a week, and his lung function is still climbing.  It’s incredible, and crazy and wonderful!  I wouldn’t doubt Jody will soon hit 100% lung function!  His breathing has never been better!

Jody’s anti-rejection medications come with many side effects and we are still working to manage them.  His blood pressure, which had been high for months following transplant, and was unchanged by an anti-hypertensive drug, is now much lower after the addition of a second blood pressure medication.  The steroid he is on is being tapered down toward the maintain dose he will take for life.  Each time his dose is lowered his blood sugar levels improve.  It is possible that he will be one of those few people who will not be (medication induced) diabetic for life.  We hope that once he reaches his maintenance dose of Prednisone he will be able to stop checking his blood sugar and injecting himself with insulin.  How great would that be?!

Jody seems to be very sensitive to his Tacrolimus, one of the anti-rejection drugs.  His desired blood Tarco level is between 12-14.  This is the range where the drug is most therapeutic for him.  His levels seem to be jumping all over the place, going low at 11 or high at 16.  His dose keeps changing and we have yet to find the perfect fit that keeps him steadily in his desired range.  It’s odd that even on the same dose his numbers fluctuate so much.  This drug is hard on the kidneys and Jody’s kidney function is definitely showing signs of impact from it (and other) medication, especially when his Tacro levels are elevated.  This is a little worrisome to me, a once nephrology nurse, especially knowing that it’s not uncommon for lung transplant patients to eventually need a kidney transplant as well.  Jody’s kidneys have taken a beating through years of potent antibiotics, toxic levels of drugs, and other necessary medications, known to be taxing on these hard-working organs.  Obviously we pray healing and protection over Jody’s kidneys.

Guys Cabin Weekend '15Overall things are going really well.  Jody is breathing independently and enjoying life… cautiously… after all, it is still cold & flu season.  This month he even got to enjoy a fun ‘guys’ weekend away with some friends, something that would have been near impossible a few short months ago.  His new lungs are AWESOME and we remember with gratitude, the person/family who gave them to him.

As I mentioned in the beginning, today is the day Jody has talked about for the past four months.  Today is the day he got his feeding tube taken out!!!  He has hated that thing since the day it went in.  It was put in out of necessity, he hadn’t been allowed to eat for over a week.  Actually, he probably only ate a week and a half out of the five weeks he was in the hospital.  I’m glad for the nutrition this tube provided him during that time, but since coming home, and being given the okay to eat, the tube hasn’t been used (with the exception of daily flushing to clear the tube).  At discharge Jody weighed 100 lbs, today he is 124.  Thank you to the many of you who brought us delicious meals, you played a part in this much needed weight gain.

You might be wondering why Jody’s feeding tube has stayed in this long if it hasn’t been used for the last three months.  Steroids impair healing and because Jody was on such a high dose, his feeding tube hole might not have closed had they taken it out three months ago.  Picture him taking a drink and it immediately coming out his stomach (we’ve seen videos of this).  Each month the doctors have lowered his steroid dose and he is finally at a level where they feel his tube can be pulled without complications.  This is great news because the tube has caused Jody great discomfort.  It is now gone, leaving Jody with yet another scar, proof of all he’s endured on this journey.

Jody’s has now been approved for monthly clinic visits.  It’s so great to be spending less time at Hopkins.  Sometimes he still has appointments there for other reasons, like today, but it’s great to have his transplant appointments less frequently.  For the past year (or more) we’ve been going to Hopkins at least monthly, often even more frequently then that, so I can hardly imagine what it will be like when Jody’s appointments become even more spaced out.  To put Cystic Fibrosis and transplant on the back burner of our lives again seems dreamy.

I warned you this might be a long post.  I’ll end by asking for your continued prayers for protection over Jody during this tough cold and flu season.  Ironically the girls and I have gotten colds (we have them now) but we’ve managed to keep them from Jody (so far).  Our family has avoided the stomach bug and flu that has been spreading like wildfire.  We’ve been warned about how any of these might impact Jody, and would prefer to avoid them (and another hospitalization) altogether.

Thanks again for reading and for your continued care and concern for Jody.  On Saturday he will be celebrating his 43rd birthday… out of the hospital, breathing great and healthy.  One couldn’t ask for much more than that!

The Significance of a Trash Can

20 Dec

Three months!  That’s how long Jody has had his new lungs.  In some ways it seems like it was just yesterday when we received that much-anticipated phone call, and in other ways it feels like a lifetime ago.  Who knew ones life could change so drastically in such a short period of time?

This past week I began reflecting on some of this and am only now realizing just how sick Jody was before his transplant.  Infections, hospitalizations, shortness of breath, oxygen tanks, doctors appointments, limitations; they were our norm.  I had forgotten what it was like to live a life not dictated by disease.  I grieved the lives we once lived before CF took over, but at the same time, the longer we lived that new life the more I became comfortable with it and it felt like normal (even though I knew it wasn’t).  I’m only now realizing just how much I subconsciously worried about Jody during this period. People living with Cystic Fibrosis take their final breath each and every day, often not making it to the point of transplant.  I’m SO grateful to the team of people who took care of Jody during these years of decline.  I’m thankful for the way they valued his life and cared about him as well as for the wisdom they displayed in knowing the right time to start the transplant process (even though at the time it was a scary and overwhelming option).  Thank you, Lord, for placing these people in our lives.

Over these last two years Jody has had to give up many responsibilities around the house as simple things, such as going up the stairs, became work in and of itself.  Jody was not happy to give up a lot of these things, nor was I always (or ever) happy to have these responsibilities added to my ever-increasing work load.  I can think of multiple times this past winter when after working a 12 hour shift I came home to our large driveway, full of snow, and knew I would be responsible to remove it.  This was the last thing I wanted to do after a long and tiring day.  I felt grumpy and irritated with the situation and missed Jody being able to help out with these things.  He, on the other hand, felt grumpy and irritated that he had to watch me (from inside the house) having ‘fun’ on our riding mower, snow blower attached, as I cleared the driveway (although I wouldn’t have called it ‘fun’).

Things like taking out the trash each week, filling the gas tanks in our vehicles, mowing the lawn, grocery shopping, running errands, laying our girls down for naps, or checking on them when they needed something or were being naughty (because those things required going up stairs), are just a few of the things Jody gave up.  I share this with you because three weeks ago I came home from work one afternoon (on trash night) and before I even pulled into our driveway I immediately noticed the trash cans sitting there, ready and waiting for pick-up the next morning.  It was a simple task with huge implications, and I was struck by it.  Jody is getting his life back!  The weight I have carried for so long is slowly but surely being lifted.  I am getting my helper back!

Despite the fact that things are going really well, I’m finding that it’s hard to give up something which had become so engrained in me.  It’s odd not to rush Jody to the car when we go outside in the cold, to let him go check on the girls upstairs, to send him out to pick something up at the store.  I have carried so much guilt for not being able to do enough and for making Jody do things that he probably shouldn’t have been doing, like taking care of our girls while I worked.  Any time my work phone rang and displayed a home number I found myself holding my breath and almost afraid to answer, fearing something was wrong (because sometimes it was).  Jody has never been a complainer but I knew his job as stay-at-home-dad (forced on him by disease progression) was not easy.  How could it be with 22% lung function?

It’s wonderful to share with you how much two new lungs have changed our lives.  Jody has more energy than I have seen in years.  I can leave for work in the morning without guilt because I know that he is more than capable of caring for our children while I am gone.  When I come home I hear stories of all the fun things they did that day and I smile and think to myself how thankful I am for organ donation.

There is so much more I could share with you in this post about how our lives are changing (and it’s only been three months).  I don’t feel like I’ve done a very good job of expressing the change in mindset CF and transplant have played in our lives.  It’s hard to put into words the way I feel in my head and heart but hopefully you have somewhat of an understanding of this.  Just as it took time to adjust to the ‘loss’ of life as Jody’s CF progressed, so too will it take time to adjust to this rebirth of life (although I think this will be less of an adjustment since we’re gaining rather than giving up).  While I believe Jody will beat the odds of transplant I feel cautious to jump in with wholehearted belief that this positive change in our lives is here to stay.  Having given up so much in the name of disease it somehow seems easier if I keep myself prepared for the worst.  I don’t know if you could call this being guarded or just being realistic?  Conversations like we had this week in clinic about hospitalizations and viruses, especially those which can cause a rapid, drastic decrease in lung function do not make it easier for me to believe this new life is here to stay.  Regardless, the changes I am seeing in Jody right now are amazing!

Now for a brief medical update.  Last Friday (12/12) Jody had a routine three-month bronchoscopy done.  He was put to sleep for this procedure so a scope could be inserted through his mouth and into his lungs.  They were then ‘washed’ and checked for rejection and infection.  I am glad to report that he has neither of those!  Additionally, the damage that was displayed after Jody’s aspiration in the hospital has been resolved. One more good thing to share… Jody’s lung function this week hit 91.4% (and that’s after the bronch when doctors expect to see a temporary decrease in function)!  He wanted to hit 90% by Christmas and he did.  We praise God for all these good reports and are cautiously optimistic that they will continue.

I’ll end with a photo collage of a family outing we recently took to Dutch Winter Wonderland, a local amusement park for kids.  These tickets were gifted to us and would not have been possible if it weren’t for Jody’s new lungs.  It has been a long time since we did something like this and we look forward to many more of these outing where precious, lasting, memories can be made.

Family Fun @ Dutch Winter Wonderland.

Surviving

8 Dec

Christmas tree shopping

I can hardly believe we’re entering the second week in December.  I think I’m going to blink and realize that Christmas has come and gone.  Last week we went out and bought a real tree (which we had approved by the transplant team).  Pre-transplant, the cold weather was very bothersome for Jody.  As soon as he breathed that cold air into his failing lungs it caused his chest to tighten and elicited lots of intense coughing.  So much so that sometimes it even caused bleeding in his lungs.  Last winter I dreaded every time he stepped outside.  Few things scared me like the site of him coughing up bright red blood, standing helpless, waiting and wondering if and when it would stop.  People with CF have died from this alone; it can be very serious.  I used to tell Jody to wrap a scarf around his mouth and nose, I’d tell him to go straight to his seat (I’d buckle the girls into their car seats), and sometimes we’d even use his handicapped sign to park close to an entrance so he had less exposure to that cold air.  Often he needed to do an Albuterol nebulizer treatment after being outside to help open up his airways, relieving some of the chest tightness.  There are so many things we take for granted in life, like being able to go outside and breathe comfortably and effortlessly.  This winter is going to be different.  While I’m scared of the fact that it’s cold and flu season (and I’ve been warned that Jody could be admitted 10 times this year for various bugs and infections), I feel such peace knowing that he can walk out the door and breathe well.  No longer do I fear him coughing, no longer do I dread the site of blood spilling from his mouth.  It’s odd to not hear his cough anymore… but it’s wonderful too!  All that to say, aside from being cold, our hunt for the perfect Christmas tree went well; no oxygen, no shortness of breath, no coughing, no blood, and one perfectly green, perfectly fragrant six-foot Fraser fur.

Jody continues to make great progress, and his PFT’s are still climbing.  Last week at clinic he was up to 85.4% lung function.  Oddly, just two weeks after being lectured for driving and told that he wouldn’t be allowed to drive for six months, he was given the okay to drive again.  We don’t pretend to understand what changed their minds, nor do we question the decision since Jody feels ready and it will make our lives easier to have two drivers in the family again.

I have been back to work for about 2-3 weeks now and it has not been easy.  People ask me all the time how Jody is doing, and I appreciate that, he’s been through a lot and deserves to know that people care about him.  Unfortunately, that’s normally where the conversation ends.  Very few people ever think to ask how I am doing, really doing.  These past three months (nearly) have been anything but stress-free.  We’re finding that Jody has very little memory of his five weeks spent in the hospital which, for him, is probably for the best.  I on the other hand have full recollection of it all, including things that I have chosen not to share on my blog.  I’ve had very little time to process all of this as I have lived on survival mode.  The weight of ‘single’ parenting, care giving, working to provide for my family, housekeeping, chauffeuring, arranging babysitters and doctors appointment after appointment are heavy upon my shoulders.  Nearly every day off work is spent at some kind of appointment.  I have adjusted my work schedule when I can, working all kinds of shifts to lessen the need for sitters, at the expense of sleep.  Work in and of itself has been stressful lately with census surges and less than ideal staffing.  Jody and I have had very little quality time together since transplant and I’ve spent little time with friends and doing the things I enjoy.  All of this has taken its toll on me.  This entire experience, including the two years leading up to transplant, has certainly changed me.  I’m overjoyed with how well Jody is doing with his new lungs and words can’t describe how thankful I am for this gift, but just as it’s been hard on him it’s been hard on me too.  I’m dreaming of a relaxing vacation, just he and I, where the ocean is clear, the sand is white, and his scar is faded.  It will be a long time until this dream comes to fruition but I trust that one day it will, after all, isn’t that the point of this transplant, to enjoy life, to make dreams come true?  We may not be reaping the full benefits of Jody’s new lungs yet, but I know we will.  I know that my stress level will decrease, and one day (hopefully soon), life will be ‘normal’ again.  Until then, I continue to put one foot in front of the other and press-on.  Just like Jody, I’m a survivor!

Years Restored

22 Nov

Jody is doing well.  Really well.  On November 15th he reached the two month mark, and I have to say, his new lungs are downright awesome!  Each week at clinic his lung function continues to climb.  This past week he was at 81.5%!  I can hardly wrap my brain around this considering a few short months ago he was down to 22%.  Can you imagine what that must feel like?  Recently I looked at my records of Jody’s PFT’s from when we started dating 10 years ago (yes, admittingly I do have 10 years of records in my file cabinet).  In 2004 his lung function was hanging around 75%.  Through the next ten years he experienced a slow and steady decline until his lungs nearly gave up here in 2014.  One night in surgery erased 10 years of damage.  It’s crazy!

Pulmonary rehab is going well and Jody is definitely becoming more active.  In fact, this past week in clinic he was reminded not to overdo it because he has a very thin wire holding his chest together right now.  Jody has a transverse sternotomy incision which means they cut his breastbone in half horizontally instead of up and down.  This provides greater access for a lung transplant surgeon than the traditional (vertical) sternotomy.  I searched online to find a photo of this to give you a visual and this is the best one I could find (sorry it’s a little blurry).  On x-ray you can see the bow tie-like wires holding Jody’s sternum together until it heals.  Until that time he continues to have lifting and stretching restrictions.

Speaking of restrictions… two weeks ago his transplant coordinator gave us the impression that he could start driving when he felt up to it, and recently he did.  After two months of me, and only me, at the wheel it was great to have him back at it… he could drive himself to rehab.  At clinic this week he was given a lecture about having started driving and told that he wouldn’t be cleared to drive until six months out of surgery.  The coordinator (who seems to call the shots) did correct the doctor and say that it wouldn’t be that long.  It was frustrating to be given this gentle scolding when just two weeks ago Jody was told that he would know when he felt ready to get behind the wheel.  Perhaps they should have clarified that just because he felt ready didn’t mean he was ready.  So now we’re back to me and only me behind the wheel.  This is complicated because I am back to work, Jody has rehab three days a week and our youngest daughter needs to get to and from preschool three days a week.  Jody’s clearance to drive couldn’t come soon enough.

One thing Jody’s new lungs allowed us to do recently was to celebrate our youngest daughter’s fourth birthday.  We didn’t do anything fancy, just the four of us here at home, DSC_0308Ain fact, I didn’t even make a cake, I bought one (gasp).  Most of you know that one of my favorite things to do is make/decorate fun birthday cakes for our girls but this birthday I decided I didn’t need the added stress.  Piper, forgive me, I promise I’ll make it up to you next year.  The cake I asked the bakers to make turned out cute and she probably didn’t even care that it wasn’t made by me.  Do you remember this post, ‘Thank you, transplant, for waiting two more days?‘  I guess I could have titled this one, ‘Thank you, transplant, for this day.’  I’m so glad our daughter didn’t have to celebrate her birthday without us.  The hope of this transplant is that Jody will thrive, beating the statistics of lung transplants just as he beat the odds stacked against him so many years ago when he was diagnosed with Cystic Fibrosis.  Hopefully he will be around to celebrate many more birthdays.

One final note, our family received some sad news this week that Jody’s Mom, Sharon, was diagnosed with colon cancer.  She has an appointment with a surgeon in two weeks and until then we are left with very little information on the staging of her cancer and the treatment plan.  We know she will have surgery on December 10th and we appreciate your prayers for that.  Thankfully I am off work that day so I can be there for her surgery.  Pray that God would fill her with hope and minimize the negative thoughts that come with every cancer diagnosis.

Thanks for continuing to follow Jody’s Journey.

‘For I will restore you to health and heal your wounds,’ declares the Lord…

Jeremiah 30:17

Two Down, Ten to Go

9 Nov

All things considered, Jody had a good week.  He’s eating well (many thanks to the people bringing delicious meals), he gained a pound, and he was even a little more active at home. On Monday he had a local speech therapy session where they taught him additional exercises to strengthen his swallowing muscles.  It seemed kind of pointless because he had already been practicing the strategies he learned while in the hospital and on Wednesday he completely and totally passed his sixth swallowing study.  He no longer needs to use his adult ‘sippy’ cup, he can drink without fluid restrictions, and he can eat foods of mixed consistency (like cereal with milk, or soup).  At this point he is still taking his pills with Jell-O or pudding, but he’s been cleared to take them with water, just one at a time.  Jody was very excited to have passed this test.  I’m glad too but feel a little cautious after everything we’ve been through.

At clinic on Wednesday Jody’s PFT’s were 73%!!!  One week ago they were 64% and the week before that they were 50%.  It’s mind-blowing!  This past year watching Jody’s PFT’s had become something I dreaded, they were so disheartening, and a little too much reality that his lungs were failing.  Now, with two healthy lungs which are getting used to their new home, his PFT’s are not so depressing.  In fact, they’re actually uplifting.  Watching those numbers climb is confirmation that transplant was worth it. We hoped for this.  We prayed for this.  It hasn’t been easy, but we thank God for this gift.  There is a reason people refer to organ donation as ‘the gift of life’… because it is… truly.  I may not speak of it often, but we have not for one day forgotten Jody’s donor and his/her family.

Also at clinic this week Jody lost his metal!  If you’re not following me, I’m talking about his staples… all 67 of them.  After seven weeks his incision had healed well enough and the staples were ready to be removed.  It was simple and painless, and now he has one less (or 67 less) things on his body that don’t belong there.  The day he gets his feeding tube and central venous catheter out will be another day to rejoice.

Because Jody was not on enough medication (enter sarcastic tone), he was started on five new meds this week.  The most notable one is a medication to lower his blood pressure, which has been elevated as a result of his immunosuppressants.  To help with his high blood sugars we’ve started giving him four extra units of insulin on top of the sliding scale at breakfast, lunch, and dinner.  Remember that unlike ‘normal’ diabetics he doesn’t need to limit his sugar intake (because of his Cystic Fibrosis).  For now this increased insulin seems to be working.  Jody was not diabetic before transplant and it is still possible that once his Prednisone dose is tapered down (currently he is on 17.5 mg), his sugars might improve.  However, this could also throw him into full-blown diabetes.  Time will tell.  Obviously our hope is that he will not be diabetic for life.

As you may have noticed, there are so many side effects to the medication Jody is required to take.  I just mentioned high blood pressure and high blood sugar, but it doesn’t stop there.  The Tacrolimus causes his hands to shake noticeably.  Our oldest daughter has asked more than once, “Daddy, why are your hands shaking so much?”  These shakes even render his handwriting illegible.  We are told that with time his body should adjust to this medication and the shakes may be less.  Jody still has blurred vision (although not nearly as bad as in the hospital), and this past week we noticed his speech was off.  When we mentioned the speech thing at clinic the team didn’t seem to have an answer for it or to be concerned by it.  Anyone who knows Jody can pick-up on it pretty quickly.  It’s hard to know what could be causing it if it’s not a known side effect of his medications.  I guess we’ll just keep an eye on it and pray that it resolves with time.

Friday Jody started his first pulmonary rehab session.  This is done locally and actually he was doing this at the same center pre-transplant.  Then it was to preserve the lung function he had, now it’s to improve it and get him back into shape.  Pulmonary rehab is basically guided exercise.  Jody is very deconditioned right now so he is looking forward to rehab and the strength it will give him.

There are plenty of moments when Jody or myself are frustrated that things are not moving along as fast as we would like them to (even though we know he has come a long way).  Usually this happens when he would like to be doing more or when I wish he could do more.  I was thinking about this the other day and realized that because we have been talking about a double lung transplant for so long, it’s become the norm to us and has lost the wow factor.  Don’t get me wrong, it’s still huge and we know it, but sometimes we forget just how huge it is.  It’s not until I tell a complete stranger and watch their eyes grow large, and hear, “Oh, wow!” spill from their lips.  It’s not until I hear the lead anesthesiologist who was in the OR with Jody (1 of 4 who were there) say that a double lung transplant is the hardest thing for an anesthesiologist to perform, “By far harder than a heart transplant.”  It’s not until I hear from a transplant coordinator that a lung transplant requires higher doses of immunosuppressants than any other transplant performed today.  And this week, it was when the transplant doctor said that it takes ONE year to fully recover from this surgery that I was once again struck by the magnitude of it.  We have been told this before by other lung transplant recipients but this time it really hit home.  In this day and age people have major surgery, go home a few days later (if not the same day), and are back to work a few weeks after that.  When I hear that it takes ONE year to recover from this three and a half hour surgery, I become that wide-eyed person, appreciating the greatness of it and I too utter, “Wow!”  When we remember this, we embrace the progress Jody has made already and know not to rush his recovery.  A year sounds like a long way off when our lives have already been on hold for a year, but what’s another year when he has the rest of his life to live after that?  Sometimes I feel that people think that since Jody is home all is well and that transplant is done.  As you can see, the surgery is complete but this is far from over.  Two months down, ten months to go…

First Post-Transplant Clinic

31 Oct

Wednesday we traveled back to Hopkins for Jody’s first post-transplant visit in the Transplant Clinic.  For now this will be a weekly occurrence with the goal to gradually increase the space between appointments.  As I mentioned in my last post Jody’s first week at home was a rather miserable one as he dealt with painful abdominal cramps and bloating which made eating difficult.  These symptoms were the result of a bowel obstruction.  There were so many possible causes for this: Narcotics, dehydration (for so much of his hospitalization he was on severe fluid restrictions, both oral and IV), too many CF enzymes (since he has lost so much weight-now down to 105 lbs, his enzyme requirements are less), and CFer’s in general are prone to obstructions (although it’s never been an issue with Jody in the past).  There are other possible causes as well.  At this point we didn’t care so much about the cause as we did getting it fixed.  For two nights Jody did GoLytely, a type of bowel prep that is often used prior to a colonoscopy to clean out a persons system, so to speak.  When this failed to work we knew he needed something more invasive.  A barium enema was added as first on our list of things to do on Wednesday.  This basically includes filling the colon with a special liquid (barium) so that it becomes visible on x-ray.  A blockage can then be identified and hopefully broken up.  Jody was definitely obstructed but thankfully the procedure worked to fix it.  Immediately after the procedure we went to eat lunch and he ate more than he had all week and the best part was that he didn’t have that painful cramping in his abdomen as a result.  He’s been eating and pooping ever since, and it’s great to see him feeling better.  Hopefully this (obstruction) won’t be an ongoing issue that he has to deal with going forward.

The rest of our day long but was rather uneventful.  Jody had a chest x-ray and then his first post-transplant hopsital PFT’s (pulmonary function testing).  He now has a machine at home to check these twice a day and we were anxious to see how the home machine correlates with the hospital machine.  The numbers were surprisingly close.  His lung function this day was 64%!!!  When we left the hospital a week prior he was at 50%.  This number is expected to continue climbing and we’re told usually peaks between 6-12 months post transplant.  I still can’t believe how easy Jody makes this testing look compared to a few short weeks ago.  Even the tech who performed the test commented on how neat it was to see him walking in there, no oxygen, and able to do the test so effortlessly.  Can you imagine how ‘easy’ it will be for him as his lung function increases?  I’m so in love with these new lungs of his!

Post-transplant PFT

In clinic we met with Jody’s transplant coordinator and the doctor.  Jody’s primary transplant doctor also happens to be a CF doctor (one of the few who works both CF & transplant) so it’s been neat to see him through the years as one of Jody’s primary CF docs and now his primary transplant doc.  At his appointment we reviewed his extensive medication list and made some changes.  We reviewed all the home self-monitoring data we’ve been recording (vital signs, weight, PFT’s).  They checked out his incision and all the healing sites where tubes and lines were removed.  Dr. M listened to his lungs, smiled and said, “You’re lungs sound SO good!”  Those words seem so foreign after years and years of unclear lung sounds.  It’s music to our ears.  Jody’s x-ray did show that he still has inflammation and fluid in his lungs (we knew this when we left the hospital) so hopefully this will resolve on its own.

Jody’s been having a hard time sleeping at night because he needs to stay at a 30% angle.  He has pillows propping him up so that his shoulders stay upright but it makes it hard to change positions at night.  It’s also hard for him because he is not normally a back sleeper.  He wakes up with back and neck aches.  Some nights he even sleeps half of the night in bed and the other half on the couch.  I never quite know where he’s going to be when I wake up.  Jody talked to the doctor about this in clinic but they hold firm to the fact that he needs to sleep upright to prevent another aspiration episode (even though he doesn’t eat for over three hours before bed).  I’m going to order Jody a wedge pillow I found online to see if that helps.  Jody has thought about buying a recliner chair but that doesn’t seem like a reasonable long-term solution; we’re too young to sleep in separate chairs beds.  If this is a lifelong thing we may need to break-down at some point and order one of those mattresses that sits up.  For now I hope the wedge pillow will work, obviously that’s the easiest and cheapest solution.

The last two days have been much better than all the previous days at home.  It’s been great to see Jody eating again and not paying for it afterwards.  Speaking of food, many of you have asked how you can help, and here is one way you can bless us.  Our friend Kendra has kindly set up an online meal schedule for us.  Meals are so wonderful, especially for me, so I don’t have to worry about cooking in addition to taking care of Jody and our girls.  When I go back to work I know they will be even more helpful.  If you are interested in bringing us a meal you can CLICK HERE to sign-up online.  Thank you to those of you who have already signed-up or brought a meal, you don’t realize how helpful this is to us, and we are so very grateful.

 

Updates from Home

26 Oct

Jody has been home from the hospital for five days now and we are settling into a new routine.  I have three weeks off work and while I’m thankful for that, it doesn’t seem like nearly enough.  I remember the transplant coordinator at the hospital telling me to be sure I was rested and ready for discharge because it would be “all you (me) at home” taking care of Jody.  I am surprised at how much time post-transplant caregiving takes (that and being Mommy).  Twice a day Jody has a number of self-monitoring tasks he needs to do and record, such as weight, vital signs, lung function testing, etc.  DSC_0346AHe has an extensive medication regimen that begins at 8am and concludes at 10pm (see photo on right of all his oral medications).  He also has a number of intravenous (IV) and inhaled medications.  It is so weird to me that his entire medication list is new (as in, he no longer needs most of the CF meds he’s been on for as long as I’ve known him). It feels like everything I’ve learned in the past 10 years about Cystic Fibrosis is thrown out the window and now I’m learning an entire new beast called ‘lung transplant.’

At discharge we sat down with a pharmacist and Jody’s transplant coordinator to review his meds and fill his first pill box.  We were given an eight page chart full of medications to guide us with what to take and when to take it.  This first week I gave Jody a ‘free pass’ and I took responsibility for giving him all of his meds at the appropriate time.  Next week we will do it together and the third week he will do it by himself while I watch.

I learned a few things this past week, one being that the pill box provided by the hospital was not working (at least for me).  There were not enough slots in a day to accommodate the numerous times he needs to take meds.  For instance, all morning meds were lumped into one slot even though they are taken at different times throughout the morning.  After an unsuccessful Google search for a six-slot per day (or more) pill organizer, I decided to get creative and make my own.  I bought two seven-day pill boxes with four slots for each day.  I flipped the boxes on their side to make the seven-days become seven-slots (per day).  DSC_0376Now I can label the specific time Jody needs to take his meds and I even have an extra section for PRN (as needed) drugs or Jody’s digestive enzymes.  I realize that pill boxes are not exciting reading material so please know the only reason I share this with you is because there are a number of pre and post transplant readers of my blog who might find this method helpful for them as well.

In addition to medications, Jody also needs to check his blood sugar four times a day and often requires insulin coverage (he will most likely develop full-blown diabetes as a side effect of some of the medication he is taking for his lungs).  One thing that is odd about this is that because of his Cystic Fibrosis, which still affects his GI system, he doesn’t need to limit his sugar/carbohydrate intake.  As a result, he can eat things most diabetics would need to avoid, although it does cause his blood glucose levels to rise significantly.  It’s hard for me to understand this balance or lack thereof.

On the day of discharge Jody had swallowing study #5 done.  If you remember, the week before he was given permission to eat again, but wasn’t allowed to drink thin liquids.  At this test they did clear him to drink regular liquids but he must tuck his chin down to his chest to swallow.  He is still experiencing laryngeal penetration where the liquids go down into the larynx and are stopped by the vocal cords from entering into the lungs.  He was given a special cup to use for liquids because it only allows him to take in 10 mL of fluid per sip.  I lovingly refer to this cup as his ‘adult sippy cup’ because that’s just how it looks.  This cup prevents him from taking in large volumes which would most likely make their way past the vocal cords at some point.  After everything we’ve been through another aspiration episode is the last thing we need.  Jody also can’t eat foods that are mixed with liquids such as cereal or soup, like vegetable.  Additionally, to prevent aspiration he needs to sleep at a 30 degree or more angle. Propping pillows and not being able to change positions at night has been difficult and uncomfortable for Jody. He is waking up with back pain as a result. We’ve heard mixed talk about the follow-up plan regarding his swallowing issues.  He might need speech therapy to give him exercises to strengthen his swallowing muscles or they might just wait and repeat another swallowing test (yes, #6!) after he’s been eating on his own (which could in itself fix the problem).  For right now Jody is really glad to be able to drink again, even if it is just 10cc’s at a time.

At this time Jody is not allowed to be left alone.  Because he is immunosuppressed, and we are in cold and flu season, we continue to be careful about germs and exposing him to outside people.  It’s hard to know when and how to let up on this.  As far as I am concerned, for the first time in five weeks I am mask-free!  This is both liberating and terrifying at the same time.  I often wonder if I will ever kiss him without fear of killing him by spreading some bug I may not know I have.  I realize everything is quite fresh right now and that I will probably relax about it in due time, but for now the fear of germs and bugs is still very real.

I wish I could say we’ve been living it up here at home and having the time of our lives, but it simply wouldn’t be true.  While the routine is going fine, Jody has not been feeling well.  He has spent much of the week sleeping and is having a lot of intermittent yet intense abdominal pain.  Eating makes the cramping and bloated feeling worse, not eating is causing him to lose weight that he shouldn’t be losing.  It’s hard to encourage him to eat, knowing the pain it will cause him, yet its hard to see the skin hanging off his body knowing it will only get worse if he doesn’t eat.  It wouldn’t surprise me if they start using his feeding tube again for extra nutrition but Jody is strongly against this.

Bowel obstruction could be the cause of all the abdominal pain Jody is experiencing.  Today the doctors called in a prescription for him to do a colonoscopy-type bowel prep that should clean out his system completely.  Tonight he is feeling a little better but he also hasn’t eaten so it’s hard to say if the clean-out worked or if its his empty stomach that has him feeling a little better.  This has been an ongoing issue for Jody and it is very frustrating and overwhelming for him.  He has had moments where he sincerely wondered if all of this (transplant) was even worth it.  I know that deep down he knows it was, and that he will get better, but we (you and I) can’t belittle how hard this major surgery was on him (and anyone else going through it).  It’s so much easier for me to say, “Of course it was worth it!!!” because I’m not the one experiencing it first hand.  For this reason I chose to stay quiet, but it didn’t keep me from shouting those words in my head.  I know that in his heart Jody knows transplant was worth it; he’s got a wife and two little girls to live for and to watch grow into young ladies.

Speaking of little ladies.  On Tuesday our family of four will finally be back together.  Our youngest daughter had a recent live vaccine so she wasn’t allowed to be in the same house as Jody for a two-week period afterwards.  It turned out to be a smooth transition to home only having the oldest with us because she is in school for eight hours a day, and is also a little more independent.  I’m excited to have everyone at home under one roof, but I’m not gonna lie, I’m a little nervous about it too.  Please pray that God would give me an extra dose of patience and that things would go smoothly.

We will be heading back to Hopkins for transplant clinic on Wednesday.  This will be a weekly thing for the time being but the visits will gradually be spaced further apart.  Hopefully by this weeks appointment Jody will feel better and won’t need to stay; that possibility is never very far off.  Please continue to pray for Jody’s ongoing recovery and especially for the GI issues he’s been having.  Your words of encouragement do wonders for the soul.  It is so touching to know that people (still) care and so I hope you will take the time to continue uplifting Jody with your words/comments.  Until next time… thank you for reading.

Big News

21 Oct

I realize it’s been over a week since I last posted about Jody and I apologize.  My laptop battery charger stopped working so the battery died leaving me unable to blog.  I left the hospital Sunday for work so I picked up a new charger and am now back in business.  I just read over the last post I wrote about Jody so I can update you from that point.

Jody’s breathing is doing great!  On chest x-ray his lungs are still recovering from the infection that hit them so hard but clinically he is feeling good from a breathing stand-point.  He has been off all oxygen (with and without activity) for over a week.  Actually, sometime this past week they even took him off the continuous O2 monitoring.

On Saturday they delivered the PFT machine that Jody will use twice a day at home to measure his lung function.  Prior to surgery Jody’s lowest lung function (recorded) was 22%.  From the time we started dating, nearly 10.5 years ago, I have gone with Jody to his doctors appointments and watched him perform these pulmonary function tests.  About three months before surgery I stopped watching; it was getting too hard. He would take a deep breath, blow out the air as fast and as hard as he could, giving it his all, and the results would be so disappointing.  His face would turn as red as can be, the veins in his neck bulged, and the coughing it brought on was torturous to hear.  His inability to do something so natural…breathe well, was heartbreaking.  I couldn’t sit there and watch it anymore.  So, for the first time in 10 years, I began staying in the waiting room until the test was complete.  By the time I saw him he was recovered and I could pretend he never had the struggle.  On Saturday when Jody tried out his home PFT machine, his lung function was 50%!  This number is expected to climb through pulmonary rehab and as his lungs recover from his infection.  Even better than the 50% is that the test seemed effortless.  His face didn’t turn red, his veins didn’t bulge as before, and instead of five minutes of intense coughing, he didn’t cough at all.  It was an emotional time for the both of us as we realized once again the implications of this gift of life he’s been given.

Since I last posted, Jody’s main issues have been GI related.  After having his feeding tube revised he started complaining of abdominal cramps, bloating, and nausea.  At first it was blown-off by the staff but as it grew in intensity they started to take him more serious, ordering an abdominal x-ray and CT scan.  When Jody had his ‘J’ tube revised the doctor told me that he didn’t know how the tube had moved in the first place, and noted, “It should never move (into his stomach) again… and if it does… I’ll eat my shoes.”  Well guess what, he needs to eat those shoes of his.  Just two days after Jody’s revision (and possibly sooner, we can’t know) the tube was back up in his stomach and this time, all coiled up.  They planned to revise it again but Jody was persistent that he wanted it out.  Because nutrition has been an issue (he’s down to 109 lbs), they decided to leave it as is and do a calorie count over the weekend to see if Jody is eating enough on his own to sustain him.  I should also mention that in addition to the feeding tube issue, the CT scan showed that Jody had a bowel obstruction which was probably the cause of his GI symptoms.  Over the next few days they gave Jody treatments to help with this issue, but it never seemed to work well.  While the doctors didn’t feel the misplaced and coiled ‘J’ tube had anything to do with Jody’s GI issues, we didn’t agree.  It seemed he only started having problems after his tube was revised.  Finally on Sunday, they pulled his ‘J’ tube out at this bedside.  He said he could feel it uncoiling as it was being pulled.  It was a relief to him to have it out and since then he has tolerated food without the painful cramps, bloating and nausea.  I’m sure the team would deny any correlation, but it seems more than just a coincidence.  Now we need to pray that his appetite will return so that he can start putting on weight.

There is so much more I could tell you about what’s been happening over the last week.  Since I’m a little behind in updating you I can’t expect to get through everything in this one post.  The best, most notable and surprising news I have to share with you right now is that Jody came home tonight!!!  His long recovery will continue here at home.  He’s still very weak and frail, and easily fatigued.  There is so much for us to learn and adjust to as well as an unbelievable amount of medications to figure out.  Hours upon hours of education have come down to this.  We ask you to pray that the transition from hospital to home will be smooth.  I look forward to telling you more about this when I get the chance.  We are stunned that transplant has come and gone, and after five weeks Jody is finally home!  We appreciate your continued support and encouragement as this journey is far from over.  More to come… I promise.  Now check out the surprise ‘going home’ shirt I gave to Jody, I think it’s my new favorite; no truer words have ever been spoken.

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Welcome Home Jody!

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Special ‘going-home’ shirt

One Month Lungiversary

13 Oct

I think a new, updated blog post is in order, how about you?  Jody was transferred out of the ICU Thursday night (Oct. 9th) as we anticipated.  He is back on the cardiovascular progressive care unit, where he was before, and it feels like coming home.  How we missed this place and the nurses, during his week in the ICU.

From a breathing stand-point Jody continues to improve.  Since his transfer he has been off oxygen at rest and his O2 sats have improved, ranging 95-98%.  His shortness of breath with activity is much improved as well.  He is able to walk to the bathroom now without much difficulty.  Last week, even just moving in bed or sitting on the side of the bed elicited shortness of breath like I’ve never seen.  One time in the ICU I saw his O2 sat drop as low as 55% (with good waveform for my fellow nurses), and they consistently dropped into the 60’s with activity.  Yesterday, while walking in the hallway, he still looked and felt short of breath but nothing like the week before.  His oxygen saturation only dropped into the 80’s.  It seems the change in antibiotics are doing the trick to knock this bug out of him, and we’re so glad.  Even his chest x-ray is showing signs of this improvement.

While breathing is much improved, this infection certainly took its toll on Jody.  I am amazed at how much strength can be lost, even for a ‘healthy’ young man, after just one week of inactivity.  It seems Jody has lost a lot of muscle tone and conditioning.  Walking is harder than it’s ever been.  On Saturday he walked about 150 feet and could go no further.  On Sunday he walked one lap around the nursing unit (400 feet), taking three breaks to complete it.  He looks quite wobbly on his feet.  He will need to work with physical therapy to gain back that which was lost.

As you know, Jody has been NPO (nothing by mouth) since Thursday, October 2nd.  Actually, he has only eaten six days of the four weeks he has been here.  He has been getting nourishment through his feeding tube for some of this time, but the effectiveness of it is unknown.  Literally, this feeding is going right through him, even waking him up six or more times a night to use the bathroom.  The doctors adjusted his enzymes to help his body better absorb the nutrients, and eventually switched him to a different formula, which did help a little.

On Saturday Jody started to complain of feeling bloated.  They hooked his feeding tube up to suction and it appeared the tube feeding was being suctioned out of his stomach.  If you remember from a previous post, Jody has two parts to his feeding tube.  The meds, and only meds, go into his stomach, and the feeding goes below his stomach into his small intestine.  There should be no feeding in his stomach because the doctors don’t want it refluxing up into his lungs.  This is why it was odd that when hooked up to suction, tube feeding appeared to be coming from his stomach.  The NP ordered an abdominal x-ray and sure enough, the “J” portion of his feeding tube, which should be in his jejunum, or small intestine, was instead in his stomach.  Tube feedings were stopped all together and Jody will need to have this repaired under endoscopy tomorrow.  Last night they restarted him on IV nutrition (which is said to be less effective, but something nonetheless).  With everything going on in the last four weeks, and only six days of real food, Jody has lost about 20 lbs.  This morning he weighed in at 113 lbs!

CourageThis was a difficult weekend for Jody.  He felt exhausted, tired of all of this, and just plain down in the dumps.  At one point he looked at himself in the mirror, seeing the effects of his 20 pound weight loss (which he didn’t have to lose in the first place), and had a break-down.  He missed our girls, he wanted to eat, he wanted to feel better and strong again, and he wanted to be home.  Truly I can’t imagine what it’s like to be in his shoes.  I see the weight loss, I see how de-conditioned he is, I want him to be home again too, but I kept that to myself and listened and encouraged him.  Now that his breathing is improved I believe those other things will follow suit.  He’s breathing well (for the most part), something he hasn’t done for over a year, so what’s it matter if he’s skin and bones for a short period of time?  Pretty soon he’ll start putting weight on, exercising, and he’ll have his strength back.  “Look out Arnold (Schwarzenegger),” he says!

I am so happy to tell you that Jody’s hallucinations, constant crazy talk in his sleep, and tremors are gone!  His vision is also much improved!  It has been one week since the doctors took him off the Voriconazole, and they told us it could take 5-6 days for it to leave his system and the symptoms to go away.  He was doing and saying some crazy things so it’s wonderful to have him in his right mind again.  I hated talking to him like he was a child, and him thinking I was making things up.  I’m so glad to have Jody be Jody again.  I believe he is now getting better rest since his mind is relaxed (and the fact that he’s not running to the bathroom all night anymore either).

DSC_01367AYesterday afternoon our girls came for a visit.  One of the NP’s in the ICU actually suggested it as a way to boost Jody’s spirits.  It had been four weeks since they saw each other.  Jody choked up when they first walked in, watched them a little and then went to sleep.  He mostly slept through the visit, but it was good for them to see him and know where he is at and that he is okay.  Naturally, we took a family picture before we said our goodbyes.

This morning Jody woke up looking better than he has in a while.  We had been looking forward to this day as the day he would undergo his fourth swallowing test and possibly be allowed to eat again.  He left for the test this morning around 10 am.  Since aspiration might have played a role in what caused Jody’s lung infection, they tested him more extensively DSC_0211Bthis time.  Thank goodness he passed!!!  I knew it would not be good for him (in more ways than one) if he failed, but thankfully he didn’t.  Dr. Shah is allowing him a regular diet but he will need honey-thickened liquids (liquids made to the consistency of honey).  Like the muscles throughout his body, his swallowing muscles are also weakened.  After a few days of eating again this should improve.  He will most likely need one more swallowing eval before they will let him drink un-thickened liquid.  This will mark Cine (swallowing test) #5!  He’s going to be a pro at these by the time he leaves here.  Those of you who know Jody well know that he’s a big iced tea drinker.  I’m wondering what he’s going to think of drinking iced tea with the consistency of honey?  Perhaps he’ll be so happy to eat that the thickened liquids won’t bother him.

It seems things are looking up.  Please pray that no new damage is done when Jody starts eating again (I’m feeling a little paranoid about this considering all we’ve been through), and that progress and healing continue.  We are so ready for the sweet life that these new lungs can and will bring us.

Happy ONE month ‘lungiversary!’

Prayers Answered

8 Oct

Taking a break from a walk for a quick selfie

Praise God we are finally seeing some progress again!  Jody’s biopsy on Tuesday showed unspecific diffuse alveolar damage (basically lung injury), but no rejection!  We were happy to hear this news.  In the last two days Jody has made huge progress, particularly in his breathing.  I’m quite shocked at the difference of a few days.  Today he was on 0-1 liters of oxygen at rest, and tolerated that well, keeping his O2 sats 88 or above.  He does still need the increased oxygen concentration for walking (50%), but even with that his sats are not dropping nearly as much as they were previously in the week.  I can’t tell you how great it is to see this change.  It was miserable watching him so, so short of breath.  There were about two days this past week when Jody felt like giving up.  Thanks to the prayers of many, calls from friends to encourage him (even at one o’clock in the morning when he needed it), his inner strength, love for his little girls, and ultimately, The Lord, he was able to pull through.  His transplant recovery is far from over, and we’ve learned that things can change very quickly, but we are celebrating his turn-around.  Today when he was out walking in the hall it seemed like all the staff in this busy ICU stopped to smile and comment on his progress.  Their cheering was genuine and it encouraged Jody to strut his stuff all the more.  They’ll be calling him ‘speed walker’ again in no time.

Now that we know the issues Jody has been having are not the result of rejection, there are mixed opinions on the actual cause of this set-back.  Theory #1 is aspiration.  Jody drinks a 16 oz. weight gaining shake before bed, he’s done this for as long as I have known him.  When he was granted permission to start eating again he began drinking his shakes just before bed as usual.  After that he laid down flat (or near to it), and went to sleep.  None of us (myself or the nurses) gave it much thought.  The thought behind this theory is that his shakes refluxed up his esophagus and back down into his lungs without him ever knowing it happened.  This is why they call it silent aspiration and is the result of the damage done to his nerves during surgery.  Aspiration then leads to infection.  Infection wrecked havoc on Jody’s new lungs.

Theory #2 is that Jody’s downfall was solely the result of infection (no aspiration whatsoever).  The reason some doctors hold this opinion is because of the damage done to both of his lungs.  If aspiration was the root cause, some say the damage would have been primarily in his right lung instead of both.  CFer’s (people with Cystic Fibrosis), especially in end stage, harbor bacteria in their lungs chronically.  When that bacteria flares up they typically feel sick and need to be hospitalized, as Jody has been many times in the last few years.  It could be that some of the old bacteria got into his lungs during the surgery itself (although I believe they do a cavity washing to prevent this).  Another possible source of transmission could be from Jody’s sinuses which might harbor some of the bacteria of his old CF lungs.  Of course it could also be something he picked up elsewhere which is easy to do when so immunocompromised.

Whatever caused the infection that wrecked Jody’s new lungs, we’ll never know.  At this point the important thing to focus on is that they’re getting better.  His chest x-ray is looking better when compared to a week ago, and his breathing is much improved as well.  He’s still not back to where he was before this bug hit him but that will come, slowly but surely.  It’s possible that Jody might even be transferred out of the ICU tomorrow, which we’re really excited about.

We’re so glad to see Jody’s lungs improving but he still has some other bothersome issues that we’re waiting to see improve as well; twitches and hallucinations.  The doctors are looking into medications to help with these effects.  Yesterday they did finally take him off Voriconazole, the med they felt was causing the above issues (switched him to something else), and said it might take 4-5 days for this med to clear his system completely.  I hope they are right because I know it frustrates Jody to not always know the difference between what is reality and what is not.  I feel bad that he is experiencing this but I’ve had plenty of inward laughs about some of the things he’s been saying.  Just now, as I type he was picking at his pulse ox probe and talking about the “red mat cardboard that’s underneath it.”  Next came the milk he was “drinking upside down.”  It seems he never gets a break from the visions in his head.  It must be horrible to feel like you’re going crazy but I know that he will laugh at this one day when I tell him stories of things he said and did.  One final note about the above medication change is that since the Vori was stopped yesterday Jody reported his vision was slightly improved today.  Hopefully this will only get better and better as the drug leaves his body.

The lack of food and drink is also starting to wear on Jody.  It might be another week before they allow him to have another swallowing evaluation.  Pray that he can make it that long on ice chips alone.

Progress is being made at last.  Here’s to hoping it continues, and we take more steps forward than back.

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