Tag Archives: lung infection

Infection… but no rejection

26 Mar
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Pre-bronch selfie

Since I last wrote, Jody had his six-month post-transplant bronchoscopy.  In case you forget, this is a procedure where he is put to sleep so they can introduce a scope, via his mouth/throat, into the lungs.  His lungs are examined and “washed” with saline.  Tissue samples are taken to check for rejection.  It normally takes about two days until we get the results of this test back.

Like his three-month bronch, this one showed no rejection!  Praise the Lord for that!  It did however show that he is growing a bacteria called Pseudomonas Aeruginosa.  This came as a surprise (to us)… sort of.

Pseudomonas is a bacteria that Jody harbored in his old, CF lungs.  Once he got it, it never went away.  That’s sort of the thing about Cystic Fibrosis.  They have thick, sticky mucous in their lungs and once bacteria gets in there it finds a home in the mucous and is hard, sometimes impossible, to eradicate completely.  This bacteria is typically controlled with inhaled and oral antibiotics, however, when it flairs up (becomes more numerous), one experiences symptoms and is said to have a lung infection, or a CF exacerbation.  Normally this calls for IV antibiotics to again lower the number of bacteria.  Those of you who have been following Jody’s journey before transplant know that he has spent his fair share of time in and out of the hospital fighting these frequent lung infections.  In the past it became clear when Jody had an infection because breathing became a little more labored (as his lung function decreased), cough and mucous production increased, and Jody became much more tired.  Those were his classic signs that it was time for another hospitalization and IV antibiotics.

We had been warned that it’s not uncommon for some of those old CF bacterias to make their way into the new lungs.  It could have been sitting in his trachea (or elsewhere) when the new lungs were placed, and eventually made its way down into the lungs.  Actually, we found out that a very small amount of this bacteria showed up on his three-month bronch (which they didn’t tell us at the time), but that it was too small to treat.  Now, three months later, it’s grown to a quantity worth treating.  We were surprised to hear of this infection because Jody feels great; breathing is good, he has no cough, no mucous, and no drop in energy.  He has none of the “classic” signs of an infection that we’ve grown so familiar with identifying.  I guess that’s the beauty of new lungs.

In case you’re wondering, this does not mean Jody’s CF has returned.  Thankfully, this cannot happen.  Jody will never again have Cystic Fibrosis in his lungs.  This means that he no longer has that thick, sticky mucous which bacteria love so much.  He should be able to get rid of the infection completely (yeah!).  He is treating with oral and inhaled (nebulized) antibiotics for three weeks; no IV’s, no hospitalization!

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Post-anesthesia and breathing well

Here is a picture of Jody after the bronchoscopy, still a little drowsy from the anesthesia.  I share this photo because even though he’s in and out of sleep, you can see on the monitor, if you click on the photo (middle number in blue) that his oxygen saturation is at 99% on room air (no oxygen).  Seeing that never gets old!

Aside from the infection, the latest issue we are dealing with is the possibility of Jody haven broken the internal wire holding his sternum (chest) together.  Over the last week or two he’s been noticing pain in the center of his chest, that feels shallow, like somethings rubbing.  In certain positions he moves he can hear a “popping” sound.  These signs point to a fractured internal wire.  Next week we have an appointment for a CT scan of his chest which will tell us if our speculation is correct.

Like us, your next question might be, how will they fix that?  Honestly, we’re not really sure.  When Jody asked his transplant coordinator this question, her response was, “I don’t want to tell you because I don’t want to give you anxiety.”  This response produces almost more anxiety because it sounds like the fix for broken wires is pretty ugly.  Of course, I imagine the worst; having his transplant incision opened to remove or replace the wires, needing chest tubes, needing the thoracic epidural again, pain issues, etc..  Most likely it won’t be that bad,  but it would have been nice for the coordinator to give us a better answer.  Who knows, maybe the wires are perfectly intact and there’s another reason for the pain.  As always, I’ll keep you updated as we learn more.  We appreciate your prayers about the infection and the possible broken wires.

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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!’

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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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What is it?

6 Oct

Jody is still hanging out in the ICU and not much has changed since my last post.  Breathing continues to be a struggle and is the top concern of the doctors.  As anticipated by the infectious disease doctors the bacteria in Jody’s lungs has been identified as a resistant strain of Stenotrophomonas.  By resistant I mean that this bacteria is hard to treat because many of the available antibiotics do not knock it out.  The good news is that because this is the bacteria we were expecting to find, he was switched days ago to antibiotics they feel will actually treat it.  Unfortunately, Jody’s immune system is completely shot (to prevent his body from attacking his new lungs), so fighting this infection may not be an easy thing.

Now for some bad news, he’s not getting better.  It seems Dr. Shah isn’t so sure aspiration and/or infection are the complete cause anymore.  If it were either of those, one would expect to have started seeing small improvements by now, and we have not.  Today they are going to do a biopsy of his lungs to check for rejection.  Dr. Shah doesn’t seem convinced that this is what’s going on either.  We are then left with the burning question…what is it?  No one really knows what it is that’s got Jody’s new lungs so beat up.  We desperately need an answer so the doctors can figure out how to fix it.  The results of the biopsy will take a few days to come back so we won’t know until then if rejection is the issue.

After 21 days, the thorn in Jody’s flesh, his left chest tube, will most likely be removed today (after the biopsy).  For so long we talked about the celebration we would have when that final tube was pulled, and I’m kind of sad that Jody is a little too sick and a little too delirious to join me in the celebration.  He certainly will not miss the pain this tube causes, his shorts getting drenched from it leaking, or the skin tears from the bandages which cover the insertion site.  Jody’s tube is still draining a decent amount of fluid but there is a theory that the presence of a chest tube in the body may actually produce more fluid.  They hope once the final chest tube is gone his body will stop making so much fluid and will absorb that which is left.  I hope they are right and that he won’t need a tube to be re-inserted.

I’ve been working on this post in between interruptions all morning.  One positive change to report is that I got the approval for Jody to have one ice chip per hour instead of every two or three hours.  He can have 24 big, fat ice chips a day!  The doctor also approved him for hard candy.  If he can stay awake long enough to eat it, I think this will be helpful.  I also got an order for Jody to get some medication at night to help with his hallucinations so he will hopefully be able to get better sleep.  At this point it would be too detrimental to his lungs to stop the medication causing these effects (Voriconazole) so hopefully the addition of this new med will help lessen those effects.  The transplant pulmonary team stopped by a little bit ago.  They seem encouraged that while he hasn’t gotten much better he hasn’t gotten worse either.  I’m thankful for this but I’m ready for some signs of progress and Jody is too.  For now we cling to the fact that he hasn’t gotten worse and we look forward to the day I can tell you he’s actually gotten better.

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Five Dreaded Words

16 Aug

“I think I’m getting sick.”  Those are some of the most dreaded words for a CF wife to hear.  There is a lot of physical, emotional, and financial stress behind those five words (physical, as in coordinating childcare, getting things done at home, rotating between home, hospital, and work, etc.).  When Jody speaks those words I’m usually not surprised and often it’s something I’ve wondered about myself.  It takes a conscious choice however, to move from denial of another infection to accepting the inevitable, and seeking treatment. This begins by making a dreaded phone call to Jody’s CF team, alerting them to his symptoms and our suspicion of another infection.  Such was the case this week.  We enjoyed the entire month of July free of infections and hospitalization, for which we are oh so thankful!  Suspecting our infection-free period was coming to an end, Jody made that dreaded phone call this Tuesday and was seen in the CF clinic on Thursday.

As a result of Jody’s complicated (antibiotic) allergies with anaphylactic reactions, we have been told in the past that he is no longer allowed to start IV antibiotics from home.  Instead, his team feels he needs to be monitored closely, in a hospital setting, to ensure his safety when initiating these powerful drugs.  Because of this, we left for our Hopkins appointment on Thursday with our bags packed, prepared to stay, but hoping to return home.  And that’s just what we did!  Surprisingly enough, Jody’s doctors decided to put him on the same antibiotic regimen they used in June (Zyvox, Zosyn, & Colistimethate), and felt he could begin them from home since they were well tolerated before.

Jody's "Luggage" (O2 tank and a continuous IV pump).

Jody’s “Luggage” (O2 tank and a continuous IV pump).

Yesterday morning all of his supplies were delivered.  I inserted and dressed the needle in his chest (he has an implanted port for medication administration), and with the Epi pen nearby, he began all of his antibiotics, thankfully without any difficulties or reactions.  For the next two weeks (at least), Jody will have some extra “luggage” to carry around, as he puts it, referring to a continuous IV pump used for one of the three above drugs.

Jody's continuous IV pump

Jody’s continuous IV pump

The advantage to this pump is that he doesn’t need to wake up early and during the middle of the night to give himself his medications since it will do it automatically while he sleeps.

We’re really glad Jody was able to avoid another hospitalization.  I work 24 hours this weekend and it gives me much peace of mind to know that he will be at home, relaxing, instead of in the hospital where I would be missing out on his care and physician visits.  Still I wish I could be home with him this weekend but such is the life of a CF wife.

Completely off the subject, the wait for transplant continues.  August 25th will mark five months of being active on the list.  After getting the first call for his new lungs only a month after being listed (which turned into dry run 1 of 2) we naturally assumed transplant would happen sooner rather than later.  Honestly, for a variety of reasons, we truly believed it would happen in June or July.  Our oldest daughter turns six August 24th, and will begin kindergarten the next day (8/25), so we are now hoping that transplant will at least hold off for this, especially since she has a lot of anxiety about starting school.  It’s hard to think that because transplant hasn’t happened yet we will miss out on a lot of her kindergarten experience when the time does come, and it also poses a lot more work for our parents, who do not live in our school district, and will need to transport her to and from school everyday.  Our youngest also starts preschool in the beginning of September so she will need to be transported back and forth as well.  This is one of the reasons we hoped transplant had happened already.  On the flip side, we understand that in order for Jody to get his new lungs it means the loss of another life, and that’s not something we want to rush, especially just to make our schedule more convenient.  Schedule aside, Jody is ready for his transplant.  He’s tired of the hassles of Cystic Fibrosis, the struggle to breathe, the inability to do the things he enjoys, and of the need for continuous oxygen.  While we may not understand it, we trust that God’s timing is better than ours, and hold firm to the belief that Jody will get his new lungs in God’s most perfect time.  Until then, please continue to keep him, and our family in your prayers.

 

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Rare Moments

18 Jul

It’s been a few weeks since I’ve given you an update on Jody and often no news is good news.  June was a rough month for him, spending a lot of time in and out of the hospital or home sick and on IV antibiotics.  Typically when Jody finishes up a three week course of these antibiotics (assuming he’s been on the right combination of them), his energy returns and he starts feeling a little better.  Usually his PFT’s (lung function studies), improve slightly as well.  This go-round was no different.  In July, the girls and I appreciated seeing him spend less time in bed sleeping, and more time awake and active (as active as one can be in end stage lung disease where every activity takes your breath away).

One day this month the four of us even spent a relaxing day at a friends in-ground pool.  Although Jody was tied to his O2 tank, he could leave it on the side and at least stand in the pool, by the edge, and get wet.  The girls enjoyed having him there, even if he couldn’t swim with them, or throw them in the water like old times.  That day Jody took his afternoon nap on a lounge chair under an umbrella, while the girls and I enjoyed a rare (as of late), fun summer afternoon.  While it seems everyone around us is enjoying summer to the fullest, free and unhindered by disease, we are learning to be thankful for these rare days, hours, and moments when we can forget about the past and future, so full of uncertainties, and focus on the present.  Moments like these are good for the soul.

As the saying goes, all good things must come to an end, and this is especially true when speaking of Cystic Fibrosis.  We’ve noticed a pattern for Jody where after about three weeks of IV antibiotics he starts feeling pretty good, but sadly it only lasts about three or four weeks.   Soon “good” turns into “okay,” and okay turns into “lousy,” and lousy turns into a hospitalization.  Yesterday Jody had a routine check-up in the CF clinic and we could classify him as being in the “okay” category.  He’s been feeling a little more short of breath, his lungs are a tad more junky than normal, and his PFT’s are a little down (not quite as bad as they were in June).  If left untreated, the chances are Jody will quickly move from “okay” to “lousy” and I already told you where that will land him.  Hoping to prevent this, the doctor ordered oral antibiotics (in addition to the ones he takes daily to hold the chronic bacteria in his lungs at bay).  She also wants him to increase his oxygen to 6L with activity (showering, taking care of our girls, climbing steps, etc.).  The fact that he is now requiring 6L of O2 should bump up his score on the transplant waiting list.  More oxygen requirements also means bigger, less convenient tanks for going out.

We had been hoping to go out for dinner to The Cheesecake Factory at Baltimore’s Inner Harbor following Jody’s appointment, if he felt up to it.  The last time we did this was a little over a year ago to celebrate a good appointment.  We knew this wouldn’t be a celebration, but rather, one of those rare times when we live in the present, forgetting everything else going on in our lives, and enjoying the simple moments in life.  And so we did, big oxygen tank and all!  We even took a very short walk after dinner.  I have been working on contentment, in suffering and in waiting, and as we stood there, overlooking the harbor, hand in hand, oxygen along side, I felt content.  I felt thankful, for the health Jody does have, and for the oxygen tank which allowed us that moment.  A positive attitude and contentment in this situation doesn’t come easy; those “lousy” days get the best of me sometimes, but I think it’s those few “good”, I mean really good, days/moments that get us through the bad.  It’s also the hope that eventually, after transplant, the lousy days will be few and far between as they are replaced with days filled with pure goodness.  Until that time comes, we’ll continue to relish the rare moments in our present life that make it enjoyable and endurable.  I hope you will too.

 

 

 

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Hotel Hopkins Celebration

17 Jun

Well, my gut feeling was right.  Last night Jody was re-admitted to the hospital which means we’ll be celebrating our 9th wedding anniversary (today) here at Hotel Hopkins.  Jody joked that it’s too bad he can’t get a pass to take his IV pole and go to The Cheesecake Factory for a date.  In due time I guess.  We’re just thankful to be together.

The reason for this admission is because Jody simply isn’t improving on his current antibiotics.  His sputum culture from last week is showing that one of the bacteria in his lungs is resistant to Meropenem, one of the three antibiotics he is taking.  This would explain why his condition isn’t improving.  Let me explain this process a little more for those of you non-medical readers.

Every time Jody is admitted to the hospital (and usually even for routine clinic visits), the doctors request that he give them a sputum sample from his lungs.  This sample is then sent to a lab where (in Jody’s case) it grows bacteria.  Once the bacteria is identified, further testing is done to determine which antibiotics will be effective in treating the bacterial infection.  This process (growing bacteria) is slow and the final results can take a week or more to come back. Until those culture results are finalized, choosing the right antibiotics can be a bit of a guessing game.  When Jody was discharged last week the final results of his culture were not back yet so he was started on a combination of antibiotics that have worked for him in the past (since the bacteria in his lungs is usually the same each time).  In my last post I mentioned that Jody didn’t seem to be getting better and that I questioned if he was on the right antibiotics.  It turns out he wasn’t.  Because of Jody’s allergies his team of physicians have decided against allowing him to start IV antibiotics at home.  Instead, he was asked to come into the hospital so his medications could be changed and doses adjusted under supervision.  The plan is to continue the oral Zyvox, switch the IV Meropenem to Zosyn, and increase the dose of IV Colistimethate (I’m including these names more for our records than because I think you care about the specifics of his antibiotics).  As long as these medication changes are well tolerated, he should only be in for a few days.

Now, a message for Jody:

Jody, since this is our anniversary and all, I’d like to say that you are awesome!  I have watched, countless times, as you’ve gotten stuck with needles, big and small, had nearly every square inch of your body poked and prodded, been tested, xrayed, endured great pain, felt lousy, struggled to breathe (and continue to do so), given up things & hobbies that you enjoy, sat on the sidelines, pushed yourself and fought… and continue to fight, all because of Cystic Fibrosis.  And what I find most inspiring is that you do it all without complaint.  I know it can’t be easy to walk in your shoes, but you keep going, putting one foot in front of the other, and you keep your head held high.  You impact people wherever you go.  You’re climbing this mountain with great determination and perseverance, and I know your efforts will be rewarded.  I’m so blessed to walk this journey with you, thank you for choosing me.  I’m leaving you with a song* that speaks to where we are in life right now, and I hope it will encourage you in the fight to know that I will always be by your side.  Happy 9th anniversary, I love you!

P.S.  If you’re a reader who enjoys pictures, you can sneak a peek of a few more wedding photos by clicking here.

 

*Angel By Your Side – Francesca Battistelli

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Gut Feelings

14 Jun

This post will be brief, but I want to update you on Jody.  He was discharged from the hospital on Wednesday (6/11), after a six-day stay.  Although he needs it, we still do not have a CPAP machine at home because we are waiting for approval from our insurance company (it frustrates me greatly that insurance companies dictate health care so much).  Hopefully this will be straightened out soon so Jody can get the treatment he needs.  One good thing to report is that we were able to switch out the O2 compressor we had at home (which only went up to 5L of oxygen) for one that is high flow (goes up to 10L).  It’s nice to know that we now have “extra” O2 should Jody need it.

In the last three days that Jody has been home, he’s been spending a lot of time sleeping and has been getting a lot of chest pains (this has been a chronic problem, which the doctors describe as irritation in the lining of his lungs).  Although this is an ongoing issue for him, the pain seems to increased right now.  I also think he looks sick, and my gut feeling is that he’ll be back in the hospital next week.  It could be that he’s not on the right combination of antibiotics to treat the infection in his lungs, so they might need to change them up a bit.  This was the problem we had last fall when he was hospitalized about four times until they finally found the right concoction of drugs to knock the “bugs” out of him.

Jody does not have much bounce-back left.  I feel like he’s walking a very fine line right now.  He really needs this transplant before he becomes too sick to get it.  So in addition to the 30 Days of Prayer for Jody prayer challenge, please pray that his current condition would improve so he can avoid a repeat hospitalization next week, or further deterioration prior to transplant.

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CF Exacerbations

6 Jun

Bridge from parking garage to JHH

Good morning!  Many of you probably saw the Facebook post on our Jody Needs Lungs page last night that Jody was admitted to Hopkins yesterday evening.  This was, of course, related to his Cystic Fibrosis, but completely unrelated to transplant.  This is a typical CF exacerbation, like those you have read about many times here on my blog.  It’s hard to know what to say (to keep you interested) that hasn’t already been said, and yet, this is our life.  This is Cystic Fibrosis.  While you might read this and think, “Oh, it’s just another infection,” to us its a lot more than that.  It impacts our living, working, and for Jody, breathing.  Even though a hospitalization always puts a kink in life, I’m so thankful for this “little” exacerbation because I know it could be a lot worse.  It could be pneumonia, or something worse, and he could be very sick; too sick for transplant.  So I’m counting my blessings and enjoying the time I have to spend at his bedside, making memories.

Airway clearance by chest PT

This time Jody’s symptoms primarily included increased shortness of breath, requiring more oxygen use, complaints of frequent headaches, especially through the night or when napping, and feeling more tired.  Again they want to check blood gases (both venous & arterial) to see if his carbon dioxide (CO2) level is too high.  Today he was started on his usual triple IV antibiotics, and he continues with his standard hospital services, such as nebulizer treatments, rehab, and chest physical therapy (PT).  Above is a picture of Jody from his chest PT session this morning with therapist, Lauren, who is pounding on his back and sides.  This is a form of airway clearance which helps to loosen and break-up the mucus from his lungs.  At home Jody wears a mechanical “vest” to shake the mucus loose, helping to clear his airways.  Jody also had lung function tests done this morning and his lung function is now down to 22%, the lowest it’s ever been (which explains the increased shortness of breath).  We hope that after this course of antibiotics that number will improve ever so slightly.

If things progress as planned, we don’t anticipate this being a long hospitalization.  Jody will finish his three weeks of IV antibiotics at home after discharge, as he has done many times in the past.  He also continues to wait for the call for his new lungs, which we pray will come before these “little” exacerbations become more serious, hindering Jody’s ability to get a transplant.

Once again I want to thank all of you who are praying for us and continuing on in the “30 Days of Prayer for Jody” prayer challenge.  Someone recently asked me if we feel prayed for, and we do.  Thank you!  Please keep the prayers coming our way.

 

 

 

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The Calm Before the Storm

11 May

Lately I’ve been posting blog updates roughly once a week, but thankfully this week I don’t have much to report.  Jody is stable and infection-free right now, and it’s wonderful!  I hesitate to say that aloud because in times past, as soon as I’ve told someone that he’s doing well, it changes, and an infection hits.  When things are well and good (as well as they can be with 25-30% lung function), it makes me dread the sickness that will inevitably come.  Even the lung transplant and recovery is something I’m not especially looking forward to.  I know that it will include months of high-stress, juggling caregiving, parenting, working, and keeping house.  I know that during that time I will desire to be exclusively at Jody’s bedside, to go to appointments with him, to help him recovery and simply to be there for him however he needs me.  But those other responsibilities will call and I won’t be able to be there 100% the way that I would like.  While Jody knows and understands this, it’s hard for me to accept.  As you can imagine, knowing this stress is just a phone call away, I’m super thankful for the calm before the storm.

Dr. Shah (Jody’s transplant surgeon)

Since I don’t have too much to report this week, I’d like to share with you a short video where Jody’s transplant surgeon, Dr. Shah, talks briefly about the lung transplant process at Hopkins.  This is the surgeon I talked about last week who offered to pay for our gas and dinner because he felt badly that our crazy, stressful drive for transplant ended up being a dry run.  This is also the man who will hold Jody’s warn, hard-working, failing lungs in his hands, and replace them with those which will bring life again.  I couldn’t be more thankful to him and the rest of Jody’s CF and transplant teams.  Please watch this video to learn more about Jody’s upcoming transplant.

 

One more thing, we could use your prayers for extra special protection over Jody’s health.  One of our daughters has come down with a cold and as history would have it, Jody inevitably ends up with an infection, leading to a hospitalization when this happens.  It goes without saying that we prefer to keep him home and well.  So please join us in praying that this cold goes away quickly and without spreading to the rest of our family.  Thank you in advance.

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