For those of you who may still be waiting for an organ donor or who are in recovery and have not yet gone to clinic, I have some tricks of the trade for you. I don’t know what clinic is like for other organ recipients, but for us, it includes lab draws to determine his FK levels and basic health status, an EKG, an Echo, and a wellness check with the transplant staff. This can take a while and be very uncomfortable, especially for little ones. I know for N, after being stuck with a needle and having blood drawn, he has to be stripped down in a cold room on a hard table and be weighed and measured. Then they take his vitals, which can be overwhelming for him with the blood pressure cuff and Doppler machine. And along with the blood pressure measurement comes taking off the tape from his lab draws, which can be painful in and of itself. Then he has to stay naked (well, stripped to just a diaper) for his EKG and Echo, so he’s still cold, but now he’s covered in stickers and gel. Not a fun day for a kiddo. Not a fun day for anyone, really. So here are some aces to keep up your sleeve for when you finally get to join these parties.
The key is to set yourself up for success from the onset. Chances are you have to commute at least a little ways to get to the transplant center or medical plaza. For us, it’s a five hour drive. Before N went to daycare, my mom lived with us and took care of him (she’s a saint!!!). She typically made these trips with me so my husband didn’t have to take off work. Now he and I are the ones who will be going. Mom and I are both early risers, so we like to have the 8:00 am appointment, which allows us to get on the road earlier to head home. Plus, it helps with the timing of his lab draws, since they need a trough reading and we do early doses. But since the appointment is so early, we drive up the evening prior.
If you are staying overnight, here’s my double whammy of a tip: stay in the same hotel every time you go. We signed up for the hotel’s rewards program, so we’re just racking up the points for this hotel chain, because we are still going to clinic every three to four weeks. This will eventually translate into free stays. Cha-ching! Plus the staff get to know you, and it makes special requests (like a crib, or a first floor room not near the elevator) more likely to be taken into consideration. The other thing this does is build familiarity with your little one. It makes being away from home not seem so much like being away from home. Routine is crucial for increasing kids’ comfort levels. If they feel comfortable where they’re staying, they’ll sleep better, you’ll sleep better, and everyone will have a much better day at clinic. Our hotel even has a pool and free breakfast, and being able to grab and go from a free buffet is another way to start the day on a high note. And once N learns to enjoy swimming, the pool will just be another way to tire him out for a good night’s sleep, or make a more positive association with being in Gainesville.
Most transplants are conducted at major medical centers. Therefore, there are usually several associated multidisciplinary medical plazas. Since these tend to generate a lot of patient traffic, major hotel chains in the area will typically offer a hospital rate, as will apartment complexes. You can get a list of participating venues from your social worker. Whenever I book our hotel for clinic, I always call and reserve our room over the phone rather than online, because then I can make sure we get the hospital rate. This easily saves us about forty dollars per visit. And that adds up quickly.