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 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.