This week has been a little bumpy. Our youngest daughter is just over a cold which required antibiotics and two different inhalers, five times a day (not uncommon for her when a cold strikes). While this in itself might stress a parent, I am unfazed. Instead, my stress comes from fear of this cold spreading around the family and to Jody in particular. I know that if my girls and I get a cold we will be okay, if Jody gets one, he may not. Hand sanitizer fills almost every room in our house. We practice frequent hand washing, and I wear masks when caring for our sick kids. If I think there is even a slight chance that I might be coming down with something, I sleep on the couch (not because Jody asks me to, but simply because I don’t want to take any chances of making him sick). Despite all my crazy attempts to keep germs from spreading, they still sometimes do. This is one of those times.
Jody’s been showing signs of another lung infection. Sadly, he’s only been off IV’s since mid March when he completed a three-week course of antibiotics. It’s disheartening for him to have a repeat infection so soon, but, this is the nature of his disease. Jody was seen in CF Clinic on Tuesday to evaluate his symptoms. His pulmonary function test showed his lung function has dropped to 25%, an all-time low for him. He has also lost some weight. We were completely prepared for a hospitalization, and were quite surprised that his team felt he could start another course of IV antibiotics here at home instead. The plan was to try a different group of antibiotics than the ones he was on three weeks ago, one being completely new to Jody.
Yesterday afternoon a visiting nurse came to our home to help Jody with getting started on the above meds. She stayed for a full hour after the new medication was completed to monitor for any side effects. When there were no signs of a reaction, she left. Later on Jody’s eyes started to burn, his chest felt tight, and his throat began to feel scratchy, and he was having a hard time staying awake. Jody has a fairly recent history of an anaphylactic reaction to an antibiotic, and while this wasn’t that, we knew this was not something to mess around with. And so… we didn’t escape hospitalization after all. Jody was admitted to Hopkins last night.
After a full night of IV fluids, some Benadryl and IV steroids, he is feeling much better this morning. As it turns out, the doctors believe this reaction was not from the new medication but from one he has had in the past. This medication, Meropenem, is in the same family as Cefepime, the one that caused his anaphylaxis before. You might be thinking, “Then why did they give it to him?” Well, under the supervision of an allergist Jody was desensitized to this drug and has safely received it since then. He even had allergy testing done which showed he is not allergic to it. Because of this, the doctors felt he could safely be given Meropenem, Cefepime’s “Cousin.” It turns out they were wrong.
Jody absolutely needs IV antibiotics to fight his lung infection so his team of physicians are consulting with an allergist again to devise a plan that will work for him. This may or may not include desensitizing him to Meropenem. For right now he is getting oral and inhaled antibiotics. We pray they can find the right concoction of drugs that his body will safely accept, and will work to treat the infection.
Watching Jody leave last night was hard, but watching our five-year old as she watched him go was heartbreaking. She stood at the door, crying, saying, “Daddy, I don’t want you to go to the hospital, I don’t want you to go!” And she cried for a few minutes after he left. It was the first time I saw her visibly upset over a hospitalization. Our youngest child, who is three, has trouble with her speech so she isn’t able to tell me how she feels about this, and honestly I don’t think she understands too much of it. Every now and then she will randomly say, “Daddy, hospital?” in her cute mispronounced way that lets me know she’s missing him too, and wondering why he’s not here. Any parent wants to protect their children from hurt and pain, and so it saddens me that in this case, I can’t (in fact I know it’s only going to get worse). Since I can’t change the situation, I can only do my best to ease the hurt. One way I have done this in the past is to take some of our girls favorite bedtime stories to the hospital and make a video of Jody reading to them. The girls always get a big smile when I say, “Daddy’s going to read you your bedtime story tonight,” and we open up my laptop to watch him on video. Sometimes they even say goodnight over Skype. I am glad that Jody is safe and being well cared for, but I hope that this hospitalization won’t be too long, so that he can come home and read those bedtime stories in person, with two little girls sitting by his side.
CF Wife 
That’s a great idea to have the videos of Jody reading them their favorite books!
Bless your hearts. I am praying for all of you. Marilyn
Breaks my heart to hear….
Last week several in our family were fighting colds and “stuffiness” and were talking about the fact that it is exhausting and frustrating to experience that for a few days – but Jody struggles many times more than we ever have, 24/7.
It is impossible to understand what you all are going through. You have our deepest respect, admiration and love….and continue to be surrounded in our prayers.
Made me cry…… This amazing person, will give Jody new lungs, and a new life for his family. It will make me think of them when Jody gets his new lungs.