Tag Archives: lung transplant

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.*

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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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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.

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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…

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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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Four-Day Update

29 Sep

Over the last four days Jody has continued to make progress in his recovery.  On Wednesday I told you we hoped to get the doctors to reorder Jody’s swallowing test since he was feeling better.  Surprisingly enough, they did, and it was scheduled for Friday afternoon.  That morning the doctors planned to make some big changes, which I’ll describe later, but we asked that they hold off on all of those things until after the swallowing test.  We wanted Jody to be in his best shape for the test, and the providers understood and agreed to hold off on the changes.  It felt like there was a lot riding on this test, but I tried to down play it, and encourage Jody to do the best he could.  He left seemingly calm, relaxed, and ready to go.  Many of you saw my post on our Facebook page and prayed for him during this time; thank you.  An hour or so later I saw Jody being wheeled down the hall toward his room where I was waiting.  When he got closer he gave me a thumbs up sign.  I asked if that meant he had passed and he confirmed that he had.  Everyone rejoiced: us, the three male RN transport nurses, Jody’s nurse for the day, and the people around the room who heard.  It was a neat moment to see the excitement of complete strangers who had nothing invested in Jody’s ability to eat.  Truly our smiles couldn’t have been any bigger.  Jody’s eleven day stretch of no food or drink had come to an end (long before the doctors thought it would).

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He PASSED!

I thought for sure Dr. Shah was going to start Jody on a liquid or soft diet but amazingly enough he bumped him straight to regular.  Apparently Jody really passed the test (in fact they didn’t even test him with all the food samples because he did so well with the harder liquids).  I firmly believed Jody didn’t have a mechanical problem that was preventing him from swallowing properly, and I’m so glad the doctors gave him a third chance.  Now we really can enjoy the meals some of you have offered to bring when Jody comes home.  Now he doesn’t have to worry about holiday food.  Now I can bake my annual pumpkin whoopie pies that he enjoys so much.  Now we can eat together in the hospital and I don’t need to leave his room every time I eat and drink something.  It’s so wonderful!  To help improve his overall nutrition, for a day or two after his test Jody continued to receive nourishment through his feeding tube in addition to what he took in by mouth.  One thought to his excessive chest tube draining is malnutrition, so by improving his protein the hope is that the tube drainage will decrease.  After counting all the calories Jody consumed this weekend the team decided that he is taking in enough calories by mouth and they have stopped the tube feeding altogether.  At this point we are unsure if the tube will need to stay in ‘just in case’ or if it will be able to be removed prior to discharge.  In case you’re wondering what the first thing Jody asked for when told he could finally eat, it was strawberry yogurt.  Apparently it never tasted so “strawberry.”

Another advantage to Jody being able to swallow is that he can take pills as well.  This means that some of his IV medications have been switched over to PO (by mouth).  His IV pole is looking much more empty now, but he’s still not free of it.

Since Jody successfully passed his swallowing test, the doctors were quick to make the changes I mentioned in the beginning of this post.  They stopped his IV blood pressure medication, which they had been slowly weaning down, and they turned off his numbing epidural, transitioning him to oral narcotics instead.  We were very skeptical and even a little fearful about the epidural being turned off.  Each day there has been an ongoing debate between the surgeon who wanted it off, and anesthesia, who said it was necessary for pain control.  It already remained in longer than normal, but that was because his chest tubes remained in longer than normal.  I was so afraid of seeing Jody in the intense pain I witnessed before when they stopped the epidural, so much so that I was tearful as the NP (nurse practitioner) discussed this change with us.  She reassured us that there was a right and a wrong way to make this change (obviously it was done the wrong way the last time), and that they weren’t going to let him go through what he went through before.  We came up with a plan for medications and frequency to relieve Jody’s pain, and I’m happy to report it actually worked!  This is a huge relief.  An added bonus is that with the epidural turned off Jody’s blood pressure stayed in the normal range and has been fine ever since.

Late Friday afternoon an ophthalmologist came to Jody’s room to evaluate the blurred vision and spots he has been having since surgery.  She could tell that he was straining to read her charts but an evaluation of the back of his eyes revealed that everything is intact and healthy.  The most likely culprit of his vision problem is one of the necessary medications he is on to protect his new lungs.  The doctors are closely monitoring his blood levels of these medications to make sure he is not getting too much, which could make his eye problem worse.  Jody really doesn’t complain about this issue, but I know it’s frustrating to not be able to read, text, etc.  We really hope this is a short-term issue that will result in full restoration of Jody’s vision.

DSC_0120BSaturday brought another welcomed change, they removed Jody’s right chest tube.  This tube was inserted about 16″ inside of him (the four tubes he had removed prior were only in about 8″).  Jody reported that instantly that side felt so much better, he no longer had the painful, rubbing feeling.  Unfortunately his left tube was the more painful of the two but that tube is draining too much fluid to be removed.  When that tubes is ready to come out we’ll all do the happy dance for sure.

Jody is still tied down by lines and tubes, but far less than before.  This makes moving around much easier.  It used to take 10-15 minutes just to gather up all of his equipment only for him to walk four feet to the bathroom.  As you can imagine, it’s great to be a little more free to move around.  Speaking of moving, Jody’s doing awesome with his walking!  This weekend he reached a new personal best and did 10 laps around the nursing unit which is the equivalent of one mile, without any breaks.  He’s been doing that two or three times a day.  He’s known around here as speed walker, and the older patients joke about how he laps them.  Two weeks ago Jody could not have done this at all, even with the help of 6L of oxygen.  One week ago he was only able to walk about 250 feet.  Today he walked three miles.  We marvel at the coolness of this!  Praise the Lord for his new, healthy lungs!

Saturday night I went home for the first time so that I could spend the day with our girls on Sunday.  As hard as it was to leave, I felt reassured to know that Jody is much more stable now and being well cared for by the JH team of physicians, nurses, etc.  It was nice to spend some time with our girls, hear how their weeks had been and update them on their Daddy.  Unfortunately it seems both girls have colds right now so I didn’t get much of a break from the masks I’ve been wearing for the past two weeks.  Hopefully these will be short lasting so that they won’t keep the girls apart from their Daddy when the time comes.

Things are moving in the right direction.  It’s a relief to know that the worst part of this is behind us (I hope).  We are continuing to meet with the transplant coordinator for education, in fact, the other day we had a marathon three and a half hour session.  There has been no talk of discharge, probably because of that left chest tube, but we know he’s getting closer.  Thank you for your ongoing support.

 

* Thank you also to those who read and shared the last guest blog post about our upcoming auction.  Don’t forget to RSVP for your chance to win an Olive Garden gift card.

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In Celebration & Support of Jody’s New Lungs

27 Sep

Hi, I’m Beth, a member of Jody’s CF (Care and Fundraising) team.  I’m excited for you to join us for a fun day to celebrate Jody’s new lungs and support his family financially during this expensive first year post transplant. Enjoy food from local businesses, enter to win prizes, bring your kids for family fun, and bid on your favorite items. Join us on October 11th at Lancaster County Christian School, Leola campus (2390 New Holland Pike, Lancaster).

KIDS ACTIVITIES (3 PM – 5 PM)
Activities Include: face painting, outdoor bounce house, pumpkin painting, cookie decorating, and fire truck exploration. A photo booth will be available for silly photos and an encouraging surprise for Jody.

These activities are by donation. With a donation of at least $5 you will also receive a Journeying With Jody Benefit Bracelet.

FOOD
Light refreshments will be available for purchase. Items include Coffee Company coffee, Kunzler hot dogs, Dominion Pizza, Herr’s Chips, drinks, and sweets.

SILENT AUCTION (3 PM – 5 PM)
Items include children’s items, gift baskets, jewelry, household items, services, gift cards, and consignment sports memorabilia. Featuring a signed copy of Marie Monville’s book, One Light Still Shines: My Life Beyond the Shadow of the Amish Schoolhouse Shooting, accompanied by a 1 hour speaking engagement.  If your church, organization, or conference is seeking a speaker who will inspire and bring hope, Marie is it!

LIVE AUCTION* 5 PM
Bid on items including vacations, furniture, home décor, work by local artisans, and unique experiences perfect for a night out or a family adventure. Highlights include a swing set donated by Swing Kingdom, a gas grill donated by JB Zimmerman, and autographed items donated by the Philadelphia Flyers.  Absentee bidding is available for some items. Contact jamie@supportjody.com with inquiries.

*Child Care available during the live auction for children ages 1 – 5.

RAFFLES
Purchase raffle tickets and enter to win a $100 Shopping Spree at Rockvale Outlets. We will also raffle a $35 gift card to the Olive Garden. To be eligible to win you must RSVP on the Jody Needs Lungs Auction Facebook Page that you will be attending the auction. Non-Facebook users can comment below with their RSVP of attendance. You must be present at the auction during the drawing to win this raffle.

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T-SHIRTS
Journey with Jody t-shirts will be available for purchase at the auction for $20.00.  Pre-ordered shirts can be picked-up on the day of the event.

PAYMENT OPTIONS
Debit/Credit accepted through our YouCaring website at checkout. Check/cash preferred when possible.

A special thank you to our business sponsors:

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Click photo for link to RSVP

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Whether or not you are able to attend Jody’s auction please ‘share’ this event with those you know and encourage them to come out in support of Jody and his family.  We look forward to seeing you on October 11th.  It’s going to be a great time for everyone!

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Battle Scars Revealed

24 Sep

Dinner is served!

Things are moving in the right direction!  Jody’s feeding tube was placed on Monday without any complications.  He has a PEG-J tube which means it has two parts:  The “G,” which goes into his stomach (used for medications), and the “J” which goes into his jejunum, or middle portion of the small intestine.  The “J” tube is where the liquid food is going.  Since Jody is post lung transplant they are very cautious and do not want food going into his stomach because of the risk of reflux, and in turn aspiration into his lungs.  As some of you know, Cystic Fibrosis negatively effects Jody’s ability to digest food so he needs to take digestive enzymes with everything he eats in order to absorb the nutrients.  The staff here were having a difficult time getting the enzymes into his feeding tube but after about 24 hours of head scratching they finally have it figured out.  This makes me glad because now Jody can actually take in the nutrients he needs to grow stronger.

Yesterday the speech therapist stopped by the room.  She immediately commented on how much better Jody was looking since his swallowing test this past Friday.  This has been a sore subject for us.  Jody was so messed up on Friday when he took that test, and you probably remember me telling you how he had to be laid down because of feeling faint.  The therapist even mentioned that when she gave him the first cup he just kind of held it there like he didn’t even know what to do with it (I’m telling you, he was out of it).  I had been telling people that I felt like he didn’t have a fair shot at passing the test because of the way he felt but they solely blame it on the transplant and laryngal nerve damage.  The therapist seemed to think Jody had a good chance of passing if the test was repeated, based on how he looked then and now.  It felt great to finally have someone agree with me.  Convincing the doctors to order another test might be another story.  Please pray with us that they would agree to this and more importantly… that Jody would pass!  After imagining months of nutrition through a feeding tube I’m overjoyed at the slight possibility of Jody being able to eat even before leaving the hospital.  However, even if he doesn’t pass a repeat test, then we’ll no longer wonder if he could have, had the circumstances been different, and we’ll embrace the feeding tube wholeheartedly.

Today Jody had his first bronchoscopy post transplant.  This is a procedure that allows the doctors to look inside Jody’s airways and lungs.  They checked the sites of anastomosis (where Jody’s new lungs were attached), cleaned out some of the mucous and junk in there, and sent more cultures to look for viruses, bacteria, and fungus.  This is a routine procedure and Jody will continue to have these performed throughout the upcoming year.  Thankfully everything looked as it should for one week post-op.

Battle Scars Revealed

Jody’s two chest tubes are still in place.  He will be so happy when they are gone because of the pain they cause him.  Unfortunately they are still draining too much fluid.  The doctors would like to see them draining around 100 mL or less before pulling them.  Today Jody’s left tube had stopped draining all together and I firmly believed it was because of a blood clot inside that was blocking it from escaping.  No one believed me.  I told doctor after doctor, nurse after nurse, anyone who I could I told my theory.  The area where I thought the clot was located couldn’t be visualized because of tape but I knew it was there.  I was concerned about the fluid that would fill Jody’s chest, hindering his ability to breathe.  I wanted to pull my hair out because no one was taking me serious, and I felt Jody would be the one to pay for it.  I’m sure they all thought me extremely annoying, but I didn’t care.  Finally I had the NP (nurse practitioner) come to the room for one last attempt to be heard.  Instead she told me it was fine and that she understood that it was a new thing for us, but that they deal with these all the time, and I should trust them (I heard this from Dr. Shah the other day too, when Jody was so messed up and he could hardly even talk).  Just before the NP walked out of the room Jody asked for a tissue to blow his nose.  I’m sure it was God because when he did the clot that I knew was there broke free and instantly the fluid ran freely down the tube.  Before this he had 20 mL of drainage, after the nose blow he had 300 mL.  As of now he is up to 500 mL.  All of this would have been backing up inside him.  I was so afraid they would pull the tube thinking it wasn’t draining and he would end up needing to have it put back in (which is said to be a painful procedure).  I thank God for listening to me when no one else would.  No one ever acknowledged that I was right, and they don’t need to, but I hope that next time they will take me a little more serious when I express concerns to them.

In my last post I talked about Jody’s low blood pressure.  They started to wean the blood pressure medicine but are doing it much, much slower this time.  He is tolerating it well so far, and is able to get out of bed without feeling like he is going to pass out.

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100% Oxygen Saturation

Jody is walking each day and every day he goes further and further.  Today he walked two and a half laps around the nursing unit without any rest breaks (approx. 1500 feet).  I’m so proud of him!  It is still so amazing to watch him do this without any oxygen.  At one point today when he was in bed I looked at the monitor and it was reading his oxygen saturation at 100%.  That’s 1-0-0!  It can’t get any better than that!  Never in our married life have I seen his oxygen at 100%.  Naturally I had to take a picture.

Now for an update on Jody’s vision, it’s still a problem.  He continues to have blurred vision and spots, and has had this since the day of surgery (we’re not sure exactly when he first noticed it).  It’s not something that he complains about but I see him struggling to read or look at things close-up, and wish it would fix itself.  We pray that this resolves, especially since the doctors don’t seem to want to do anything about it.

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Jody’s owner’s manual

One important aspect to Jody’s recovery and being prepared for discharge is education.  When he was in the ICU and still on the vent the transplant coordinator stopped by and handed me a one-inch, three-ring binder.  Her exact words were, “Here is the owner’s manual to the rest of Jody’s life.”  Since that time we have been meeting the Jody’s assigned coordinator a little bit each day to begin learning life after transplant. Pray that we can absorb all the information being given to us so that we will be prepared come time for discharge.

Despite the fact that I have expressed some of the negative things we have experienced, we are happy with the care Jody is getting and feel very grateful to be here at this hospital.  It’s surreal to think that the waiting and wondering is over and the worst part of this is behind us.  I look forward to the progress that each new day brings, and I know that one of these days that progress will bring us home.

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