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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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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.

DSC_0112A

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.

DSC_0069A

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.

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.

 

 

Thank you, Transplant, for waiting two more days

25 Aug

Five months ago, to the day, Jody was officially listed for his new lungs.  When that happened, there were two things I feared transplant would interfere with: Our oldest daughter’s birthday, and her first day of Kindergarten.  Obviously there were other things I preferred not to miss, but those were the biggest.  I naively assumed he would have been transplanted by now, so as the time drew closer I felt nervous that my fear might actually become reality.  Today I’m happy to report that it didn’t!  Thank you, transplant, for waiting at least two more days.

Tabitha's 6th Birthday

Tabitha’s 6th Birthday

Since I normally blog about sickness, and heavy-to-read topics (and there will be a little of that in this post too), I thought I’d change it up a bit and add some fun and lightness into this post.  Since February, when we took our girls to see Disney’s Frozen movie, Tabitha, our oldest, has been obsessed with the movie.  She’s been talking about her “Frozen” birthday party for months.  Because there are so many unknowns in our lives right now, and despite the fact that she has had a birthday party each year, we decided to forgo the party this year.  Tabitha had a hard time accepting and understanding this so we promised her a Frozen Fun Day at home instead, just the four of us.  The hardest thing for me about not having a party was not making her a nice cake, something I have always done and enjoyed.  As Tabby’s birthday grew closer, I

Tabitha's "Frozen" Cake

Tabitha’s “Frozen” Cake

said, “the heck with it,” and decided to go for the cake I had been planning to make, knowing it would never get eaten by our family of four, but not really caring.  Having no training in cake decoration, only learn-as-I-go experience, I’m happy with how the cake turned out.  More importantly, the birthday girl loved it!  We had a great day celebrating Tabitha’s six years of life, thankfully together as a family, and in the end I don’t think she was too bothered by the fact that she didn’t have party.

6th Birthday, Ice princess, Tabitha.

6th Birthday, Ice princess, Tabitha.

Frozen Fun Day completed (thanks again transplant for waiting), today marked another milestone, Tabitha’s first day of Kindergarten.  She was very nervous about this, especially getting on the bus, but thankfully, it went well.  I didn’t even shed a tear until after the bus pulled away.  Here are a few of my favorite shots from the morning.

1st Day of Kindergarten

1st Day of Kindergarten

I’m so relieved, and thankful, that we got to experience these important days with Tabitha.  I’m also grateful that Jody was out of the hospital and well enough to spend this time with us.  Last week, after four days on IV antibiotics, he seemed to be getting worse and we questioned if he might end up admitted.  He felt achy and extremely fatigued, more so than normal.  He spent most of the week in bed sleeping and joked that he felt like a newborn, basically just eating and sleeping.  We figured he might have picked up a virus and needed to do what his body was telling him to do to fight it off.  We’ve been told that for people with CF, especially end-stage CF, a simple virus can hit them hard and take a while (even six weeks) to go away.  Thankfully after three days of rest, he seems to be feeling better.  I never quite feel like he’s off-the-hook when it comes to bacteria and viruses, but I’m glad to see him up, moving around, and spending time with us again.  I would like to ask for prayers that this continues.  Our youngest daughter woke up this morning with a nose that’s running like a faucet, probably a viral infection that will just take time to go away.  Jody can’t afford to get this.  I can’t afford to get this (I need to be healthy and ready to be at his bedside when he gets his new lungs).  Please pray that Piper doesn’t share her sick germs and that her symptoms disappear as quickly as they came.

Thanks for reading.  I hope you enjoyed the pictures (click them to enlarge) and a slightly different, more fun and easy-to-read post.

 

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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.

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