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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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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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Baby Steps

22 Sep

Today marks one week since Jody was given the gift of life; a new pair of healthy lungs, for which we’ve all been praying.  Truthfully it’s hard to believe one week has come and gone.  It has been an intense week with many highs, most notably Jody’s first breath with his new lungs, but the week had it’s fair share of low points as well.  Lately it felt like we were having more low points than high points, as if Jody’s progress had come to a halt. We continued to rejoice in these new lungs and believed things would get better.  Jody has said a few times over this past week, “I didn’t know it was going to be like this.”  “They don’t tell you all of this beforehand.”  That being said, he has no regret in his decision to have the transplant done because he realizes that what he is experiencing right now is temporary, and will get better.  He knows that down the road, when he’s enjoying life again, watching his girls grow up, and free of his sick and diseased lungs, it will be the reward for his current suffering.

In my last post I talked mostly of the swallowing study and Jody’s need for a feeding tube.  Surgery for this is scheduled for today at 3:30 pm.  Since we are in a hospital its doubtful that this will be the actual time of surgery, but keep him in your prayers around that time.

Since that last post it seems Jody’s biggest issues have been finding the balance between pain management and low blood pressure.  The doctors believe his thoracic epidural is likely the culprit for his low blood pressure.  He was weaned off of the continuous IV medication which was helping this since he was doing so well and his pressures were stable (that was when he was still able to get up and walk).  In the three days since that time Jody hasn’t really been able to get out of bed or walked because every time he tries, his blood pressure drops and he nearly passes out.

The epidural Jody had been using up to that point was not a narcotic.  It was strictly a numbing agent.  He was getting a continuous rate of this medication to keep his chest area numb, and he had a trigger button which could be pushed for additional pain relief.  He was also getting IV Tylenol and on occasion IV Dilaudid to help when his pain level jumped (usually because of coughing or movement).  The night before last, the doctor covering the floor decided to restart the Dopamine (the medication to increase his pressure) and trial turning off Jody’s epidural to see if it would help with his blood pressure which was in the 60’s again.  While I believed he needed this medication to help with is BP, I was completely and totally against the decision to turn off the epidural.  I don’t think Jody quite understood the implications of this decision.  Slowly, but surely, as the numbing agent wore off, the pain increased… and increased… and increased!  It got to the point where Jody was quietly moaning, writhing, entire body tense, tears flowing.  Again, it was awful to watch!  Again, all I could do was hold his hand, and acknowledge how beyond horrible he must have felt, even tortured.  Thankfully the nurse he had was great and could see his obvious distress.  After multiple phone calls, and probably a good 20 minutes of this (which I’m sure felt like a lifetime to Jody) that same doctor finally returned the nurses page and ordered stronger IV pain medication.  Honestly I wanted to wring his neck for the unnecessary pain he had just caused my husband.  After an hour without use of his epidural, it was turned back on.  Prior to this episode Jody hadn’t been pushing his button for extra numbing medication too often.  They doctors kept reminding him that it was programmed so he couldn’t get too much and that he could and should push the button more often. Once the epidural was turned back on we had a lot of catching up to do in the area of pain management.  During that time they said Jody pushed his button something like 132 times, desperate for relief (not to worry, he wasn’t dosed with the medication that many times because the machine knew better).  It took awhile for Jody to get comfortable again, but by about 1:30 am he finally fell asleep and I did the same.

In the morning (yesterday) I woke up to the sound of Jody talking to his nurse.  Instantly I could tell his speech was off, that he was slurring his words.  I recognized it, and figured it was medication induced but he seemed fairly comfortable.  Late morning it was decided by a team of physicians, that they would once again turn off Jody’s epidural (again with the intent of improving his blood pressure), only this time they would give him a Dilaudid PCA instead.  This is a continuous dose of narcotic into his IV and another button to push for extra doses of pain relief when he needed them.  In addition, they also gave him some volume expanders to help with his blood pressure.  As the day progressed it seemed like Jody was getting worse.  His skin was cool and clammy and he was incredibly diaphoretic (sweating buckets).  We were changing his pillow cases constantly.  Just to touch his arm my glove was coated in sweat.  He was pale and felt and looked awful.  Whenever Jody had been given this drug before (at a much lower dose) he always asked the nurses to push it really slowly because if given too fast he felt chest tightness and shortness of breath.  The problem with the PCA was that when he pushed the button it dosed rapidly and Jody felt the effects of that.  He preferred not to push his button because of that, however the pain was too unbearable not to push it.  Finally, late afternoon I had watched him suffer enough and asked his nurse to have the doctor come and evaluate him.  I knew something was not right and I suspected it was the Dilaudid PCA which was causing all of this.  Dr. Shah, the surgeon came to see Jody and while it seemed he didn’t necessarily agree with me, decided to switch him back to the Bupivacaine epidural (numbing medication), and take the narcotic PCA away.  Dr. Shah is a very smart man, and he runs a tight ship and an excellent lung transplant program, but I knew something had to change and that Jody could not stay in his current condition.  Honestly I’m thankful that I spoke up, because once Jody got back on the epidural he was able to take a nap, and when he woke up, he looked so much better.  His speech was clear, he was processing his thoughts and carrying on a normal conversation.  The sweating had mostly subsided, and he looked comfortable.  By 5:00 pm he even stood in place for a minute or two without feeling dizzy.  It was the best he looked in the last three days.  Additionally, his blood pressure was fine.

Since that time I learned that there was apparently a disagreement that morning among the doctors about stopping the epidural in the first place.  When the anesthesiologist came to see us in the evening he said he was waiting all day for the phone call to restart the epidural (He knew Jody would need it).  In young people like Jody whose nerves are fully functioning he said a PCA just isn’t effective for pain with a clam shell incision.  That was quite evident (not to mention all the negative effects of the drug mentioned above).

Jody had a decent night of sleep and looked good when he woke up today.  It strikes me as ironic to think that when he came from the ICU into the Cardiovascular Progressive Care Unit (CVPCU) he was on the Dopamine for his blood pressure and had the epidural and was doing well and making great progress.  He was weaned very fast from the Dopamine and they changed his pain management as I described and things went down hill fast.  He has come full circle and is now back on both the Dopamine and the epidural, just like when he arrived on the unit, and he is finally looking well.  He’s taking baby steps now in his recovery but even though they are small they are moving him forward, and we thank The Lord for that.  I know that they don’t want to keep him on the Dopamine for too long and it’s a scary thought to think of having to go through what we just went through so we ask that you would join us in praying that Jody would be able to hold his blood pressure when they do wean him, especially while on the epidural which he needs for pain relief.

A final positive report, Jody just got out of bed and walked about 250 feet!  Considering he could barely pivot from bed to chair over the last three days this was wonderful to see. I’m hoping this slow progress continues.

Lots of people have been asking about visits.  Because Jody is on large doses of drugs to suppress his immune system, we are limiting the number of visitors in to see him.  This past week he hasn’t really been up for visits period just because of how lousy he has been feeling.  His days are pretty busy and we also want to make sure he is getting the rest he needs.  If this changes, we will let you know.  Feel free to send him emails, texts, and phone calls and he will respond as he is able.  He is encouraged by all your kind words, cheering him on, and helping him through this journey to new life.

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Bump #1

20 Sep

Yesterday was a hard day.  Sleep the night before was difficult for Jody, then the morning brought some outside distractions and it just went downhill from there.  It seemed there was never a break from the constant flow of people in and out of the room.  Pulmonary doctors, pain doctors, infectious disease doctors, nurse practitioners, nurses, nurses aides, respiratory therapy, physical therapy, social work, transplant coordinator, housekeeping, and more.  Many of the people even came for multiple visits, and sometimes they were here all at once, fighting for Jody’s attention.  After so many hospitalizations through the years, we’ve become pretty accustomed to this, but yesterday seemed excessive.  I could tell early on that Jody was exhausted and just needed a break.  He felt completely wiped out, attributing it to the fact that he had not had anything to eat or drink since Sunday (five days prior).  He was looking forward to his repeat swallowing study and the food which would (hopefully) come after.

They took Jody down for his repeat swallowing study in the afternoon.  I wish you could see how he needs to be transported because of all the equipment attached to him that must to go along.  I felt certain that he would come back able to eat, even if it were only thick substances, like applesauce.  I was wrong.  Apparently when Jody got there, they moved him and all this tubes and equipment from his bed to a chair for him to sit for the test.  After the first attempt swallowing the liquid given to him, the speech pathologist, loudly, and almost rudely, declared, “No,” indicating it had been an instant failure.  She then said that he needed to stand for this test.  Because of the way he was feeling, it was difficult for him to do that.  He soon became light-headed and had to be laid down on the table.  After being told so unsympathetically that he had failed, and feeling such pain and exhaustion for so long, defeat took over and he had a breakdown.  I wasn’t there but was told he kept asking for me (how I wish I could have been there for him).  He came back to the room even more exhausted if that was even possible.  Shortly after that he needed to use the restroom and in there all but passed out.  When he stood up his eyes glazed over and he wasn’t responding to me.  I threw him back on the toilet, pants on, and hit the emergency bell, to which the entire floor staff responded immediately.  Back in bed, he was told he wasn’t allowed to get up anymore.  I should also mention that they have been weaning him off of the medication he was on to keep his blood pressure up.  I think the activity of the day, combined with the decreasing blood pressure medicine, and Jody’s sheer exhaustion just got the best of him.  He really needed a break from all the activity and just to be left alone so he could rest.  It’s super important for him to walk and do breathing exercises to expand his new lungs but he just couldn’t on this day.

By now you should know that Jody is a man of faith and without meaning to sound too crazy, and without going into detail it was clear that in addition to his physical body, Jody’s spirit was being attacked yesterday as well.   It was very real.  We proclaimed truth over him and cited verses from the Bible of deliverance and protection.  We know people were praying and God heard our prayers and brought Jody peace.  Please remember to pray not just for Jody’s physical body but for his spirit was well.

Finally, after about 30-45 minutes of rest yesterday afternoon Jody was told the difficult news, he was going to need to have a feeding tube surgically inserted for long-term nutrition.  You probably remember me talking about how Jody’s vagus nerve was cut, purposefully, for the transplant.  This means that Jody no longer feels the need to cough and wouldn’t know if he aspirated food or drink into his new lungs.  Think about a time when you drank something and it “Went down the wrong pipe,” as we say, and you began to cough.  Jody would not know if this happened and food or drink in his lungs could lead to an infection.  His swallowing muscles are weak and need time and therapy to strengthen them.  Until then, he will need to use a feeding tube.  This could mean no food or drink for months!!!  We’re pretty devastated about this, but understand that in the scheme of life, this is nothing but a small bump in the road.  I know that friends are planning to set up a meal schedule for us after discharge and we were (are) really looking forward to this.  This is going to be so very helpful for us, me in particular, but now I wonder the impact it will have on Jody.  It’s one thing for him to walk away and not see us eating, but what about the smells of deliciousness that will fill our home?  Will the cups of water our girls carry around bother him?  He is already thinking about the implications of this on the upcoming holiday season.  We hope that if Jody gives it his all through speech therapy, and works hard at exercises to strengthen those muscles he’ll be back to eating in a matter of weeks instead of months.  When that happens the feeding tube will be able to be removed, leaving just one small scar as a reminder of its existence.  Because Jody won’t be getting the feeding tube until Monday, they started him on PPN (Peripheral Parenteral Nutrition) in the meantime.  This is basically all the nutrition he needs mixed together in one bag and administered intravenously.  While he doesn’t get the taste of a pizza, tacos, or an Italian sub like he might like, Jody’s now getting the nutrition his body has been craving over the last five days.  I hope this will help his strength to return so he can get back on the road to recovery.

Many of you probably saw the post I made last night on our Jody Needs Lungs Facebook page asking for prayers for a restful night of sleep for Jody.  I can’t even begin to describe to you how completely and totally exhausted he was physically, emotionally, and spiritually.  Thank you to each and every one of you who took that post seriously and sent petitions to God that he would rest well.  He did!  We both did!  And he’s been sleeping a lot this morning too since it’s a weekend and the interruptions are minimal.  At some point he really does need to get moving again, but he’s still dealing with lower blood pressure and dizziness, which are hindering that.  Pray that this improves as well.  He also still has the two painful chest tubes which are draining too much fluid to be removed yet.

Since Jody is still having issues with his vision he hasn’t been able to read all the wonderful comments you left for him on my blog.  I was hoping to let him read them by himself when he’s ready to because I know they will evoke lots of emotion.  I think he needs some encouragement so I will probably start sitting beside him and reading through them aloud.  Since yesterday was so hard for him, and I think he wanted to give up, I ask that you would keep leaving comments that will uplift, encourage, and push him through this.  He truly is my hero, and even though it’s not the life I would have dreamt for us, it is an honor to walk this journey with him.

 

 

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Goodbye ICU

17 Sep

Today is post-op day two and Jody is progressing wonderfully.  I am amazed at how much has changed in such a short period of time.  I ended my last post telling you that Jody was going to have a swallowing study done before he would be granted permission to eat or drink.  In the words of the surgeon, he “Failed miserably!”  This comes as no surprise.  During the transplant itself the vagus nerve is cut and this can impact ones ability to swallow.  I’ve read that it’s quite common for people to fail their first swallowing study.  Dr. Shah wants to repeat the test on Friday but until then, no food or drink.  Jody is dreaming of an Italian sub and many of his favorite foods.  On the plus side, they are allowing him ice chips and I don’t think they have ever tasted so good.

Immediately after Jody was extubated and able to talk (more like utter a few words here and there, since he wasn’t up for much talking), we noticed his voice was very hoarse and quiet.   This could be the result of damage from the breathing tube or from the vagus nerve being cut as previously mentioned.  The doctors have been keeping a close eye on this and said they can do injections to help his voice if it doesn’t improve.  But guess what… it did!  It’s still not perfect, but it’s much better.

Yesterday morning Jody had four of his six chest tubes removed.  In case you’re wondering, chest tubes are tubes that are inserted through the skin and into the lining of the lungs to allow drainage of fluid and air.  It was great to see him lose those four tubes, but the two remaining are causing tremendous pain.  I’m going to estimate that the tubes removed were a 1/2″ in diameter and each one was inserted about 8″ inside his body.  You can imagine how having 48″ of plastic tubing inside you, moving and rubbing might be painful.  Pain management is working with Jody to ensure he is as comfortable as possible.  Even though only two tubes remain, he is moving and walking now so when the tubes inside him move, it causes intense pain and his entire body begins to shake.  It also hurts to take deep breaths which is important for him to do.  Jody looks forward to them being removed once the amount of drainage coming from them decreases.

Look at him go! (Progressive Care Unit)

Did you read that he is moving and walking?!  That’s another great improvement.  Yesterday Jody took his first walk.  It was quite the scene with about three staff members: One supporting him, one pushing his machines & pumps and another following him with a rolling chair in case he needed to sit down.  Jody walked 250 feet, taking two breaks in between.  Today he’s been up and down even more and walked about 450 feet, taking only one break.  The physical therapist says he’s making great progress.  I truly believe if it weren’t for the chest tubes he’d be going even further.  Rehab and physical therapy are going to become a big part of Jody’s recovery.  Each day he will be expected to walk more and to exercise because the harder he works the better it will be for him in the long run.  His recovery will be faster and his lungs will be stronger.  Today as Jody walked he was surrounded by a lot of the equipment he is still hooked up to but one thing was missing… the O2 tank he’s been carrying on his back for the last year.  I feel like all I can say, over and over, is “It’s amazing!”

Get well wishes from the girls (taken in the ICU).

Jody’s blood pressure, which had been really low, hanging in the 60’s is improved as well.  He is still getting IV medications to help with this, but it is staying in the low-normal range.  Yesterday he also had the Swan Ganz catheter removed (this is a catheter that is inserted through his neck and into a pulmonary artery to measure pressures in his heart).  Anyone with this type of catheter is required to be in the ICU so with it gone and with all of the progress he was making he was ready to be transferred out of the cardiovascular surgical intensive care unit.  I couldn’t wait to get him out of there. There are a lot of rules and regulations in the ICU, and I had to leave from 6-8 am & pm (four hours a day) for change of shift.  The nurses were great (for the most part), but I often feel they see little need for family involvement (including a spouse).  It’s frustrating being asked over and over to leave for minor things, especially when I felt Jody would benefit from me being there.  I think me being a nurse (which they didn’t know), and having a need to know what was happening medically with Jody, made this even harder.  So many times I had to bite my tongue and walk away graciously.  Because I couldn’t say it to them, I’ll say it to you; I know without a shadow of a doubt, their perspective would change if it was their loved one lying in that bed.  That issue aside, Jody really did receive wonderful care in the ICU and I’m so grateful.

Room with a view (Progressive Care Unit)

Jody is now in the progressive care unit where he will stay until discharge.  I’m loving it here already.  I don’t have to leave for four hours a day, there is a toilet and shower in the same room (I was going to the NICU to shower, and had to walk a long distance to use a bathroom).  The nurses seem relaxed and the overall environment is less strict.  I can even walk into his room at anytime without the secretary stopping me to “check with the nurse if it is okay.”  An added bonus… he’s got a room with a fantastic view of the Harbor.

As you can see Jody is making so much progress!  I think back to the 30 Day Prayer for Jody prayer challenge and I truly believe God heard our prayers and is honoring our requests.  I know that this doesn’t mean there won’t be bumps in the road, there will, but every smooth turn is reason for praise.  Earlier today when Jody was experiencing a significant amount of chest tube pain I told him I was sorry and that I know one day it will all be worth it.  He responded with, “It already is!”

One small area of concern (to us, not so much to the doctors) is Jody’s vision.  We are not exactly sure when it started, he noticed it yesterday, but he is having a hard time seeing.  He can’t even read a text message on his phone held right in front of his face.  Dr. Shah thought it was blood pressure related, which has improved but his vision has not.  Now he is thinking it is epidural related.  It could also be related to one of the new meds he’s on.  The plan for now is to wait until the epidural is removed and if it doesn’t improve after that they will consult ophthalmology.  Prayers appreciated.

There is one more random piece of information I would like to include even though it doesn’t really ‘fit’ in this post.  I find it interesting and would like to be able to remember it so I need to include it.  This relates to a post I wrote back in March of 2013.  Jody was having major hemoptysis (bleeding from his lungs) and had an extensive pulmonary embolization.  If you ‘followed’ me back then you might remember that in order to stop the bleeding they injected micro beads into his bronchial arteries which acted as clotting agents.  I clearly remember being told that they had to use more clotting agents on Jody than they had ever (in the history of Hopkins) used on a patient.  You can read more about that by clicking here.  Anyway, fast forward to the present.  Dr. Shah told us that when he made the cuts to remove Jody’s old lungs the clotting agents came spilling out.  He made it sound as if they were flowing everywhere and all over the place (probably not literally, but how he made it sound).  When I told him about how much of the beads they had to use to stop the bleeding, he said he was not at all surprised to hear that based on what he saw.  For some reason I found this tidbit oddly fascinating to know.

Today is September 17th, 2014.  On September 17th, 2013, one year ago to the day, we were told the hard truth… that Jody needed a lung transplant.  We weren’t prepared for those words, and it took some time accepting that fact.  Today we sit here, new lungs installed, and we rejoice in the miracle of it.  This past year has been rough, but the doctors were right, Jody needed lungs.  And now he’s got them!

 

*** It’s probably not customary to send flowers to a man in the hospital, but just to be on the safe side, if you were thinking of doing so, don’t!  Jody is not allowed to be around them at this time.***

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The Transplant Story

16 Sep

Before I begin I want to thank you for all the calls, texts, comments, messages, etc.  I wish I could respond to each of them, but it’s just been too busy here in the ICU.  I should also note that I am not allowed to talk on my cell phone in Jody’s room, and that is where I have been spending my time (there is no land line to his room either).  I am so touched by your encouragement and I know Jody will be too.  I can’t wait for him to read all the comments you left on my blog, thank you for doing so.  After a ‘decent’ night of sleep, I’m ready to put Jody’s transplant story on paper (technically a computer screen).  To make things easier on myself and to help Jody & I remember the details, I’ll put the events in a timeline.

Sunday, Sept. 14th, 2014

3:35 pm: Received phone call from JH transplant coordinator of lungs for Jody.  Told to leave ASAP.

4:20 pm:  Left our house (needed to wait for someone to come take our daughters).

5:42 pm:  Arrived at JHH after an uneventful drive.

6:15 pm:  Taken to the ICU where he would remain for his pre-op period.  We were told that surgery was scheduled for 9 pm.  Here they started IV’s, drew labs, did a few other tests, and had him do his pre-op scrub down.

8:30 pm:  Anesthesia consents were signed.

9:00 pm:  Surgery consents were signed.

9:35 pm:  Left the ICU for the OR

11:24 pm:  Surgery began.  The time between when he left for the OR and when surgery actually started was the time it took for anesthesia to place all the lines/tubes that he would need for this procedure (breathing tube, central lines, A-line, femoral line, etc.).

Monday, Sept. 15th, 2014

12:16 am:  Jody’s new lungs arrived.

12:39 am:  Left lung was being put in.

2:25 am:  Both lungs were officially in (JODY GOT LUNGS)!!!

3:00 am:  Dr. Shah, the transplant surgeon came out to talk to me and tell me how everything went, which was well.

3:35 am:  Transferred out of the OR and into the ICU (exactly 12 hrs after receiving the call from home).

5:30 am: I returned to the ICU to see Jody for the first time post-operatively.

When we got the call at home I wasn’t sure what to think, especially after the two previous calls which ended in dry runs (check out those posts if you haven’t read them, by clicking here & here).  I honestly wasn’t as willing to believe that this was the real deal as I had been during the previous run.  Jody, on the other hand, somehow knew this would be the one, and he was much more emotional about it, compared to the previous dry runs.

Once the ball got rolling, the timeline of events seemed to progress rather quickly.  You might think I’m crazy for this, but I purposefully chose to be by myself for the procedure.  I didn’t know how I would react or respond and I didn’t want to feel like I needed to be strong for others or that I was entertaining people while I waited.  I appreciated our family’s understanding of this.  Since transplant happened in the middle of the night on a Sunday night, I had the entire waiting room to myself.  The lights were dimmed, it was quiet and peaceful, it was just me, and it was great!  Truthfully, I felt very calm.  I knew that we were being covered in prayer by the few people who knew Jody had been called.  I knew that Jody was in good hands with Dr. Shah and even better in the hands of The Great Physician Himself.

For me, the most emotional time up to this point was after Jody left for the OR.  I walked to the parking garage to drop off and pick up some things.  While there I heard the incoming sound of the JH chopper.  Instantly I knew it was carrying Jody’s lungs and I needed to see it!  I went running, bags and things falling all over the garage, which thankfully wasn’t busy.  As I watched the chopper land, and heard the loud roar of the engine & propellers, I became overcome with emotion.  Suddenly I felt such intense grief for a family who, while we rejoice, are gathering to mourn the suddenly loss of a loved one (brings tears to my eyes even as I type this).  How do you thank someone for a gift such as this?  My feelings of grief were followed by joy, hope, fear, and nervousness, all rolled into one.  I had my moment of tears, but as the chopper lifted back up minutes later, I wiped my tears, and carried on.  In case you paid special attention to the timeline of events, you may have noticed that it turns out I was wrong about that chopper carrying Jody’s lungs.  They didn’t arrive until 12:16 am!  Either way, I believe God used that moment to help me feel a small fraction of what the donor family was feeling.  Please, please, as you pray for Jody and his recovery, remember this giving and grieving family in your prayers too.  It’s unbearable for me to think of what would have happened to Jody if new lungs never came and it hurts to know that another family is experiencing this pain in their hearts.

The thing I was most nervous about following transplant was walking back to see Jody for the first time.  I felt pretty prepared for all the equipment, but how do you prepare yourself to see a loved one lying still and helpless and on a breathing machine?  I wasn’t prepared for what I saw.  The gobs of lines, tubes, and machines had no effect on me.  It was his face.  I saw him from the door as I prepped to go in (donning gown, gloves and mask), and I felt like I’d just had the wind knocked out of me.  He looked, putting it bluntly, dead.  The color of his skin, the stillness of his body.  My first thought was, “He looks like he’s lying in a coffin!”  It took courage to bring myself to walk into his room.  As I stood there, I couldn’t get past that thought, and I began to feel queasy so I grabbed a chair to sit down beside him.  I must have done a good job of hiding my shock at how he looked because it went completely unnoticed by the nurse taking care of him (who was wonderful by the way).  Honestly, it probably took a good hour until I could see past the ‘deadness’ in his face and skin, but thankfully, eventually I could.

At this point in time Jody was completely and totally sedated.  In fact, he still had paralytic agents in his body from surgery so he literally could not move.  For many hours he laid there completely still and unaware of anything going on around him.  Jody has what is termed a ‘clam shell’ incision, one that goes completely across his chest horizontally, instead of vertically as seen in heart surgery.  The clam shell incision is known for being especially painful.  For this reason, late morning yesterday they inserted an epidural catheter, much like women use for labor, only this numbs his upper chest.  Once the catheter was in and Jody was receiving pain mediation to his incision they started to wake him.  In order to start using those new lungs, he needed to be awake.  It was around 11:30 am when they lowered the ventilator settings to allow Jody to do most of the work of breathing, and breathing he did.  It was awesome!  The unpleasant thing for him was being awake, tied down, and having a tube down his throat.  He had been warned pre-operatively of the need to stay calm and not fight because it would only make it worse for him, and make the gagging sensation worse as well.  Knowing and doing are two very different things.  Throughout the day, this became the hardest thing to watch.  He was so uncomfortable with that tube and all we could do was tell him over and over that he needs to relax and stay calm.  I held his hand and rubbed his hair, doing the best I could to calm him down.  It was miserable.  There were times he looked at me like, “You have NO idea what this is like, I can’t do this.”  I could see his frustration and how desperately he wanted that tube out… but his lungs weren’t ready yet.  I truly cannot put into words how awful this part was for me.  Over and over I wanted to weep and say, “I’m so so sorry you have to go through this (again the tears fill as I type).”  I realized that this gift of life comes at a huge price for both the donor and the recipient.  It’s no piece of cake!

From a breathing stand point Jody was doing great, that was never an issue, thankfully.  Initially Dr. Shah told me that they planned to remove the breathing tube today, and I wondered how we were going to make it until then.  Jody’s nurse called me his “Professional Calmer Downer,”  because he was much calmer when he could feel my touch.  But how could I sit at his bedside all night (after already losing 24 hrs of sleep), and how could he endure it?  They began testing Jody to see if he would be able to breathe completely on his own if they pulled the tube earlier than planned, and he passed with flying colors!  At 4:35 pm they extubated him (removed the breathing tube), and it was instant relief for Jody.  Do you want to know the first words he managed to faintly whisper?   Of all the things he could have said, like, “I wanted you to stop telling me to relax,” or of all the things he could have complained about, such as pain, he instead chose three little yet powerful words, “I love you!”   This speaks to his character.

Jody had essentially been breathing on his own on the vent, but with the tube gone, it actually looked like he was breathing on his own.  They put him on 2L of oxygen, not because he needed it but “just to make us (the team) feel better.”  Remember, coming into the hospital he was on 6L of continuous O2 and was still short of breath.  By 5:00 pm (only 25 minutes later) they removed the oxygen all together and he was breathing 100% on his own.  It was amazing!  His pulse ox started in the high 80’s and slowly increased to around 94-95% which is where it’s hanging right now.  Next to the birth of my children, this was the most miraculous thing I’d ever seen!  Someone else’s lungs, in him, breathing, on their own, just as they had done before.  It worked!!!  Jody no longer has scarred and failing lungs in him, but instead, strong, healthy ones!  To see him off oxygen was… can’t even find the right word, only more tears.  He has continued to breathe free of any assistance, and it’s breath-taking for me.

Jody is doing amazingly well, but the journey is far from over.  He has low blood pressure which they are working to improve.  They want to keep his lungs dry so they need to avoid giving him fluids.  Instead he’s on meds to improve his pressure and also got a few blood transfusions since surgery which has helped. One thing that is really bothering Jody is his dry mouth.  He hasn’t been allowed any liquids, including ice chips because of the risk of aspiration into his new lungs.  He will undergo a swallowing study this afternoon which will determine if he will be allowed to eat or drink.  After being given medications which cause dry mouth, and his mouth hanging open throughout surgery and the entire time he had the breathing tube, I can’t imagine how parched he must feel.  Please pray that God would take this feeling away from him and/or that he would pass his swallowing test when they are done.

There is so much more I could share with you but I need to stop.  I’m glad I could finally get this out to you.  Today is a busy day for Jody and I will continue to update you when I can.  Praising God for answered prayers, may He receive all the credit for Jody’s incredible progress!

I'm Breathing!

 

 

 

 

 

 

 

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