The night before last, the one when I posted about Jody’s issues with shortness of breath and oxygen desaturation, was a rough one. For whatever reason (blog writing, the Late Night Show with Jimmy Fallon, nursing tasks, bathroom visits), we didn’t end up going to bed until around 2 am. Three hours later we were suddenly awoken by a leaking arterial line, and it went down hill from there (unrelated to the A-Line). Jody’s shortness of breath was ridiculous. His O2 sats remained low. I actually felt bad for his nurse because, like me, I think he wished he could do more, or give him more oxygen at least. The NP happened to come in for her morning rounds and she could see how hard Jody was working to breathe. She said she was going to telephone Dr. Shah (Jody’s transplant surgeon who calls all the shots), and within minutes she returned to say they were going to transfer him back into the ICU where he could get high flow oxygen. It seemed odd to me that for so long they were against giving him oxygen (or much of it), and suddenly now it was okay. I wondered if the ICU could have been avoided altogether if they had given him more O2 prior to that point. Either way, I wasn’t all that surprised or upset about the transfer. As much as I dislike the ICU I liked the fact that he would be more closely monitored, and that he would finally get help with breathing. Once the decision was made to transfer Jody, an ICU doctor came up to evaluate him and impressively, within a matter of 20 minutes, he was on his way out the door. I stayed behind to pack up our things since we had pretty much moved in and I knew I wouldn’t be allowed back to see him until after they had him settled.
In the ICU they placed him on 6L of oxygen with an order to titrate it down as low as he could tolerate while keeping his sats 90 and above. They never did put him on high flow (which again makes me wonder why they couldn’t have given him 6L in the step-down unit). Yesterday Dr. Shah told his ICU nurse to give him a break. No walking or unnecessary exertion. The plan was to grant him an easy day with minimal interruptions so he could take it easy and rest. In theory this sounded like a good plan. Unfortunately it did not work out entirely as planned. It wasn’t his breathing that kept him from resting it was the side effects of his medications. He experienced hallucinations and near constant tremors throughout his entire body (previously these were only seen at rest, this day it was while awake as well). It felt so weird to talk to him as if he were a child because of the hallucinations. Sometimes it seemed that while he appeared to be looking right at me, he was actually looking through me. It was kind of a lonely feeling to know that my Jody wasn’t really there, and it was frustrating for him because he knew that he wasn’t in his right mind. It was hard for him to get quality sleep because he was constantly awakened by a jerk or tremor, a hand gesture (trying to touch something that wasn’t there), or a hallucination. The doctors were well aware of this issue. On a positive note, Jody’s Tacrolimus level, an immunosuppressant contributing to these symptoms, was much decreased yesterday and today it actually came back on the low side. While he is not free of the above issues yet, they are much improved when compared to yesterday. Truth be told, he is on a lot of meds that can cause these symptoms. The doctors speculate that his Voriconazole (an IV anti-fungal medication) is also the culprit for some of this, and especially for his ongoing vision problem. The thing is, one must weigh the benefits of these drugs against the side effects. In this case the benefit, healthy, functioning lungs, far outweigh the cost of hallucinations, tremors, and visual disturbances. One cannot live with sick lungs, as we know all too well. While these side effects are annoying, discouraging, and even scary at times, we trust they will not be long-term issues for Jody.
Today Jody’s oxygen requirements have ranged from 2-6L via nasal cannula. He continues to struggle with extreme shortness of breath with any movement. Today the plan was to attempt a walk or two with the knowledge that he would need additional O2 support to make that happen. At lunchtime Jody took his first walk using a Venturi mask which delivered 50% oxygen. With his nurse, physical therapist, IV pump, cardiac monitor, and myself by his side, and a chair wheeled behind, he walked 235 feet! He required three breaks during this time to allow his body to rest and his O2 sats to recover (even with the Venturi mask they dropped into the low 80’s). It’s still mind-boggling to me that just four days ago he was walking one mile at a time with no breaks, and no drop in his O2 saturation. It feels like we are starting back at square one. Regardless, I was so proud of him for getting out of bed, pushing past the pain and struggle for air, and walking in spite of it all. Even better, five hours later he did it again. This time he walked about 400 feet with no breaks at all, and his O2 sats were a little more stable. Again I made sure he knew how proud I was of him.
We are still waiting for the official result of his sputum culture which shows gram negative rods. Because of the length of time it is taking for the results to come back the doctors have an idea of what it will show and have already made a few changes to his IV antibiotic regimen. His ICU nurse, with years of experience, told me tonight that Jody might have broken his record for the most antibiotics given in a 12 hour shift. Needless to say, he should be well covered for any and every bacteria that is working against him.
Jody’s ONE ice chip
Jody is still unable to eat or drink. He is allowed one ice chip every two or three hours. His mouth is so dry and it feels like a cruel joke to say, “Here is your (one) ice chip.” As one who guzzles water all day long this is inconceivable to me. So… as any good wife would do, when it’s time for another ice chip I search the cup for the biggest, fattest chip I can find.
The wait for Jody’s new lungs is over, but now we find ourselves in another period of waiting. We are waiting for the new lungs to heal. For two weeks Jody experienced a fraction of what it is like to breathe freely and comfortably, not that those weeks were without their challenges, they weren’t. Sadly Jody’s now back to struggling for each and every breath he takes, almost more so than with his old CF infused lungs. And so we wait. And we pray. And we thank God for this gift he’s been given because we know it will get better. But this is hard. It’s so hard, especially on Jody. Tonight he seems discouraged. I remind him of his strength, his fight, and that he can do this! I remind him that even Jesus grew weary (as commented on our Facebook page). I remind him that I love him and that I’m so proud of him: his attitude, his drive and his endurance. Tomorrow is a new day, and will bring renewed fight and determination, of that I am sure. He will beat this, and he will breathe easily again soon. This I know.
CF Wife 
Jody, I have no idea how hard your healing must be. My note is to encourage you. Picture your girls and yourself doing something you haven’t been able to do like hike up a trail in the Fall. Picture the beautiful scenery, hear your girls laugh, and feel what it will be like to be healthy. Maybe seeing past today and holding onto tomorrow will help.
Hugs,
Anne
Praying for rest, comfort, endurance, Peace, complete healing and easy breathing! Hugs to both of you. You are loved!
Carol
Jody, Kevin and I are so proud of all your hard work! Keep it up! Keep pushing yourself!
Tiffany, you are doing an amazing job.
We love you both. We know the phrase well,” “one step forward, two steps back ” just keep the positive attitude. Keep the picture of Jody outside playing with the girl.
We’re sending lots of love and prayers to your family. Keep your head high, and keep fighting, Tiff and Jody! There will be set backs, but we pray that God will give you the strength to get through them during your recovery, and that you will be able to actually feel the strength and blessing of those new lungs as you breathe, quickly! You got this!
Jody, may the healing hand of God be with you, at your best, at your worst. You can do this! You will do this. You are strong, and two babies at home and a wonderful loving wife to live for. Hang in there. You can do this.
Love,
Marilyn
Tiffany, I have always admired your strength and your ability to juggle work, family, and Jody’s health issues while you were waiting for Jody’s new lungs, and this strength and determination to deal with these set backs you describe continues. You and Jody make a great team. He has dealt with these problems with such courage and determination, and you have been an unbelievable advocate and support for him. With your continued love and indomitable spirit that you show one another, you guys will be able to handle any issues that may come your way. Love you. Marian
Jody, You are such a inspiration to me and a whole lot of others. Keep fighting, better days are coming. Praying for healing and your breathing to improve with every new breath you take. Prayers for your wife and children for strength, health and a the day you come home. Blessing, Judy
Rich Ragan here Tiff and Jody,
My eyes are filled with tears. My heart is filled with emotions of love, humility, joy, sadness and a grateful attitude toward you and your kindness, strength, belief, and steadfastness standing next to your Husband, and my friend whom I admire more than my words can speak. Thank you Tiff for your strength that flows from our incredible Lord and Savior Jesus Christ.. Thank you Tiff for also caring enough to spend some of your precious time keeping us all informed. We all love you both so much!
Rich
Sorry I haven’t been in touch on here lately, but do read all of your posts! This is such a struggle for you to watch Tiffany…being a nurse, and knowing Jody as well as you do with his medical history…makes it even harder. We as nurses know more than the average person, and anticipate every possible thing that can go wrong. Know, as you do, that these people are some of the best! Patience is hard with all that’s going on now, but know that time will make things better. I can’t wait for the day that you post that “We’re going home”!! And, my friend, that day will come. I know how determined and strong Jody has been, and will be. He is a inspiration to me, and so many others…that I do know for certain. Take care, and know that my prayers for you, Jody and your family are sincerely sent always…
Jody through the years of knowing your mom there is one thing I can say she never gave up. Especially where you were concerned. She was determined to prove Medical Science wrong and the both of you have! As you got older, I would remind her that she taught you how to be strong and to never give up and time & time again you did just that! You proved them wrong! You beat the odds in so many instances…graduated High School, got married & had children. It is not in your genetic make up to give up! Although this is hard and a struggle keep the faith! No one says you have to hurry and get better we just want you to get better no matter how long it takes. I can’t begin to imagine all that you endure but there are better days ahead and know your Guardian Angle is watching over you & protecting you. Keep those precious girls in your sight and in your heart. Strive for the day you can hold them both in your arms….you are so LOVED! As far as Tiff, you couldn’t have a better Wife,Partner & Friend by your side. She is your Rock and was sent to you for so many reasons. Cherish her and all she stands for. Know you and you’re family are Loved and are being prayed for.