Bump #1

20 Sep

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

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

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

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

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

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

 

 

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18 Responses to “Bump #1”

  1. Sheryl September 20, 2014 at 12:49 pm #

    Jody-
    Sounds like things have been hard. Deep breaths my friend…… It will come. It might take a long time. But it will come. Promise.
    Keep being strong. I think of it as “Conner strong” as you keep putting one foot forward.
    Sending our love.
    Thanks again for calling us the other night. Totally made our evening and were so excited to hear you.
    Still planning on some day you going for a short run with me!
    We love you both.

  2. Kristy September 20, 2014 at 1:19 pm #

    Keep pushing forward! Every hurdle you come to will only make you that much stronger, physically and/or emotionally. But it’s ok to breakdown from time to time. Just don’t stay down. Let your feelings out, pick yourself back up, and look at all you’ve done so far! Praying for strength in all aspects for all of you!

  3. Nicki G. September 20, 2014 at 1:28 pm #

    I wish that I could come up with the words powerful enough to give you comfort, but I am not really good at those things, so I will just say that the past few blogs I have read have shown how strong you both are as individuals and a couple. I think and pray for you both daily and hope that in the next few days you find comfort and peace knowing that you are doing all you can possibly do right now and remaining strong is soooo important. Thinking of you both and thank you so much Tiffany for keeping us all informed!!

  4. Cindy Mellinger September 20, 2014 at 1:45 pm #

    One day, one step at a time will bring you to your ultimate goal. While difficult at times, focus on your spirit and the wonderful progress you already made to get you through.
    It is just a bump.
    Tiffany, I really sympathize with you. I know all too well how our loved one can be treated in these facilities, It does seem rather heartless of the staff sometimes, and it’s heartbreaking to us. You’re right it IS different when it’s their loved one. A nurse I had removed from my Mother’s care actually, many months later, apologized to me wholeheartedly for her lack of compassion towards my Mom, because of something similar happening to her own mother.
    A wake up call to one walking in another’s shoes, so to speak.
    Keep smiling!
    Much love to you.
    Aunt Cindy

  5. Sharon September 20, 2014 at 1:49 pm #

    We all get moments where we fill ” I can’t do this” but we let that moment pass and a new strength imerges , so it’s ok , you had a down time now draw on your faith, your inner strength and the strength of prayers that I and all your friends are sending you , you are much loved by so many.

  6. Brittany Wood September 20, 2014 at 1:59 pm #

    Jody you are an inspiration to me! I was activated yesterday, while in the MPC here at Hopkins. I look forward to the blogs each day! You are doing exceptional in my eyes! Keep strong… You deserve this beyond a doubt. I don’t know you personally, but I can definitely relate CF… Prayers and support from the Wood family… 🙂

  7. wyomingjackalope September 20, 2014 at 2:06 pm #

    Your blog popped up as a recommendation just the other day and I pushed the follow button not realizing the emotional impact it would have. I know there are no strangers in our Christian family and though we have never met, my prayers are with you all.

  8. LaRae September 20, 2014 at 2:33 pm #

    Praying that you both feel God’s presence today in that ICU room. I pray that Jody is encouraged in the special way that God knows he needs it.. Praying that each & every person that comes in contact with Jody today will have understanding, compassion & be a blessing to you both. I pray he has quick healing and will be able to eat for the holidays. I pray all these things knowing that God is able! Love y’all

  9. Kate Schaub (Preschool) September 20, 2014 at 2:46 pm #

    You are an amazing man, Jody! Praying for your strength and healing. May God bless you each day in this journey!

  10. Anne September 20, 2014 at 2:50 pm #

    Jody, I cannot even imagine how much you are suffering right now, and I will not make light of it. But – I also know you. You never give up! You scaled mountains in Israel that exhausted Joel and me, yet you kept going. The mountain you and Tiffany are scaling now is harder, but not impossible. God will make a way for you to eat, breathe, and regain your strength. If He works for good in ALL things, He’s not going to stop now.
    Hugs

  11. Kelly September 20, 2014 at 6:11 pm #

    Jody, I am not sure the words to speak right now. But I want you to know that although there are gonna be days when the fight seems impossible, and the dissapointments may be more than see doable, remember, God doesnt give us more than we can handle. that phrase has been used in my life many times, and many times I have tried to mock it or wished God didnt trust me so much. But you got this Jody. You have fought so hard for so long, And I am praying that your fight can end and breathing, something we take so much for granted, will come to you easily. Jody I pray that God will intervene when you cant fo yourself. Let Him take over when it gets tough, and rest. God will see you through this all. Jody you are such an amazing inspiration and I pray that the days, weeks and months ahead will be a raod with little hurdles. And many joys. We love you Jody. And tiff.. May god be with you as well, as it is hard to watch someone you love so much suffer. you are truely and amazing wife, and I pray that God will give you the strength needed when you need to be strong for both of you. But dont be afraid to have a breakdown, if needed. it helps with the healing, and I personally feel a good cry can cleanse so much. We love you all and we are praying for you Jody and the girls.

  12. Carol Musser September 20, 2014 at 7:20 pm #

    Jody, you have climbed so many mountains in this journey of CF. This is just another one towards the end result of health, clear lungs and easy breathing. I have the feeling when the PPN and nourishment fuels your body, extra strength physically, emotionally and spiritually will happen. I can only imagine the frustration and agony of not eating/drinking must be. I have a brother in law that had surgery And couldn’t eat/drink for a long time and I remember how difficult it was for him, but. . . . . It is only for a season. You are tough and you WILL power through. When you are allowed to eat again, I will make you a dinner of ANYTHING you desire!
    You are a fighter, and you have an amazing woman beside you! You both CAN and WILL get thru this. You are not alone, you have an army of people who love you, are praying and pulling for you!
    Hopefully you get rest this weekend, then are ready for moving and grooving next week.
    I know Sheryl is practicing up for a race with you — You really need to kick her butt!!
    You guys are loved!
    Carol

  13. Hippie Shepherd September 20, 2014 at 9:16 pm #

    I’m so sorry to hear that he is not able to eat. I have been in a similar boat. After my transplant I got SMA syndrome (from losing so much weight right after surgery), which is where your superior messantaric artery collapses onto your small intestine not letting any food go through. The doctors didn’t believe something was physically wrong with me when I began throwing everything up daily. This went on for about 2 weeks. They had to put a j-tube in, that is one that bypasses the stomach and feeds straight into the intestine (passed the kink). After being fed like that for a few months and gaining my weight back it unkinked and resolved itself.
    Then just recently (a few weeks ago) I had acute kidney failure from the antibiotic Colimycin and my stomach stopped working for some reason. So they had to put in another j-tube to feed me past my stomach again. It took them another 2 weeks to figure out that something was wrong this time too, so I was starving that whole time. So far all I can handle is water, nothing else goes through. I’m used to a stomach tube though, I’ve had one since I was 7. It is a great thing to have, it has kept me alive all these years.

  14. steph September 20, 2014 at 9:24 pm #

    So after you suffered a little while, he will restore, support, and strengthen you, and he he will place on a firm foundation. All power to him forever. Doing my devotion today and thought of you guys. Praying.

  15. Marilyn Titter September 21, 2014 at 3:32 pm #

    Jody, Jody, Jody, hang in there buddy. Tiff, I have been right where you are. You guys are leaps and bounds further along than Paul was at this stage. Just know that all the people at JHH are there to protect you, heal you, and even the rude ones, are there to make you better. It will come, just maybe at a slower pace than you want. Lung transplant is not for the faint of heart or soul. There will be tough days. I will be praying for you both that you can gain strength, patience, and faith in yourselves, the staff, oh, and for swallowing, and pain management, and good rest. Those chest tubes are rotten, but play an important role to keep you from filling with fluid around these wonderful new lungs. I will also be praying for the family who had to give up someone so that you can have those wonderful new lungs. Take good care and rest when you can – both of you. You are on the right path. Love, M

  16. Krista September 22, 2014 at 8:32 am #

    Jody, you are such an incredible man. There aren’t many people who could endure everything that you have been thru. Keep your faith and know that the Lord will pull you thru this. We are praying for healing, strength and patience.
    Tiff, you are one amazing wife. The amount of time and effort that you put in to being with Jody, on top of the every day life. God sure knew what he was doing when he put the 2 of you together.
    We are continuing to pray for the 2 of you, plus the girls, your moms and the hospital staff. We love you guys! If there is anything you need, don’t hesitate to let me know!!

  17. Jamie D September 22, 2014 at 9:17 am #

    Good morning Jody. We are rejoicing with you as you’ve gotten your lungs! Please know that Sarah and I have been praying for you and are believing in faith that God will answer those prayers for strength and peace for you. Hang in there…one day at a time. You are an inspiration. We are cheering you on, Jody! Tiffany, your selfless faithfulness to Jody and to the Lord is an inspiration as well…so proud of you guys.

    Psalm 145:18 The Lord is near to all who call on him, to all who call on him in truth.

    Jamie and Sarah D

  18. klesh99 September 23, 2014 at 12:40 am #

    Jody, it is an honor to call you a friend. As in, one of the strongest I have ever known. And that is or you too, Tiffany. Keep on keeping on, one day at a time. You have a huge army cheering for you and praying for you and your family. Keep your eye on that beautiful day… home with your family, breathing easily, recovered from this huge surgery… You got this!!
    Kendra Gascho

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