The Auction: Fun, Photos & Facts

15 Oct

Our Jody Needs Lungs benefit auction is over and what a day it was!  We couldn’t be at the event since Jody was just transferring out of the ICU, but we heard from people that it was a great time!  Below is Jamie, our friend and auction planner (standing 10th in from the right), along with her the team of volunteers who made this day possible.  If you were one of those volunteers and are reading this post… thank YOU!  You helped to make this day run smoothly and successfully and we appreciate that you were willing to give up your precious time on our behalf.

JNL Auction Volunteers

Since we couldn’t be at the auction, John Martin of John Martin Photography, kindly volunteered to photograph the event for us.  It was great to know we could count on him to be our ‘eyes’ at the event.  We loved seeing the pictures he took and thought we’d share them with you.  Rather than going into details about the event, we’ll let the pictures do all the talking.  To view the online gallery, click below.  Thanks again John, for giving us this gift.

Link to auction photos by John Martin Photography

When planning this event we decided on having a photo booth since they are all the rage right now.  Jamie came up with a fun way to combine photo booth silliness with encouragement for Jody by asking attenders to write supportive messages on a chalk board frame when they had their pictures taken.  Robert Buzzard of Robert Buzzard Photography willingly agreed to help us out with this activity and he has provided the link below for you to see the fun for yourselves.  Thank you Robert for supporting us by donating this activity at the auction, Jody was encouraged by all the messages.

Link to photo booth photos by Robert Buzzard Photography

Password: Jody_DSC0134

About a month before Jody’s transplant he and I created a short video that could be shared at the auction.  While it’s far from perfect we were proud of how it came out and thought we’d share it with you.  This video was shown just before the live auction began.  We hope it creates awareness of Cystic Fibrosis, a disease which frustratingly, few people know much about, and one that is near and dear to our hearts (you might not be able to view this video from email, but will probably need to go to the blog site itself).

Here is part of a letter that was read for us at the auction and seemed fitting to share:

“The day after Jody was told of his need for a transplant, a transplant social worker met with us to discuss fundraising. We sat there dumbfounded that #1, it was time for him to get a transplant, and #2, that this woman was suggesting a fundraising goal of $100,000!!! We were told the first year post transplant is estimated to cost $70,000 alone. Although we are so very grateful for our insurance to help with these costs, the out-of-pocket expenses seemed overwhelming and impossible to face.”

“When our friends got word of this news they quickly took the burden of fundraising off our shoulders. Brainstorming began, a logo was designed, a website was created, word spread and fundraisers started. We have been overwhelmed by the outpouring of support and the money that was raised even before transplant occurred. We felt relieved to know that we were well on our way to being financially prepared for Jody to receive the call for his new lungs.”

Having said that, thank you, thank you, thank you to each and every one of you who had a part in making our benefit auction a success.  Whether it was in planning, prepping, getting or giving donations, picking up items, sharing the event, volunteering on the day of the event, purchasing items at the auction, YOU MADE IT POSSIBLE!!!  Together you added $13, 078 to our transplant fund!  This figure does not even include the money raised from selling t-shirts at the auction, which we hear were a big hit (on a side note, we have a few shirts left if you are interested in purchasing one leave a comment).  We couldn’t be more pleased with the outcome of this event.

Now that the auction is over, we want to tell you again how much it means to us to have your emotional, practical, prayer, and financial support.  Already, this transplant has been expensive (food, outrageous parking fees, fees for use of the room TV, purchasing medical equipment for home, missed work, etc). and we haven’t even left the hospital yet.  Your financial support has given us so much peace of mind as we face these costs as well as the hospital bill and medication and doctors expenses throughout this first year post-transplant.  From the bottom of our ‘healthy’ lungs, THANK YOU for your support!

*When life settles down a bit I intend to create a photo book as a keepsake of the auction.  If you have any photos to share with us, please email them to tiffany@supportjody.com.  You can also leave any comments or funny stories you have about the day here on the blog so they can included in our photo book.  Help us remember the auction through those of you who experienced it firsthand.*

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.

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.

Return to the ICU

4 Oct

The night before last, the one when I posted about Jody’s issues with shortness of breath and oxygen desaturation, was a rough one.  For whatever reason (blog writing, the Late Night Show with Jimmy Fallon, nursing tasks, bathroom visits), we didn’t end up going to bed until around 2 am.  Three hours later we were suddenly awoken by a leaking arterial line, and it went down hill from there (unrelated to the A-Line).  Jody’s shortness of breath was ridiculous.  His O2 sats remained low.  I actually felt bad for his nurse because, like me, I think he wished he could do more, or give him more oxygen at least.  The NP happened to come in for her morning rounds and she could see how hard Jody was working to breathe.  She said she was going to telephone Dr. Shah (Jody’s transplant surgeon who calls all the shots), and within minutes she returned to say they were going to transfer him back into the ICU where he could get high flow oxygen.  It seemed odd to me that for so long they were against giving him oxygen (or much of it), and suddenly now it was okay.  I wondered if the ICU could have been avoided altogether if they had given him more O2 prior to that point.  Either way, I wasn’t all that surprised or upset about the transfer.  As much as I dislike the ICU I liked the fact that he would be more closely monitored, and that he would finally get help with breathing.  Once the decision was made to transfer Jody, an ICU doctor came up to evaluate him and impressively, within a matter of 20 minutes, he was on his way out the door.  I stayed behind to pack up our things since we had pretty much moved in and I knew I wouldn’t be allowed back to see him until after they had him settled.

In the ICU they placed him on 6L of oxygen with an order to titrate it down as low as he could tolerate while keeping his sats 90 and above.  They never did put him on high flow (which again makes me wonder why they couldn’t have given him 6L in the step-down unit).  Yesterday Dr. Shah told his ICU nurse to give him a break.  No walking or unnecessary exertion.  The plan was to grant him an easy day with minimal interruptions so he could take it easy and rest.  In theory this sounded like a good plan.  Unfortunately it did not work out entirely as planned.  It wasn’t his breathing that kept him from resting it was the side effects of his medications.  He experienced hallucinations and near constant tremors throughout his entire body (previously these were only seen at rest, this day it was while awake as well).  It felt so weird to talk to him as if he were a child because of the hallucinations.  Sometimes it seemed that while he appeared to be looking right at me, he was actually looking through me.  It was kind of a lonely feeling to know that my Jody wasn’t really there, and it was frustrating for him because he knew that he wasn’t in his right mind.  It was hard for him to get quality sleep because he was constantly awakened by a jerk or tremor, a hand gesture (trying to touch something that wasn’t there), or a hallucination.  The doctors were well aware of this issue.  On a positive note, Jody’s Tacrolimus level, an immunosuppressant contributing to these symptoms, was much decreased yesterday and today it actually came back on the low side.  While he is not free of the above issues yet, they are much improved when compared to yesterday.  Truth be told, he is on a lot of meds that can cause these symptoms.  The doctors speculate that his Voriconazole (an IV anti-fungal medication) is also the culprit for some of this, and especially for his ongoing vision problem.  The thing is, one must weigh the benefits of these drugs against the side effects.  In this case the benefit, healthy, functioning lungs, far outweigh the cost of hallucinations, tremors, and visual disturbances.  One cannot live with sick lungs, as we know all too well.  While these side effects are annoying, discouraging, and even scary at times, we trust they will not be long-term issues for Jody.

Today Jody’s oxygen requirements have ranged from 2-6L via nasal cannula.  He continues to struggle with extreme shortness of breath with any movement.  Today the plan was to attempt a walk or two with the knowledge that he would need additional O2 support to make that happen.  At lunchtime Jody took his first walk using a Venturi mask which delivered 50% oxygen.  With his nurse, physical therapist, IV pump, cardiac monitor, and myself by his side, and a chair wheeled behind, he walked 235 feet!  He required three breaks during this time to allow his body to rest and his O2 sats to recover (even with the Venturi mask they dropped into the low 80’s).  It’s still mind-boggling to me that just four days ago he was walking one mile at a time with no breaks, and no drop in his O2 saturation.  It feels like we are starting back at square one.  Regardless, I was so proud of him for getting out of bed, pushing past the pain and struggle for air, and walking in spite of it all.  Even better, five hours later he did it again.  This time he walked about 400 feet with no breaks at all, and his O2 sats were a little more stable.  Again I made sure he knew how proud I was of him.

We are still waiting for the official result of his sputum culture which shows gram negative rods.  Because of the length of time it is taking for the results to come back the doctors have an idea of what it will show and have already made a few changes to his IV antibiotic regimen.  His ICU nurse, with years of experience, told me tonight that Jody might have broken his record for the most antibiotics given in a 12 hour shift.  Needless to say, he should be well covered for any and every bacteria that is working against him.

Jody’s ONE ice chip

Jody is still unable to eat or drink.  He is allowed one ice chip every two or three hours.  His mouth is so dry and it feels like a cruel joke to say, “Here is your (one) ice chip.”  As one who guzzles water all day long this is inconceivable to me.  So… as any good wife would do, when it’s time for another ice chip I search the cup for the biggest, fattest chip I can find.

The wait for Jody’s new lungs is over, but now we find ourselves in another period of waiting.  We are waiting for the new lungs to heal.  For two weeks Jody experienced a fraction of what it is like to breathe freely and comfortably, not that those weeks were without their challenges, they weren’t.  Sadly Jody’s now back to struggling for each and every breath he takes, almost more so than with his old CF infused lungs.  And so we wait.  And we pray.  And we thank God for this gift he’s been given because we know it will get better.  But this is hard.  It’s so hard, especially on Jody.  Tonight he seems discouraged.  I remind him of his strength, his fight, and that he can do this!  I remind him that even Jesus grew weary (as commented on our Facebook page).  I remind him that I love him and that I’m so proud of him: his attitude, his drive and his endurance.  Tomorrow is a new day, and will bring renewed fight and determination, of that I am sure.  He will beat this, and he will breathe easily again soon.  This I know.

The Story Continues

2 Oct

Here is the continuation of the post I wrote last night.  Jody’s morning blood work revealed that his WBC’s dropped slightly, down to 25 from 28.  It’s a small drop, but it’s not an increase so we were thankful for that.  All of the cultures done to check for infection continued to come back negative, leaving the doctors wondering what happened to make this sudden change in Jody’s status.  One doctor even mentioned that they almost hoped his bronchoscopy would show lots and lots of mucous in his lungs so they could pin point it to that, clean him out and watch him get better.  Unfortunately that wasn’t the case.

Overnight last night Jody slept wearing 1L of oxygen and his O2 sats ranged for the most part between 87-89%.  This morning we noticed early on that his shortness of breath seemed increased.  It felt (and still does) like cruel and unusual punishment to simply let him struggle to breathe.  We attempted two short walks today, and each time his O2 dropped to 72% at its lowest.  During that time they did increase his oxygen to 2L, but were quick to turn it back down to 1L as soon as his level returned to 80%.  I’ve seen Jody short of breath more times than I can count over this past year, but today has to be one of the worst times.  I desperately wanted to crank up the O2 and let him breathe comfortably.  I don’t understand why oxygen is so “toxic” to his lungs, as Dr. Shah puts it.  I did ask this question to the NP today and she said it has to do with the free radicals in the oxygen and that it can negatively affect the sites of anastomosis in his lungs (that’s too much science for me).  I completely trust that he knows what he’s doing, it’s just hard to be on this end, to watch someone you love struggle with something that should be natural and is so necessary to function in life.  Even moving from lying down to sitting on the edge of the bed elicits shortness of breath like I’ve never seen.  Sitting across the room from him I can hear the crackling in his lungs as he breathes.  I hate watching, hearing, and listening to him gasp for air.  I know he doesn’t enjoy this much either.

I don’t claim to know how to read a chest x-ray (it’s just not something that I need to know in OB nursing), but I can see the changes in his lungs compared to a week ago.  Initially there was one white patchy area in his left lower lobe that the docs have been keeping an eye on since surgery.  Now, it looks like both of his lungs are filled with white patches.  It’s still hard for us to wrap our brains around how much damage was done by whatever it is that caused this, and how fast it happened.

Last night I told you Jody was supposed to have his repeat swallowing study today.  When the time came, he just wasn’t feeling up for it, and told them he wanted to wait for another time.  The doctors agreed but did change him back to NPO (nothing by mouth, no food or drink) in the event that silent aspiration is the root of this problem.  Until Jody is feeling ready to repeat this test they put him back on tube feedings for his nutrition and medications.  In the meantime, when he’s not eating or drinking, if his lungs start to improve, it could be confirmation of aspiration.

Late this afternoon brought some good news.  The pulmonary fellow returned to the room and excitedly announced that they found bacteria in one of Jody’s sputum samples from Tuesday.  I’ve never been more excited for the presence of bacteria!  She told us that both her and her attending threw their arms up in the air and happily exclaimed, “Yes!!” when they saw the results.  In case you’re wondering why the celebration over bacteria, which normally is a bad thing, it’s because it gives us an answer.  It’s not the complete answer to the change in Jody’s condition, but it’s a start.  An answer is better than no answer.  The exact bacteria has not been identified yet, but it will be soon, and that will help greatly with knowing how to treat and eliminate it.  Currently Jody is on ten different (mostly IV) antibiotics.  Many of these he has been on since surgery, others have been added since his decline to ensure he is covered for a wide range of bacteria.  With the bacteria identified they will be able to tailor his meds to knock it out.

I also want to mention that Jody’s blood work has shown an increased tacrolimus level in his blood.  This is one of the immunosuppressants he is taking.  The normal range is 10-12 and he was 24 yesterday and 22 today.  He is having a lot of numbness in his legs and feet as well as frequent twitching in his arms and legs, especially when sleeping.  We’ve also noticed he’s been talking a lot in his sleep, which is unusual for him.  This level being so high makes him more immunosuppressed, at risk for infection, than he should be.  More concerning is the impact of this on his kidneys.  Between the big gun antibiotics he’s on, the dye from the CT scan yesterday, and the increased Tacro level, and the many other meds he’s getting, his kidneys are sure to take a hit.  His creatinine (a measure of kidney function) has already jumped and they expect it will get worse before it gets better.  Unfortunately, this is a necessary thing.  For the protection of his lungs he needs to be on these medications.  It’s also important for his lungs to stay dry so they can’t flush him with fluid which would benefit his kidneys.  It is our hope and prayer that any damage done to his kidneys will not be permanent.

Whatever happened to Jody’s new lungs is going to take time to fix.  The story is far from over.  It is discouraging but we are trying to be patient and stay positive.  I keep telling myself that one year from now Jody will be doing great and this will be nothing more than a distant memory.  This is a means to an end, one that I’m believing will be awesome.  Please continue to keep us in your prayers until that time comes.

To be continued…

Bump #2

1 Oct

I could probably call this post bump # 4, 5, or 6 after all the little setbacks we’ve had since Jody’s transplant two weeks ago.  However, as you read in my last post, we’ve had our fair share of triumphs too, and we can’t forget those.  Unfortunately, the last two days were those where the setbacks seemed greater than the recovery, and we need your prayers (although I will say that today was a better day than yesterday).

Before I begin let me give you a very basic science lesson.  Our immune system is designed to protect our health.  It recognizes things found in the body that do not belong there and works to attack or fight them off.  The problem with organ transplantation is that the body does not differentiate between bacteria or viruses that should be fought off, or a newly transplanted organ(s), which should not be attacked.  This means, that the body would fight to get rid of the new organs just like it would fight to get rid of a bacterial or viral infection.  Since one doesn’t want the body to fight a new organ, transplant recipients must take immunosuppressants which basically trick the body into thinking the organ belongs there.  My understanding is that of all the organs that are transplanted today, the lungs require the highest doses of immunosuppressants.  Unfortunately this makes one at high risk for infection because it lessens the body’s ability to fight off the bad germs or bugs they encounter.

Since surgery Jody has been hit hard with all sorts of medications.  He’s on huge doses of steroids and immunosuppressants to knock out his immune system and prevent his body from recognizing his new lungs as foreign and attacking them.  As I mentioned above, this puts him at high risk for developing infections.  Hence the gown, glove and mask we must wear.  On Monday (9/29) the docs noticed Jody’s white blood cell (WBC) count, an indication of infection, had more than doubled (from 12 to 26).  Because clinically he had no other signs of infection they figured it might have been a fluke thing and said they’d recheck it the next day.  Yesterday morning (9/30) the WBC’s jumped to 28.  At that point the team felt it was time to start searching harder for signs of infection.  Up to that time all the cultures that were sent (blood, sputum, urine, stool, etc.) had all been negative, meaning no signs of infection.  They looked at all of the lines and tubes he has as a potential source of infection but everything appears normal to the naked eye.  They did culture a few more sources just to be on the safe side.  For the most part Jody looked and felt fine so there was no real concern.  I did notice he seemed a little more short of breath during his am walk but Jody contributed this to increased chest tube pain and I didn’t think much more than that.

As the day went on I noticed it seemed like Jody was getting increasingly more short of breath. His pulse ox or O2 saturation (a measurement of the oxygen level in the blood) stayed around 95%.  The pulmonary team rounded early afternoon and they could see Jody was working harder to breathe, but noted that his O2 sat had remained unchanged.  He looked and felt lousy.  It was a stark difference between the way he looked and felt the day before, when he walked a total of three miles.  The pulmonologists discussed how odd it was that his oxygen level was unchanged.  If there were signs of infection, rejection, etc. they would expect to see his O2 level go down.  About 45 minutes after they left it did (down to 82%-88%).  Dr. Shah is adamantly against putting oxygen on his lung transplant patients and so they just watched his numbers.  They did give him a dose of IV Lasix to help pull off any extra fluid that could have been causing the problem.  This didn’t seem to make a difference.  Dr. Shah also ordered a bronchoscopy for first thing this morning.

Overnight last night Jody’s oxygen saturation remained in the range of 82-88%.  As an OB nurse I often hear parents say they had a difficult time sleeping because they felt the need to watch their baby to make sure he or she was breathing.  This is how I felt about Jody last night.  I could hear his slightly labored breathing and the seemingly constant sound of the monitor, quietly beeping to alert someone of his low oxygen level.  It’s weird to me that the doctors were okay with his O2 level being so low and didn’t feel the need to give oxygen (although I will say he didn’t appear to be in a lot of distress).  I think perhaps the nurses would have liked to have given oxygen, but they have learned the hard way, that Dr. Shah doesn’t like it.  Instead they just watched him.  Jody remembers waking up more than once to multiple nurses standing still over him just watching him breathe.  I did that a time or two myself too.

We were woken up bright and early this morning so that Jody could go down for his bronchoscopy.  We were anxious to find out what this procedure would show.  In pre-op the anesthesiologist looked at Jody’s O2 levels and felt they might need to intubate him and put him on a ventilator (breathing machine) in order for him to tolerate the procedure.  If that happened he would probably need to stay on the vent for a period of time after the procedure and might have even transferred back into the ICU.  I wasn’t expecting this news and became very tearful at the thought of Jody needing to go back on the vent.  When the pulmonologist arrived before the bronch I heard her telling the anesthesiologist that the procedure would be quick and that she didn’t feel endotracheal intubation (breathing tube) would be necessary.  Keep in mind the anesthesiologist was basing his opinion on Jody’s low O2 sat on room air (without seeing how he would respond to supplemental oxygen).  I hoped the pulmonologist was right and thankfully she was, Jody tolerated the procedure without difficulty.  I was told his lungs still look healthy on the inside and that there wasn’t a lot of mucous or junk built up.  That being said, they washed and cleaned out what they could.  The doctor reassured me that this first month post transplant is really hard but that Jody is going okay and is going to get better.

It wasn’t long after the bronch that Jody was transferred back to his room.  Shortly thereafter we were told the doctors ordered a CT scan to rule out a pulmonary embolism (blood clot in the lungs).  During this time his O2 sats stayed low so they did finally get permission to give 2L of oxygen.  Around lunch time Dr. Shah stopped by briefly to see Jody.  He said that the CT scan showed that both of his lower lobes are looking pretty “beat up,” and much worse than a week ago.  He seems to believe that Jody could be experiencing what is called ‘silent aspiration.’  This occurs when secretions, food or liquid enter into the airway (and in turn the lungs) and no cough, throat clear or distress occurs.  Think of a time that you swallowed something wrong.  Most likely you began to cough and immediately knew you swallowed incorrectly.  Because of Jody’s impaired ability to cough he could be aspirating without any outward signs of having done so.  The issue with this is that it can cause serious complications, such as pneumonia.  If Jody is aspirating it could also be the result of reflux of gastric contents.

Who knows what caused this sudden, drastic change in Jody’s condition?  Is it infection?  Results of today’s cultures are still pending.  Is it Rejection?  Dr. Shah doesn’t think so.  Dr. Shah’s theory of aspiration sounds like a reasonable one, especially since Jody began eating on Friday, his WBC’s jumped on Monday, and by Tuesday his symptoms began.  Maybe I was wrong about Jody’s ability to swallow (although he did pass his last test with flying colors)?  Either way, tomorrow they will be taking him for a fourth swallowing evaluation.

Today when we learned the results of Jody’s CT scan we asked Dr. Shah if this is something that’s going to resolve and go back to the way it was with Jody breathing easily on his own and his O2 sats in the normal range.  He said he hopes so but there are no guarantees.  There is no way to know if his lungs will recover 100%.  Obviously this is a scary thought for us.  We prayed for these lungs for so long.  We prayed for Jody’s recovery.  We prayed for new life.  Jody’s been given this gift and somehow it feels important, especially for his donor and his/her family, that these lungs work and work well.  We know that God is bigger than any of this and we pray that we’ll get over this bump just as quickly as it came.  We pray full restoration of the damage done.  We pray his oxygen levels will return to normal (I want to see that awesome 100% again).  We also pray against some of the negative side effects Jody is having which result from some of the medication he is on.  Please pray sincerely that God would hear our prayers and bring the healing that Jody needs to move forward.

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