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…

 

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.

 

Save the Date:

Auction Promo

 

Five Dreaded Words

16 Aug

“I think I’m getting sick.”  Those are some of the most dreaded words for a CF wife to hear.  There is a lot of physical, emotional, and financial stress behind those five words (physical, as in coordinating childcare, getting things done at home, rotating between home, hospital, and work, etc.).  When Jody speaks those words I’m usually not surprised and often it’s something I’ve wondered about myself.  It takes a conscious choice however, to move from denial of another infection to accepting the inevitable, and seeking treatment. This begins by making a dreaded phone call to Jody’s CF team, alerting them to his symptoms and our suspicion of another infection.  Such was the case this week.  We enjoyed the entire month of July free of infections and hospitalization, for which we are oh so thankful!  Suspecting our infection-free period was coming to an end, Jody made that dreaded phone call this Tuesday and was seen in the CF clinic on Thursday.

As a result of Jody’s complicated (antibiotic) allergies with anaphylactic reactions, we have been told in the past that he is no longer allowed to start IV antibiotics from home.  Instead, his team feels he needs to be monitored closely, in a hospital setting, to ensure his safety when initiating these powerful drugs.  Because of this, we left for our Hopkins appointment on Thursday with our bags packed, prepared to stay, but hoping to return home.  And that’s just what we did!  Surprisingly enough, Jody’s doctors decided to put him on the same antibiotic regimen they used in June (Zyvox, Zosyn, & Colistimethate), and felt he could begin them from home since they were well tolerated before.

Jody's "Luggage" (O2 tank and a continuous IV pump).

Jody’s “Luggage” (O2 tank and a continuous IV pump).

Yesterday morning all of his supplies were delivered.  I inserted and dressed the needle in his chest (he has an implanted port for medication administration), and with the Epi pen nearby, he began all of his antibiotics, thankfully without any difficulties or reactions.  For the next two weeks (at least), Jody will have some extra “luggage” to carry around, as he puts it, referring to a continuous IV pump used for one of the three above drugs.

Jody's continuous IV pump

Jody’s continuous IV pump

The advantage to this pump is that he doesn’t need to wake up early and during the middle of the night to give himself his medications since it will do it automatically while he sleeps.

We’re really glad Jody was able to avoid another hospitalization.  I work 24 hours this weekend and it gives me much peace of mind to know that he will be at home, relaxing, instead of in the hospital where I would be missing out on his care and physician visits.  Still I wish I could be home with him this weekend but such is the life of a CF wife.

Completely off the subject, the wait for transplant continues.  August 25th will mark five months of being active on the list.  After getting the first call for his new lungs only a month after being listed (which turned into dry run 1 of 2) we naturally assumed transplant would happen sooner rather than later.  Honestly, for a variety of reasons, we truly believed it would happen in June or July.  Our oldest daughter turns six August 24th, and will begin kindergarten the next day (8/25), so we are now hoping that transplant will at least hold off for this, especially since she has a lot of anxiety about starting school.  It’s hard to think that because transplant hasn’t happened yet we will miss out on a lot of her kindergarten experience when the time does come, and it also poses a lot more work for our parents, who do not live in our school district, and will need to transport her to and from school everyday.  Our youngest also starts preschool in the beginning of September so she will need to be transported back and forth as well.  This is one of the reasons we hoped transplant had happened already.  On the flip side, we understand that in order for Jody to get his new lungs it means the loss of another life, and that’s not something we want to rush, especially just to make our schedule more convenient.  Schedule aside, Jody is ready for his transplant.  He’s tired of the hassles of Cystic Fibrosis, the struggle to breathe, the inability to do the things he enjoys, and of the need for continuous oxygen.  While we may not understand it, we trust that God’s timing is better than ours, and hold firm to the belief that Jody will get his new lungs in God’s most perfect time.  Until then, please continue to keep him, and our family in your prayers.

 

Save the Date:

Auction Promo

Rare Moments

18 Jul

It’s been a few weeks since I’ve given you an update on Jody and often no news is good news.  June was a rough month for him, spending a lot of time in and out of the hospital or home sick and on IV antibiotics.  Typically when Jody finishes up a three week course of these antibiotics (assuming he’s been on the right combination of them), his energy returns and he starts feeling a little better.  Usually his PFT’s (lung function studies), improve slightly as well.  This go-round was no different.  In July, the girls and I appreciated seeing him spend less time in bed sleeping, and more time awake and active (as active as one can be in end stage lung disease where every activity takes your breath away).

One day this month the four of us even spent a relaxing day at a friends in-ground pool.  Although Jody was tied to his O2 tank, he could leave it on the side and at least stand in the pool, by the edge, and get wet.  The girls enjoyed having him there, even if he couldn’t swim with them, or throw them in the water like old times.  That day Jody took his afternoon nap on a lounge chair under an umbrella, while the girls and I enjoyed a rare (as of late), fun summer afternoon.  While it seems everyone around us is enjoying summer to the fullest, free and unhindered by disease, we are learning to be thankful for these rare days, hours, and moments when we can forget about the past and future, so full of uncertainties, and focus on the present.  Moments like these are good for the soul.

As the saying goes, all good things must come to an end, and this is especially true when speaking of Cystic Fibrosis.  We’ve noticed a pattern for Jody where after about three weeks of IV antibiotics he starts feeling pretty good, but sadly it only lasts about three or four weeks.   Soon “good” turns into “okay,” and okay turns into “lousy,” and lousy turns into a hospitalization.  Yesterday Jody had a routine check-up in the CF clinic and we could classify him as being in the “okay” category.  He’s been feeling a little more short of breath, his lungs are a tad more junky than normal, and his PFT’s are a little down (not quite as bad as they were in June).  If left untreated, the chances are Jody will quickly move from “okay” to “lousy” and I already told you where that will land him.  Hoping to prevent this, the doctor ordered oral antibiotics (in addition to the ones he takes daily to hold the chronic bacteria in his lungs at bay).  She also wants him to increase his oxygen to 6L with activity (showering, taking care of our girls, climbing steps, etc.).  The fact that he is now requiring 6L of O2 should bump up his score on the transplant waiting list.  More oxygen requirements also means bigger, less convenient tanks for going out.

We had been hoping to go out for dinner to The Cheesecake Factory at Baltimore’s Inner Harbor following Jody’s appointment, if he felt up to it.  The last time we did this was a little over a year ago to celebrate a good appointment.  We knew this wouldn’t be a celebration, but rather, one of those rare times when we live in the present, forgetting everything else going on in our lives, and enjoying the simple moments in life.  And so we did, big oxygen tank and all!  We even took a very short walk after dinner.  I have been working on contentment, in suffering and in waiting, and as we stood there, overlooking the harbor, hand in hand, oxygen along side, I felt content.  I felt thankful, for the health Jody does have, and for the oxygen tank which allowed us that moment.  A positive attitude and contentment in this situation doesn’t come easy; those “lousy” days get the best of me sometimes, but I think it’s those few “good”, I mean really good, days/moments that get us through the bad.  It’s also the hope that eventually, after transplant, the lousy days will be few and far between as they are replaced with days filled with pure goodness.  Until that time comes, we’ll continue to relish the rare moments in our present life that make it enjoyable and endurable.  I hope you will too.

 

 

 

Mark Your Calendar

9 Jul
Save the Date

Save the Date

October 11th, 2014.  Mark. Your. Calendar.  This is the date that has been selected for our biggest fundraising effort to date, including a live and silent auction.  We are super excited for this day, and hope you will join us.  This event has the potential to make a big impact in pushing us closer to our fundraising end goal, but we can’t do it without your attendance.  Please mark Oct. 11th on your calendar and plan to attend.  This event includes family fun, so bring your whole family with you.

This auction is three months away and preparations are in full-swing.  We are now accepting donations of items and/or services as well as auction sponsors.  Perhaps this is something you can help us with, and here are some examples:

  • A themed gift basket
  • A service: photography, lawn mowing, snow removal, hair cut/color, or maybe you enjoy cooking and would be willing to auction off 12 homemade meals (one/month for a year for a family of five or less).  The sky is the limit.
  • An item:  Are you a talented artist, a business owner, a vacation holder, an antique collector?  If you have an item that you believe would do well at an auction, we welcome your gift.
  • An experience: Do you love to entertain?  Could you host a dinner party in your home or backyard?  Perhaps you have your pilot’s license and could offer a short flight experience.  Think boating, ballooning, ziplining, a limousine ride, the possibilities are endless.  You may not be able to provide this service yourself, but would you be willing to purchase this item and donate it as an auction item?
  • Event sponsor: For a minimum donation of $250 your business name and logo will appear in the event catalog and other promotional materials, as well as recognition from the stage during the live auction.
  • Family Fun help: Part of this event will include family fun time.  Are you a face painter and willing to offer your time?  Could you set-up a fun photo booth?  Is there a practical service you can offer to kids on the day of the auction?

We are anticipating a lot of out-of-pocket expenses associated with Jody’s transplant and recovery so you can imagine we are hoping this auction will be hugely successful.  In order for that to happen we really need your help.  Please SHARE this event, and encourage others to attend.  Additionally, if you know of someone (your boss, family member, or friend) who you think could donate something for the auction, please contact jamie@supportjody.com for an auction donation form.  If you follow our Jody Needs Lungs Facebook page you will soon begin to see information posted on businesses and items that have already donated.  This info will also be able to be viewed under the “Auction” tab on our website, JodyNeedsLungs.com.  We are so thankful to each of these people and business who were touched by our story and moved to help.  We hope you will too.

Auction Promo front

Auction Promo back

* Donations are not tax-deductible*

Follow

Get every new post delivered to your Inbox.

Join 144 other followers

%d bloggers like this: