Here is an update on Jody, as he remains in the hospital. The blood gases he had done showed that his CO2 levels were slightly elevated, but not enough to be the cause of the headaches he’s been experiencing. This is a good thing!
He is continuing on triple antibiotics, and has been tolerating them well. Thanks to a newer antibiotic, which is less toxic to the kidneys, his doctors have been able to eliminate Vancomycin from his standard treatment. Jody has had many problems in the past with this drug negatively impacting his kidneys. When that happens he can’t be given the full doses of the antibiotics he needs to fight the infection (in order to preserve his kidneys). The new drug that he is receiving in place of Vancomycin is working well, and his kidney function has been staying within the normal range (a huge relief to me, an ex-nephrology nurse). This is another good thing because he is now getting the full doses of all the antibiotics he needs. Hopefully they are the right antibiotics to treat the infection.
Today when the CF doctor rounded he came in Jody’s room just as he was walking back from the bathroom (which is in his room and just a few feet from his bed). The doctor noticed Jody’s shortness of breath and asked him about it. Usually when the doctors see Jody he’s sitting in bed, or if we’re at the clinic he’s sitting in a chair, and isn’t showing signs of shortness of breath. I, on the other hand, see him struggling to catch his breath all.day.long as he performs normal activities of daily living. My heart breaks for him often when I hear him huffing and puffing, say after a shower, or when doing other simple tasks that shouldn’t cause someone so young to become short of breath. I wish he knew what it is was like to breathe effortlessly, to take a slow, deep breath and fill his lungs with air. We have this thing we do, him and I, where we try to mimic the other ones breathing pattern. I try to keep up with his fast, shallow breathing, but it usually doesn’t last very long. Breathing like that soon makes me feel short of breath, craving a “normal” slow deep breath to really fill my lungs with air. Jody on the other hand, tries to keep pace with my infrequent (compared to him) deep breaths, and simply can’t do it. But maybe someday, post transplant, he’ll be able to breathe like me.
Okay, I realize I’ve gone off on a rabbit trail. Let us return to today when the CF doctor came in. Having seen first hand how short of breath even a walk from the bathroom to his bed made him, he told Jody he wants him to start using his oxygen more often. Basically, he wants him to wear it anytime he’s up doing something. If he’s sitting down, not doing anything, he can take it off. This is a change from how often he has been using it. The idea is that if he is making his body work extra hard to breathe (without using oxygen), it’s going to be harder for his body to fight this infection. It makes sense, but it might take Jody some getting used to: having his O2 tank permanently attached to his back, and needing to fill and replace tanks often throughout the day. I feel like this change in and of itself is pushing Jody one step closer to transplant, which is a little unnerving to me, if I’m honest.
Originally the plan for Jody’s discharge was this past Friday. When that didn’t happen, the plan was for discharge today. Obviously that is not going to happen either. The hold up is Jody’s blood work, particularly his magnesium and potassium levels, which are too low. Both of these electrolytes can cause heart arrhythmias when they are outside of the normal range. Today he was treated with both IV magnesium and IV potassium. One of the antibiotics Jody is receiving is most likely the culprit for these low levels. Regardless, the doctors don’t feel comfortable sending him home until his levels are stable, and as much as I want him home, I want him safe, so I’m okay with that. He’ll have more blood work drawn tonight and probably again tomorrow. We are hoping that this corrects itself and he can come home before the snow storm they are predicting. When that happens he will finish up his IV antibiotics here as he has done many times in the past, and will continue to have blood work drawn at home through a home care agency so those levels can be closely monitored.
Thanks for reading this update and following our journey. Holding onto hope!