The Journey Begins

24 Sep

Last Tuesday Jody was admitted to the hospital.  Tonight he came home!  It’s been a challenging week adjusting to the idea of it being time for Jody to list for a lung transplant.  This is far from a cure, and as the doctors put it, “It’s like trading one set of problems for an entirely different set of problems.”  Throughout this past week Jody began meeting with some of the members of the transplant team, including the psychologist, social worker, and dietician.  He has yet to meet with the transplant coordinator, medical doctor, and surgeon.  In addition he has a slew of testing that needs to be done.  Once everything is completed his case will go under review to see if he qualifies to be put on the list for a transplant at Hopkins (they are quite selective in who they accept).  Fortunately, we don’t foresee this being an issue.

This week we were given a lot of information to digest, and I’d be willing to bet it’s only the beginning of what’s to come.  Some of the hardest information to hear was the possible need to relocate to Baltimore for three to four months post transplant, and the need to start fundraising for out-of-pocket expenses related to all of this.  I think our jaws dropped to the floor when the social worker mentioned a ball-park figure of how much money to raise.  I’m talking A LOT of money!  There is also the real possibility that I will run out of FMLA time and lose my job and our insurance coverage somewhere in this process.  As you can imagine, these concerns weigh heavy in our minds right now.

A few people have asked when the transplant will happen and the answer is, “We don’t know.”  A lot depends on Jody.  Lungs are given according to the severity of the patient.  In our case, if the antibiotics work to fight the infection in Jody’s lungs, he could get a little better and the transplant would be pushed out; if they don’t, he could get worse, and it may happen sooner rather than later.  The doctors have explained that there is a small window of time to get someone ready for transplant, and for Jody that time is now.  He needs to be ready now in case he gets worse later, and in case he continues on the downward trend he has been on for the last two months.  In all honesty, Jody’s lungs have really taken a hit.  It is unlikely that he will “bounce back” the way he has other times over the past year.

We are happy to be together again as a family, no matter how soon the next hospitalization comes.  Our girls got a bedtime hug & kiss from Daddy, I didn’t have to sit here alone tonight, and Jody gets to sleep in his own bed.  Even if it’s for just one night, we’re thankful!

We’re also thankful for you!  Many of you left encouraging comments, sent cards, texts, emails, or phone calls.  We may not always respond to each of them, but they are ALL read/listened to and appreciated (more than you know).  Our words seem so inadequate, but we also thank you for the gas gift cards and freezer meals.  These may seem small gifts to you but they are HUGE to us.  And finally, to our friends who have acted quickly and taken the initiative to form  Jody’s transplant “Fundraising Team,” you have NO idea of the stress you are taking from us.  I am seriously at a loss for words to express how much this means to us.  The road ahead may be long and hard for us and we hope you will continue to uplift and encourage us along the way; it may just be what gets us through.

8 Responses to “The Journey Begins”

  1. Sheryl September 25, 2013 at 6:06 am #

    We love you all so much, and are standing here ready to help in any way!!
    You may feel alone at times, but remember you are not.

    Welcome home Jody!!

  2. Jana Martin September 25, 2013 at 8:58 am #

    Tiffany, I don’t know if you can picture who I am or not (Ruthie Mull’s niece). I became aware of your story through a link Jenny Mull had on facebook. Just wanted to let you know I will be praying for your family!! What a difficult journey. Praying that you feel God’s strength and peace for each new day, each step of the way.

    • CF Wife September 26, 2013 at 3:50 pm #

      Hi Jana! Yes, I know who you are. Thanks for reading and more importantly adding us to your prayers.

  3. Pam W. September 25, 2013 at 9:39 am #

    There’s no place like home! Make time to enjoy the special blessings of everyday life…and just being together. Try not to worry about those future stressors like the cost of the transplant, your job, etc. No point wasting time on those things. For now, just trust God’s timing and power and just relish this time with Jody. HE’S HOME!! Yeah!

  4. Marilyn Titter September 25, 2013 at 10:05 am #

    Beautifully written. Enjoy the beautiful weather this week, get outside and breath fresh air Jody. It will lift your spirits. Tiff, I’m here for you, a phone call away.
    Marilyn T

  5. Robin Adams September 25, 2013 at 10:28 am #

    Thank you for sharing. My husband and I will be praying!
    Is there anything I can do in the way of meals? Or help in any way?
    My husband and I have been separated for the past two years and God has miraculously brought us back together, so I know the warm feeling of having my family back together and my husband back in our bed 🙂
    God bless you!

    • CF Wife September 26, 2013 at 3:54 pm #

      Hi Robin! Are we fellow Victory attenders? Praise God for your restored marriage! Thanks for the prayers and offer to help. Right now we are okay, but in the future a freezer meal might be nice. Some friends gave us some this time and it has been a huge blessing. I never know if I’m going to be at the hospital, work, home, or if my girls will even be here so it’s wonderful to have a ready made meal to pull out of the freezer when we are all home. Thanks again!

  6. Dixie September 25, 2013 at 9:50 pm #

    So glad you are home again Jody. Wish we were not so far away but please let us know when fundraisers are being held. May each day hold another special memory for you. Praying for strength, patience, courage, peace and yes, laughter. Love and ((hugs)).

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