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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.***

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.

4:15 pm:  Left our house (needed to wait for someone to come take our daughters).

5:45 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 planed 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!

 

 

 

 

 

 

 

Jody Got Lungs!

15 Sep

It is with a heart full of awe and gratitude that I announce:

Jody got lungs

Third time was the charm!  Jody is out of the OR and now in the cardiovascular surgical intensive care unit (CVSICU), where he arrived at roughly 0345 this morning.  Surgery was a success, but he is far from ‘out of the woods.’  He is currently sedated and a ventilator is doing all the work of breathing for him while his new lungs rest.  There is hardly a square inch on his body that is not hooked up to a line, tube, or machine.  They are, at this very moment, placing a thoracic epidural which will help to keep his pain under control and in turn improve his breathing (once he is doing it on his own).  I am assured by the nursing team that Jody is right on target with where he needs to be in his recovery process.  There is a long road ahead, especially for Jody.  We covet your prayers.

I realize that I have not given you much detail; it has been a sleepless night and a busy morning.  I don’t feel that I have the time (or energy) yet to write a proper post, but wanted to get something brief out to you.  I do have one favor to ask.  I would LOVE if you would leave comments here on the blog (instead of, or in addition to, Facebook).  Blog comments can be printed out and cherished forever as we remember this journey in the years to come.  I think it would be awesome for you to use this time to write something specifically to Jody so that when he wakes up he will be overwhelmed by the care and kindness of the people around him, both known and unknown.  Imagine waking up to lots of lovin’!  At his point, you know more than he does about what’s happening.  Encourage him and show him your support.  When I look at him now I am saddened that he has to go through all of this, but overwhelmed by the strength and fight he has in him.  Let him know how he inspires you!  Ready. Set. Go…

 

Dry Run #2

26 Jun

This isn’t exactly the blog post I was planning to write this morning.  I wholeheartedly expected to announce today that Jody got his new lungs.  Instead I’m telling you the story of another dry run.  In case you missed the last one, here’s the story of our first dry run, reading that one will help you understand this one a little better.

Yesterday, June 25th, marked exactly three months that Jody has been active on the national lung transplant waiting list.  When that happened, I remember his doctor speculating he would be called within three to six months of being made active.  He was called after only one month of being listed, and now again at three months.  Here’s the story of our second “dry run”.

Last evening at 6:45 pm, our phone rang.  Every time this happens I find myself holding my breath wondering if it’s “the call,” and time to jump into action.  Usually it’s not, but this time it was!  When Jody answered, it was a transplant coordinator from Johns Hopkins.  She called to say that Dr. Shah (the surgeon who will be performing Jody’s transplant operation), wanted us to know that there was a potential donor.  We were told not to come in yet, but to begin preparing just in case.  She promised to call back either way.  I began to start packing things for our girls, tidying up around the house, and Jody hopped in the shower (because who knows how long after transplant it would be until he could shower again).  At 8:00 pm, the transplant coordinator called back to say, “It’s a go!”  In other words, this is it, this donor is for you (Jody)!  She told us that we didn’t need to be there until midnight, and that surgery would be tentatively scheduled for 4 am 6/26.

You might be wondering about this big gap in time so I’ll explain my understanding of the events (and this may not be 100% accurate because often information is purposefully left out, and we have to read between the lines).  Between 6:45 & 8:00 pm, I believe the surgeon and his team got word of the possible donor and began reviewing this persons medical records to know if “on paper” the donor was a perfect match.  We did learn that the donor was 40 years old and that his/her lungs were not considered high-risk lungs.  Once this donor was approved on paper, we received the second call, telling us to be at the hospital in four hours.

I would like to pause here to clear-up a common misconception.  People often choose NOT to become organ donors because they fear they will be taken off life support prematurely so that their organs can be donated.  This is just plain false, and quite honestly an uneducated argument!  When tragedy strikes, and people experience brain death, it’s only a matter of time until their organs begin to shut down and death is imminent.  In the case of Jody’s potential donor last night, the family would have been told that their loved one was not going to survive whatever it was that caused this tragedy, and that death would be soon.  They were most likely given the option to wait it out until the end, in which case the organs would have been unusable (and would probably have been a matter of hours to a few days), or to make the call to stop life support, thereby avoiding the death of their loved ones valuable and viable organs.  They would have been given the option to donate their loved ones organs so that hope could come from their tragedy.  Let me be blunt, sadly, organ donation or not, this person would not have survived their injuries.  People are NOT taken off life support for their organs if there is ANY chance of survival.  Please make sure you are properly educated before you make the decision not to become an organ donor.  In this case (and any case of organ donation), I’m thankful the family made the selfless decision to give life (because even though it didn’t work out for Jody, I’m sure others were blessed with this persons life-giving, life-changing organs).  This family has been heavy on my heart, and I am keeping them in prayer because even though they are giving life to others, they are grieving a terrible loss of their own.

Okay, now that I have stepped down from my organ donation soap box, I’ll return to our story.  Up until this point I believe the donor was being kept alive and on life support.  Once it was determined on paper that the lungs would work, and we were notified, a transplant surgeon (not Dr. Shah himself), and a cardiothoracic fellow (doctor) flew out to wait for and personally evaluate the lungs once they were harvested.  This sounds fast and simple, but it takes time and patience.

Final goodbyes before transplant

While all of this was occurring, I was so thankful for the time we had to prepare.  This was exactly what I (and probably some of you), had prayed for.  We had time to pause and think without rushing around like chicken with our heads cut off.  By 9:10 pm, my Mom had come and gone with our girls, but not before we took a family picture.  At 10:05 pm we hopped in our van to head to JHH.  Ironically, when Jody started the ignition, the first words I heard playing on the radio were, “Tonight’s the night.” Words from the Toby Mac song, City On Our Knees.  I couldn’t help but wonder if that was a sign.  Apart from the pouring rain, our drive to Hopkins was seamless, the complete opposite of our last stress-filled dry run.  Because it was later at night, we hit no traffic, it was great!  We arrived at JHH at 11:35 pm.

Since the admitting office was closed, upon arrival we were instructed to go to 10W (the cardio-thoracic post-surgical progressive care unit).  This is also the unit to which Jody will be transferred once he is moved out of the ICU following transplant.  Once there he was told he would have blood work done, an IV started, an EKG, and be placed on a cardiac monitor.  At 1 am a cardiothoracic resident came in to review the procedure, answer questions, and have Jody sign consents for surgery.  The team of physicians who had flown out to get the lungs were not back yet, and surgery was still tentatively scheduled for 4 am.  At that point we knew this could still turn into a dry run.  In fact, we were told that Jody may even be taken to surgery, put to sleep, only to wake up and be told the lungs were not good, and that the surgery never happened (imagine the disappointment in that).  Despite that risk, we believed that this was the real deal.  We felt relaxed and actually dimmed the lights in the room in an attempt to get bits and pieces of sleep.  At 2 am the same resident who had signed consents with us opened the door to Jody’s room and instantly we knew.  His face said it all, no words were needed, but he spoke something like, “I’m really sorry guys, we can’t use the lungs.  There were nodules on them and Dr. Shah doesn’t feel comfortable using them.  It’s not worth the risk.  You are free to sleep here or to go home, I’m really sorry.”  Unlike last time I was stunned.

Everything about this dry run was perfect, exactly what we had hoped and prayed for.  In fact on the way home (at 2:15 am) we were debriefing and Jody asked me what I would do differently the next time, and I couldn’t think of anything.  It was fabulous to have the advanced warning and so much time to prepare.  The drive was uneventful.  Since it was late at night the hospital appeared empty and quiet.  One word to describe this entire experience is calm.  We were prepared and relaxed, unrushed, and unlike our last dry run, everything flowed smoothly and calmly.  Even the timing seemed right, my FMLA at work has now been renewed for another year, and this would allow Jody to be home for our oldest daughters 6th birthday in August, and first day of Kindergarten the day after that.  I guess because it felt right, I believed it was right.  But I was wrong.  After our last dry run I was relived, I just wasn’t ready, this time I felt genuinely disappointed, Jody too.  We left bummed and emotionally drained.  This time when we got in our van, the first words of the song we heard playing on the radio were, “And I’ll praise You in this storm…” (Praise You in This Storm, by Casting Crowns).  I had to stop and say, God I don’t understand it, I’m disappointed, but I trust You and your timing, so I’ll praise You regardless.

We’ve now experienced both a bad and good “dry run.”  Who knows what the next call will be like.  Hopefully it won’t end in me writing a Dry Run #3 blog post, but rather in my making that long-awaited announcement that Jody did indeed get his new lungs.  Until then, continue to pray that the next call will not hold the stress and craziness of dry run #1, but instead would be covered in the peace and calmness of dry run #2.

 

The Gift of Prayer

30 May

Prayer is a gift-AI believe that prayer works.  That it’s powerful and effective. Prayers may not always be answered the way we would like, if at all, but they will always bring us closer to The One who has the power to change a situation.  With this understanding, I find myself praying often for Jody’s upcoming transplant.

There are many aspects of the journey we are about to take that I desire to cover in prayer, and sometimes it feels overwhelming.  Recently I had the idea to write down all the prayer requests I could think of and pray for one specific area each day.  I know that some of you are faithful in keeping us in your prayers, so the more I thought of it, I decided to share my prayer list with you.  Why not turn it into a prayer challenge?  The month of June is just around the corner, which seems like the perfect time to start.  Will you join me in a 30 day “Prayer for Jody” challenge?  Below I have listed a prayer focus (request) for each day of the upcoming month.  Please consider supporting Jody and my family by giving us the gift of prayer each day for the month of June.  It’s free, easy, and perhaps God will use this time to speak to you about an area of your life as well.

Prayer for Jody Challenge

If you accept this challenge, hit the “print” button at the bottom of the post for a print-out which can be hung in a place where you will see it often (the refrigerator, your desk, your car, etc.).  One can never have too many people praying for them so please share this post with the prayer warriors in your life, and ask them to join us in covering all aspects of Jody’s transplant in prayer.  Make a difference, and give the gift of prayer!   

June 1:

Health Today – Pray for Jody’s current health as he awaits transplant. Pray against any infections that would cause a rapid deterioration before transplant. Jody’s doctors believe that in his current state it wouldn’t take much for him to go downhill fast. Additionally, if he needed to be on a ventilator for an extended period of time prior to transplant, it would disqualify him from being able to have the operation at all. The healthier he is going into his transplant, the better his recovery will be, so pray for protection over his lungs and overall health until the time comes.

June 2:

The Donor – Pray for Jody’s donor who is, at present, living and breathing. Pray that he/she would know Jesus as their personal Savior & Friend. Pray that they would make the most of their time left, not taking a moment for granted. Also remember to include prayers for the donor’s family as they will be forced to make the decision of whether or not to give the gift of life.  This family will also need your prayers as they grieve the very sad, and unexpected loss of a loved one.

June 3:

The Call – Pray that we will be ready when Jody gets the call for his transplant. Pray that we won’t be too far from home and that we’ll have time to grab a few last-minute items (things that couldn’t be packed ahead of time). Pray that the drive will be uneventful and that we won’t be held up in traffic like before. Pray also for a supernatural peace/calmness when the call comes.

June 4:

Emotions – This journey has, and will continue to be an emotional roller coaster. Pray against negative thoughts and feelings, such as fear, hopelessness, doubt, worry, anxiety, offense, etc. Instead, pray that we would be filled with peace, strength, faith, hope, trust, courage, etc.

June 5:

Fundraising Efforts – While Jody and I are primarily focused on his health (and will continue to be post-transplant), there is a team of people working behind the scenes to help us with fundraising.  Jody’s transplant, recovery, and post-op medications (just to name a few) will be a financial burden on us.  This team of volunteers is working to eliminate that burden by fundraising on our behalf. While this is a huge blessing to us, it puts a lot of work & responsibility on them. Pray that people would respond to their call for help and support, particularly with planning an upcoming auction in the fall. Pray that the team would feel encouraged and that their efforts would be rewarded. Pray also that people would continue to give financially so we can reach our fundraising goal set by Jody’s transplant social worker.  Finally, pray blessings over those who have already offered time, services, and/or financial help.

June 6:

Pre-Op – Pray for the period of time between our arrival at Hopkins and when Jody is taken to the operating room.  He will undergo a few tests during this time.  Pray that anxiety would be minimal and courage and peace would be plenty.

June 7:

Our Families – Pray for our families, particularly our Moms, whose primary role in all of this will be to take care of our two daughters. It’s one thing for a Grandparent to babysit here and there, but it’s another thing for them to care for young, energetic kids for weeks on end with no break. Pray for strength, endurance, and patience too. Also pray blessings on them as they give of themselves in such a big way to help us through this time in our lives.

June 8:

The Surgery – Pray for the surgeon, anesthesiologist and other team members who will be caring for Jody during the actual transplant. Pray that Jody’s old lungs will tolerate the surgery so that he won’t need to be placed on a heart/lung machine during the procedure. Pray that God would guide the surgeon’s hands, preventing any errors from occurring. Pray that the surgery would be uneventful (progressing as smoothly as planned), uncomplicated, and a complete success. Pray that God would send His angels to protect and comfort Jody during this big operation. Also pray for me as I anxiously await updates and for the time when I see him for the first time post-op (he will be sedated and on a ventilator).

June 9:

Our Girls – Disease impacts an entire family, not just one person, and our girls are no different. Tabitha, age 5, misses how her Daddy used to be able to run around with her, and take her and her sister to fun places, like Dutch Wonderland. Words like oxygen, germs, infection, lungs, sick, sanitizer, hospital, etc., are an every-day part of her speech and play. She has a very basic understanding of what is happening with Jody. Piper, our 3 year-old, really has very little understanding if at all. Our girls are accustomed to Jody being around nearly 24/7 so they notice and miss him when he’s ill or hospitalized. Transplant separation could range from weeks to months so pray for our girls as they experience a temporary change to the life they’ve always known (since both Jody and I will be away much of the time and they will be staying with grandparents). Pray for safety over them while we are separated, and that they come out of this experience emotionally strong, whatever the outcome.

June 10:

Against Rejection – Pray that Jody’s body would accept the lungs from his donor as if they were his own. Pray for a perfect match! Pray against rejection. Pray against the many unpleasant side effects of high doses of anti-rejection drugs.

June 11:

Recovery – Pray for Jody as he begins the long road to recovery. Pray for minimal pain, and few (if any) complications.  Pray that I will be an effective cheerleader, encouraging him on in his recovery.

June 12:

Tiffany – Please pray for me as my role of caregiver takes on a whole new level. As Jody recovers I will be balancing both caregiving and life outside of the hospital (work, kids, home responsibilities, bills, dealing with insurance companies, etc…). I know this will be a busy and stressful time for me so pray for strength to make it through. Please also pray for my health both now and then. One fear I have is that I will be sick or have a cold when Jody gets his transplant. Even the slightest cold would prevent me from being able to be by his side, and this would be devastating for me. After Jody’s transplant, and for as long as he is in the hospital (I think) I will need to wear a plastic gown, gloves and mask (including to sleep, if I am even allowed to stay overnight with him). This can be quite hot and annoying if I’m honest. Pray that this “garb” would not faze me and that I would be comfortable at Jody’s bedside.

June 13:

Help – This upcoming lung transplant feels like a big, all-consuming mountain to climb. This mountain may not seem quite as large if we have people standing by us, cheering us on, and helping us along the way. Pray that God would provide those supporters when we need them the most. Pray also that when we are unable, our physical/practical needs will be met as well. Pray that we can be humble enough to accept the help when it is offered. Finally, pray blessings on those who sacrificially give of themselves by offering help and support.

June 14:

The Doctors – Jody will have a team of physicians managing his care. Pray wisdom on them to make the right decisions and for answers when they question the right thing to do. Pray for doctors who are kind, thorough, and willing to explain and teach Jody’s plan of care on a level we can understand.

June 15:

Positivity – Throughout this experience there will most likely be set-backs. Pray that we can remain positive in our thinking, keeping our eye on the end goal.

June 16:

Breathing – Pray that Jody’s time on a ventilator after surgery will be short and that there are no complications that would hinder his ability to breathe on his own. Pray that his lung function will steadily climb so that he can be off oxygen support and breathing easily and comfortably on his own.

June 17:

The Nurses – Nurses can make or break a hospital experience! Pray for the nurses who will be caring for Jody throughout his hospital stay. Pray that they are top-notch, great at what they do, but also warm and friendly. I remember thinking from past ICU hospitalizations that the critical care nurses tended to be much less warm and fuzzy (compared to regular med-surg nurses), even seeming annoyed when questioned. Pray against this, and that the nurses Jody is assigned will be great teachers, and will see him as the person (husband, father, son, brother, friend) that he is, and not just another patient. Lastly, pray that I would connect with Jody’s nursing team as well.

June 18:

Chest Tubes – Following his transplant, Jody will have four chest tubes which will remain in place to allow for drainage from his lungs. I have heard that they can be quite uncomfortable and even painful. I’ve also read stories of people needing to stay in the hospital for months after transplant, waiting for the tubes to stop draining so they can be pulled. Chest tubes can also get “clogged” resulting in a back-up of fluid, causing shortness of breath. Please pray against any complications related to these tubes.

June 19:

Rehab – After transplant an important aspect to Jody’s recovery will be pulmonary rehab (guided exercise). Pray for strength and determination to “get moving.” Pray for minimal pain during these exercise sessions. Pray for a connection with the therapists with whom he will be spending a lot of time.

June 20:

Tiffany’s Job – Pray that my managers will be understanding of my situation, and willing to work with me. We do not have a lot of flexibility with our schedules at work (and they are made up eight weeks in advance). Pray that it would work out more often than not that Jody’s appointments fall on my days off (I work three days a week and do not have a set schedule). Pray that if I need off on a day that I am scheduled to work, I would be able to find someone willing to make a switch with me. Pray that I do not run out of FMLA time throughout the next year. Finally, pray for my emotions when I must work. Leaving Jody’s (hospital) bedside to go to work is one of the hardest things I do, and I know it will be even harder after his transplant. Pray that I can stay positive and focused on the task at hand, despite everything happening in my life outside of work.

June 21:

Rest – It’s hard to get quality sleep in a hospital when interruptions are frequent. Pray that Jody would be comfortable and able to get the sleep he needs to wake up feeling well rested.

June 22:

Unnecessary stress – As we focus on Jody and his recovery after transplant, pray that our lives outside of the hospital will be guarded. Pray against things breaking down at home or with our vehicles. Pray against any of us getting sick. I can dream up all kinds of scenarios of things, completely unrelated to transplant, that could go wrong (the dog gets sick, a pipe breaks, a tooth cracks, the girls get sick, etc.). This would only add unnecessary stress. Pray that life apart from transplant will run as smoothly as possible during this intense time.

June 23:

Miracle – Receiving a new set of lungs will be, in and of itself, a miracle in Jody’s life. Right now, without this gift of life, his life expectancy is 1-2 years. As before, pray that Jody’s body would miraculously accept these new lungs as if they were his own. Pray that God would use this surgery to bring the earthly healing we’ve been asking for. Pray for a miracle!

June 24:

Germs – Being immunosuppressed post-transplant, germs, viruses and bacteria could be a real threat to Jody’s life. Frankly I am terrified of how we will keep Jody healthy when we have preschool/school age children who bring illness into our home. Even now it puts me in freak-out mode when I know they have a cold, and risk sharing it with Jody. Sadly, I imagine this will only get worse. Please pray for supernatural protection from the germs that will surround our family and Jody in particular, following transplant. Pray also for protection over him this upcoming cold/flu season.

June 25:

Safe Travels – Post transplant Hopkins will become a second home for us. In choosing not to relocate to Baltimore (as was first suggested), we will be making many trips back and forth between our house and the hospital. This 82 mile (one way) drive on a busy highway is sure to provide ample opportunity for something to go wrong. Once already during this trip our vehicle was damaged because of accident debris left on the road. This is one stress we hope to avoid.  Please pray for safety while spending so much time on the road traveling to and from hospital visits and doctors appointments.

June 26:

Learning – This transplant and recovery will be unlike anything we have ever experienced. There will be a huge learning curve as we prepare to bring Jody home. Pray that we absorb and understand the education we are given so that we can follow through with his care at home properly.

June 27:

Against Statistics – If you’ve been reading my blog long you know that lung transplants are not known to have the best long-term outcomes. They are done more to improve quality of life, and not necessarily longevity. Fifty percent of patients do not live five years out of a lung transplant, and only 38% of people live 10 years out. In 10 years our daughters will be 13 & 15, and still very much in need of their father (perhaps at that age even more so than ever before). These statistics are very hard to accept, and wear on me emotionally. I often find it easier to believe the statistics than that God could have a different plan. Pray against this. Pray also that God’s plan for Jody’s life would be to beat the odds stacked against him, and to watch his girls become grown women.

June 28:

Acceptance – There are no guarantees in life. While we hope this transplant will be long-lasting, we understand that God may have a different plan. Pray that we can accept The Lords will for our life (whatever it may be) and trust in Him always.

June 29:

Jesus – Pray that throughout this journey we see the power, love, and goodness of God, especially in times of doubt. Pray for opportunities to share the love of Jesus with the people we meet. Pray that our faith would be strong. Pray that above all, God would receive all the glory.

June 30:

You choose – Is there an aspect of this journey that you feel compelled to pray about? Perhaps something that I’ve not considered? Was there an area this month that God laid on your heart to continue praying for?  If so, take it to The Lord on our behalf.

Afterthoughts:

To those of you who completed this challenge, THANK YOU!  It’s reassuring to know that Heaven was flooded with prayers for the success of Jody’s transplant.  When the actual time comes, please continue to lift us up in prayer as we begin to climb the mountain set before us.  We’re looking forward to “the sweet life” when we get to the other side, and we know that it will be your prayers helping us, encouraging us, and moving us forward on the journey.

The Calm Before the Storm

11 May

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

Dr. Shah (Jody’s transplant surgeon)

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

 

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

Dry Run

2 May

Yesterday was an emotional roller coaster.  It was 3 o’clock in the afternoon, we were in Virginia, four hours from home, taking afternoon naps.  The phone rang, “Mr. S., this is R., a transplant coordinator for Johns Hopkins,  I want to let you know that we have a donor for you.”  “What?!  You mean you have a set of lungs?,” questioned Jody in confused astonishment.  “Yes, how soon can you get here?”  And so began the madness.

On paper we were three hours from Hopkins.  The transplant coordinator relayed this information to the surgeon who said it was okay, and to come as soon as we could.  We quickly explained to our girls what was happening and why we needed to leave ASAP (we had discussed this with them before when we talked about transplant).  We then grabbed a few things on the way out, and left in a hurry.  It was 3:15 pm.  We were in complete shock!  Jody had only been active on the list for a little over a month, and we never anticipated getting “the call” so soon.  We had also been told that more often than not the call comes in the middle of the night, so we never even gave it much thought that Jody could be called for transplant in the middle of the afternoon.  We also envisioned being home (or near home) when he was called so it would be easy to have family come to our house to watch our girls so we could go.  Instead, being four hours from home there was no one to call to come over.  The girls had to go with us and we had to coordinate someone to meet us at Hopkins to take them home (they would not be allowed in with us because they are too young).  I feared Jody going to the operating room while I sat in the parking garage with our girls, waiting for someone to get there to take them.

Rush hour traffic

Rush hour traffic

The drive to Hopkins was stressful in that we hit rush hour traffic (we couldn’t have planned a worse time to get the call if we tried).  Every half hour or so we checked in with the transplant coordinator, updating her with our location and traffic conditions.  She would then text the surgeon with that information, but we were always instructed to, “Just keep coming, but drive safely.” The closer we got to Baltimore the worse the traffic got.  We were bumper to bumper, going 10-15 mph.  We joked about creating our own Hollywood car scene where we drive recklessly up the shoulder, in and out of traffic,  drive up a few cars to jump over a few more, etc. (you’ve all seen those movies, you know what I’m talking about, right?). Obviously this wasn’t a realistic option for us.  It felt like everyone around us should have just known, that we were in a hurry, and that Jody was on his way to the hospital for a lung transplant.  At one point I even thought about creating a sign to hold up and fill the other drivers in on our need to move, and move quickly.  As traffic continued to crawl, Hopkins actually mentioned the possibility of sending us a police escort and/or the chopper.  Suddenly I envisioned myself saying goodbye to Jody in a median along the side of the road, with traffic rushing by, as he climbs up into the chopper and is flown off to the hospital and taken to surgery.  I couldn’t have dreamt this up if I tried; it really was beginning to sound like the plot of a good Hollywood movie.

Taking a breather after our "dry run."

Taking a breather after our “dry run.”

Thankfully, the surgeon always felt our arrival time was doable so additional help to get us there fast was unnecessary.  We finally arrived at Hopkins at 7:30 pm, and the hospital never looked so good.  I dropped Jody off at the main entrance and drove our minivan to the garage to park and hand the girls off to my Mom who thankfully was ready and waiting.  Rather frantically I threw some things in a bag, and headed in to meet Jody wherever he was taken.  I was just about to cross the bridge from the parking garage into the hospital when my phone rang.  It was Jody.  The (donor) lungs were no good.  This was the possible “dry run” they had warned us about.  Both disappointment and relief filled me.  Fortunately my Mom hadn’t left with our girls yet so we all met Jody near the entrance and sat down for a few minutes to de-stress and process the information.

It’s hard to understand why this dry run had to happen, but it did prepare us for when we get the call next time.  I’m grateful to a picky surgeon who won’t allow Jody to accept less than the best lungs for him.  And to speak to the quality of physicians we are dealing with, he (the surgeon) offered to pay for our gas and buy us supper.

Clearly, this was not the donor, or the lungs for Jody.  Regardless, I hold this family in my prayers as they have experienced the painful loss of a loved one.  I also continue to pray for Jody’s actual donor and ask you to do the same.  Please also pray that the timing of Jody’s transplant (and when we get the call) will be perfect, and peace will be flowing.  We really don’t need another Hollywood movie scene when the call comes again.  Yesterday had us on quite an emotional roller coaster, but I’m thankful for this practice run so we have an idea of what to expect next time, and how to be better prepared.

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