I realize it’s been over a week since I last posted about Jody and I apologize. My laptop battery charger stopped working so the battery died leaving me unable to blog. I left the hospital Sunday for work so I picked up a new charger and am now back in business. I just read over the last post I wrote about Jody so I can update you from that point.
Jody’s breathing is doing great! On chest x-ray his lungs are still recovering from the infection that hit them so hard but clinically he is feeling good from a breathing stand-point. He has been off all oxygen (with and without activity) for over a week. Actually, sometime this past week they even took him off the continuous O2 monitoring.
On Saturday they delivered the PFT machine that Jody will use twice a day at home to measure his lung function. Prior to surgery Jody’s lowest lung function (recorded) was 22%. From the time we started dating, nearly 10.5 years ago, I have gone with Jody to his doctors appointments and watched him perform these pulmonary function tests. About three months before surgery I stopped watching; it was getting too hard. He would take a deep breath, blow out the air as fast and as hard as he could, giving it his all, and the results would be so disappointing. His face would turn as red as can be, the veins in his neck bulged, and the coughing it brought on was torturous to hear. His inability to do something so natural…breathe well, was heartbreaking. I couldn’t sit there and watch it anymore. So, for the first time in 10 years, I began staying in the waiting room until the test was complete. By the time I saw him he was recovered and I could pretend he never had the struggle. On Saturday when Jody tried out his home PFT machine, his lung function was 50%! This number is expected to climb through pulmonary rehab and as his lungs recover from his infection. Even better than the 50% is that the test seemed effortless. His face didn’t turn red, his veins didn’t bulge as before, and instead of five minutes of intense coughing, he didn’t cough at all. It was an emotional time for the both of us as we realized once again the implications of this gift of life he’s been given.
Since I last posted, Jody’s main issues have been GI related. After having his feeding tube revised he started complaining of abdominal cramps, bloating, and nausea. At first it was blown-off by the staff but as it grew in intensity they started to take him more serious, ordering an abdominal x-ray and CT scan. When Jody had his ‘J’ tube revised the doctor told me that he didn’t know how the tube had moved in the first place, and noted, “It should never move (into his stomach) again… and if it does… I’ll eat my shoes.” Well guess what, he needs to eat those shoes of his. Just two days after Jody’s revision (and possibly sooner, we can’t know) the tube was back up in his stomach and this time, all coiled up. They planned to revise it again but Jody was persistent that he wanted it out. Because nutrition has been an issue (he’s down to 109 lbs), they decided to leave it as is and do a calorie count over the weekend to see if Jody is eating enough on his own to sustain him. I should also mention that in addition to the feeding tube issue, the CT scan showed that Jody had a bowel obstruction which was probably the cause of his GI symptoms. Over the next few days they gave Jody treatments to help with this issue, but it never seemed to work well. While the doctors didn’t feel the misplaced and coiled ‘J’ tube had anything to do with Jody’s GI issues, we didn’t agree. It seemed he only started having problems after his tube was revised. Finally on Sunday, they pulled his ‘J’ tube out at this bedside. He said he could feel it uncoiling as it was being pulled. It was a relief to him to have it out and since then he has tolerated food without the painful cramps, bloating and nausea. I’m sure the team would deny any correlation, but it seems more than just a coincidence. Now we need to pray that his appetite will return so that he can start putting on weight.
There is so much more I could tell you about what’s been happening over the last week. Since I’m a little behind in updating you I can’t expect to get through everything in this one post. The best, most notable and surprising news I have to share with you right now is that Jody came home tonight!!! His long recovery will continue here at home. He’s still very weak and frail, and easily fatigued. There is so much for us to learn and adjust to as well as an unbelievable amount of medications to figure out. Hours upon hours of education have come down to this. We ask you to pray that the transition from hospital to home will be smooth. I look forward to telling you more about this when I get the chance. We are stunned that transplant has come and gone, and after five weeks Jody is finally home! We appreciate your continued support and encouragement as this journey is far from over. More to come… I promise. Now check out the surprise ‘going home’ shirt I gave to Jody, I think it’s my new favorite; no truer words have ever been spoken.
Welcome Home Jody!
Special ‘going-home’ shirt
CF Wife 
So happy for you all!!! I will continue to keep you in my prayers and thank God for the blessings he has given you so far!!!
Congratulations on going home! Glad to hear you are doing better and hope it continues to look up. Continued prayers for you and your family! I appreciate reading about your experience and I know all experiences are different but there are always things they don’t tell you that I learned about through your experience. It was also nice because this will be where I am being seen and will hopefully receive my transplant in the future.
Wonderfully awesome news!!! He looks terrific. Jody, keep up the hardwork.
Yay!!! Such great news!!
You are home?!??! Oh my goodness!! What a HUGE milestone. I teared up reading it. This is fantastic. Just amazing. I am so so so so happy for you guys.
God is truly amazing. What a blessing to hear Jody is finally home. Praise The Lord. Continuing to pray for this transition to your “new” routine and continuous healing. 🙂 Sending Love
God be praised for the wonderful news! Welcome home Jody, Tiffany, and the girls!
WELCOME HOME JODY!!! How great Jody, you must be so thrilled! So happy for you and your family. Looking forward to seeing you walk out you back door again. Get strong! 😉
LOVE LOVE everything about this!
Welcome home!
What wonderful news! Praise the Lord!! We will continue to pray for Jody’s recovery & that the transition goes smoothly. Gotta admit, it’s the first time I’ve prayed that someone GAINS weight! Better start eating some of those steaks Jody!! So happy for the family. Blessings to you all!
I love these “wake up” blog posts! Nothing starts my day better than knowing you are doing so well. Welcome home Jody!!!
Woohooo!!!!! HOME!!!!
WOW…PRAISE GOD! Welcome home Jody. Happy tears knowing your family is together again.
The best news ever was your call telling me you were in the car leaving and heading home, the next was seeing you standing in front if your door. All praises to our amazing God for this wonderful blessing he has given.praying for a speedy and complete recovery.
Oh wow!! Again I read this at work. I wanted to cry with joy and then do a happy dance, but couldn’t because I was in a room full of kids!! I am so, so happy that Jody came home!!! I know the journey is still a long one, but being home is awesome!!
Welcome home Jody!!!
You are all loved!!
Home! There is no better place to heal! I am so happy for all of you. Jody, you have the best nurse by your side! Your news made my day…God is good all the time…all the time God is good!
Wooohooo! You look great Jody!!
I was so surprised when I read that Jody is at home!! I felt so happy for you and so scared at the same time. I don’t pretend to know how you are feeling right now, but I can imagine happiness, but also fear since you are so far away from Hopkins. I have so many questions that maybe you can answer in your next post. Do you all have to continue to wear masks so that Jody does not get an infection? I ask that because I saw you posted a picture of Jody wearing a mask. When and how often does he need to go back to Hopkins for check-ups? Besides infection, what are the other potential issues you need to be aware of?
So, so happy for all of you!!
Love,
Marian
I’m pretty sure that my J-tube is now in my stomach too. The balloon deflated so it pulled out quite a bit yesterday and I’ve been having to tape it against my stomach. I’m going to the ER tomorrow to get an x-ray. I know how frustrating it is to deal with stomach tubes. I’m so glad to hear that he is finally home, that is great progress. I was in for 2 months after my transplant because of similar complications. I hope he continues to get stronger and is able to put on that weight again really soon.
Congratulations Jody, Tiffany and girls! Home is where the heart is, and you have shown so much courage, and patience. I know it seems overwhelming at this point, but each day will get a little bit easier. I will help out whenever you need it.
Love,
Marilyn