Jody is still hanging out in the ICU and not much has changed since my last post. Breathing continues to be a struggle and is the top concern of the doctors. As anticipated by the infectious disease doctors the bacteria in Jody’s lungs has been identified as a resistant strain of Stenotrophomonas. By resistant I mean that this bacteria is hard to treat because many of the available antibiotics do not knock it out. The good news is that because this is the bacteria we were expecting to find, he was switched days ago to antibiotics they feel will actually treat it. Unfortunately, Jody’s immune system is completely shot (to prevent his body from attacking his new lungs), so fighting this infection may not be an easy thing.
Now for some bad news, he’s not getting better. It seems Dr. Shah isn’t so sure aspiration and/or infection are the complete cause anymore. If it were either of those, one would expect to have started seeing small improvements by now, and we have not. Today they are going to do a biopsy of his lungs to check for rejection. Dr. Shah doesn’t seem convinced that this is what’s going on either. We are then left with the burning question…what is it? No one really knows what it is that’s got Jody’s new lungs so beat up. We desperately need an answer so the doctors can figure out how to fix it. The results of the biopsy will take a few days to come back so we won’t know until then if rejection is the issue.
After 21 days, the thorn in Jody’s flesh, his left chest tube, will most likely be removed today (after the biopsy). For so long we talked about the celebration we would have when that final tube was pulled, and I’m kind of sad that Jody is a little too sick and a little too delirious to join me in the celebration. He certainly will not miss the pain this tube causes, his shorts getting drenched from it leaking, or the skin tears from the bandages which cover the insertion site. Jody’s tube is still draining a decent amount of fluid but there is a theory that the presence of a chest tube in the body may actually produce more fluid. They hope once the final chest tube is gone his body will stop making so much fluid and will absorb that which is left. I hope they are right and that he won’t need a tube to be re-inserted.
I’ve been working on this post in between interruptions all morning. One positive change to report is that I got the approval for Jody to have one ice chip per hour instead of every two or three hours. He can have 24 big, fat ice chips a day! The doctor also approved him for hard candy. If he can stay awake long enough to eat it, I think this will be helpful. I also got an order for Jody to get some medication at night to help with his hallucinations so he will hopefully be able to get better sleep. At this point it would be too detrimental to his lungs to stop the medication causing these effects (Voriconazole) so hopefully the addition of this new med will help lessen those effects. The transplant pulmonary team stopped by a little bit ago. They seem encouraged that while he hasn’t gotten much better he hasn’t gotten worse either. I’m thankful for this but I’m ready for some signs of progress and Jody is too. For now we cling to the fact that he hasn’t gotten worse and we look forward to the day I can tell you he’s actually gotten better.
CF Wife 
Praying the removal of the chest tube goes well and that the biopsy shows no rejection and that God in his wisdom will bring to light what is causing this issue so that we will hear those words of progress and doing better . Sending hugs and prayers your way.
Ahhhhhhh, your journey has been so painful to read/ hear about, even though you send out positive vibes with every post. I can imagine how frustrated, exhausted and sometimes so agonized you must be. Keep your hope, and we will keep praying for answers, healing and strength!
Love you guys!
Carol
We are praying for a positive change soon! Praying that you are able to stay upbeat as well. As the caregiver, I understand how hard this is and you just want someone to hold you up!! I’m praying for you as well my friend!
As always you are in our special thoughts and prayers.
May God give you strength to be able to endure each hurdle one day at a time.
A Special Friend
Paula
Praying often for you all. Praying for healing and hope and against discouragement!
Hoping you can get answers….. Good answers. Meds can be given and he can get better and home where he needs to be.
We are leaning on Jesus for help. He will make a way! Hugs!
I hope you find some answers and that he begins to show improvement soon. I hope he doesn’t need his chest tube put back in, I know how painful it is to be replaced. I’m back in the hospital myself. They put my in after my appt on Thursday because my breathing was so bad because of the anemia they found the week before. I’ve been on my bipap the last few days and nights.
I had quite the sleepless night last night and spent time praying for you and Jody. Praying that there are no more hurdles and only miracles!!
I continue to pray for strength for Jody, to face each day. Strength, and patience for Tiffany, wisdom for the doctors, compassion for the nurses, and healing, healing, healing. I pray often and with a determination bar none. Know that many are praying for you!
Love,
Marilyn
We read your blog daily and hope that the doctors find some answers and the chest tube removal does in fact lead to good things!
Keep hanging in there.
Fellow CF wife and mom of 2 kids, Liz
Dear Tiffany, Just a quick note to tell you that I am praying for Jody and his lung function to be restored. Also praying for strength and peace for you and your girls. Your posts have been appreciated as they help to know how to pray. Blessings to you – you are a wonderful support to Jody. You are also a wonderful writer. Janet Hershey