Jody has been home from the hospital for five days now and we are settling into a new routine. I have three weeks off work and while I’m thankful for that, it doesn’t seem like nearly enough. I remember the transplant coordinator at the hospital telling me to be sure I was rested and ready for discharge because it would be “all you (me) at home” taking care of Jody. I am surprised at how much time post-transplant caregiving takes (that and being Mommy). Twice a day Jody has a number of self-monitoring tasks he needs to do and record, such as weight, vital signs, lung function testing, etc. He has an extensive medication regimen that begins at 8am and concludes at 10pm (see photo on right of all his oral medications). He also has a number of intravenous (IV) and inhaled medications. It is so weird to me that his entire medication list is new (as in, he no longer needs most of the CF meds he’s been on for as long as I’ve known him). It feels like everything I’ve learned in the past 10 years about Cystic Fibrosis is thrown out the window and now I’m learning an entire new beast called ‘lung transplant.’
At discharge we sat down with a pharmacist and Jody’s transplant coordinator to review his meds and fill his first pill box. We were given an eight page chart full of medications to guide us with what to take and when to take it. This first week I gave Jody a ‘free pass’ and I took responsibility for giving him all of his meds at the appropriate time. Next week we will do it together and the third week he will do it by himself while I watch.
I learned a few things this past week, one being that the pill box provided by the hospital was not working (at least for me). There were not enough slots in a day to accommodate the numerous times he needs to take meds. For instance, all morning meds were lumped into one slot even though they are taken at different times throughout the morning. After an unsuccessful Google search for a six-slot per day (or more) pill organizer, I decided to get creative and make my own. I bought two seven-day pill boxes with four slots for each day. I flipped the boxes on their side to make the seven-days become seven-slots (per day). Now I can label the specific time Jody needs to take his meds and I even have an extra section for PRN (as needed) drugs or Jody’s digestive enzymes. I realize that pill boxes are not exciting reading material so please know the only reason I share this with you is because there are a number of pre and post transplant readers of my blog who might find this method helpful for them as well.
In addition to medications, Jody also needs to check his blood sugar four times a day and often requires insulin coverage (he will most likely develop full-blown diabetes as a side effect of some of the medication he is taking for his lungs). One thing that is odd about this is that because of his Cystic Fibrosis, which still affects his GI system, he doesn’t need to limit his sugar/carbohydrate intake. As a result, he can eat things most diabetics would need to avoid, although it does cause his blood glucose levels to rise significantly. It’s hard for me to understand this balance or lack thereof.
On the day of discharge Jody had swallowing study #5 done. If you remember, the week before he was given permission to eat again, but wasn’t allowed to drink thin liquids. At this test they did clear him to drink regular liquids but he must tuck his chin down to his chest to swallow. He is still experiencing laryngeal penetration where the liquids go down into the larynx and are stopped by the vocal cords from entering into the lungs. He was given a special cup to use for liquids because it only allows him to take in 10 mL of fluid per sip. I lovingly refer to this cup as his ‘adult sippy cup’ because that’s just how it looks. This cup prevents him from taking in large volumes which would most likely make their way past the vocal cords at some point. After everything we’ve been through another aspiration episode is the last thing we need. Jody also can’t eat foods that are mixed with liquids such as cereal or soup, like vegetable. Additionally, to prevent aspiration he needs to sleep at a 30 degree or more angle. Propping pillows and not being able to change positions at night has been difficult and uncomfortable for Jody. He is waking up with back pain as a result. We’ve heard mixed talk about the follow-up plan regarding his swallowing issues. He might need speech therapy to give him exercises to strengthen his swallowing muscles or they might just wait and repeat another swallowing test (yes, #6!) after he’s been eating on his own (which could in itself fix the problem). For right now Jody is really glad to be able to drink again, even if it is just 10cc’s at a time.
At this time Jody is not allowed to be left alone. Because he is immunosuppressed, and we are in cold and flu season, we continue to be careful about germs and exposing him to outside people. It’s hard to know when and how to let up on this. As far as I am concerned, for the first time in five weeks I am mask-free! This is both liberating and terrifying at the same time. I often wonder if I will ever kiss him without fear of killing him by spreading some bug I may not know I have. I realize everything is quite fresh right now and that I will probably relax about it in due time, but for now the fear of germs and bugs is still very real.
I wish I could say we’ve been living it up here at home and having the time of our lives, but it simply wouldn’t be true. While the routine is going fine, Jody has not been feeling well. He has spent much of the week sleeping and is having a lot of intermittent yet intense abdominal pain. Eating makes the cramping and bloated feeling worse, not eating is causing him to lose weight that he shouldn’t be losing. It’s hard to encourage him to eat, knowing the pain it will cause him, yet its hard to see the skin hanging off his body knowing it will only get worse if he doesn’t eat. It wouldn’t surprise me if they start using his feeding tube again for extra nutrition but Jody is strongly against this.
Bowel obstruction could be the cause of all the abdominal pain Jody is experiencing. Today the doctors called in a prescription for him to do a colonoscopy-type bowel prep that should clean out his system completely. Tonight he is feeling a little better but he also hasn’t eaten so it’s hard to say if the clean-out worked or if its his empty stomach that has him feeling a little better. This has been an ongoing issue for Jody and it is very frustrating and overwhelming for him. He has had moments where he sincerely wondered if all of this (transplant) was even worth it. I know that deep down he knows it was, and that he will get better, but we (you and I) can’t belittle how hard this major surgery was on him (and anyone else going through it). It’s so much easier for me to say, “Of course it was worth it!!!” because I’m not the one experiencing it first hand. For this reason I chose to stay quiet, but it didn’t keep me from shouting those words in my head. I know that in his heart Jody knows transplant was worth it; he’s got a wife and two little girls to live for and to watch grow into young ladies.
Speaking of little ladies. On Tuesday our family of four will finally be back together. Our youngest daughter had a recent live vaccine so she wasn’t allowed to be in the same house as Jody for a two-week period afterwards. It turned out to be a smooth transition to home only having the oldest with us because she is in school for eight hours a day, and is also a little more independent. I’m excited to have everyone at home under one roof, but I’m not gonna lie, I’m a little nervous about it too. Please pray that God would give me an extra dose of patience and that things would go smoothly.
We will be heading back to Hopkins for transplant clinic on Wednesday. This will be a weekly thing for the time being but the visits will gradually be spaced further apart. Hopefully by this weeks appointment Jody will feel better and won’t need to stay; that possibility is never very far off. Please continue to pray for Jody’s ongoing recovery and especially for the GI issues he’s been having. Your words of encouragement do wonders for the soul. It is so touching to know that people (still) care and so I hope you will take the time to continue uplifting Jody with your words/comments. Until next time… thank you for reading.