First off I’d like to address the title of this post, “Heart on the edge” is referring to my heart, not Hana’s. The last 24 hours have involved a lot of time spent at the hospital at Stanford, both planned but also unplanned.
Over the last week we have been potty training Hana which I will say has been much harder than I thought but also much more possible than I thought. I’m not sure how those two thoughts coexist in my brain, but they do. With one of Hana’s medications causing GI upset and a sudden and real urgent need “to go” I wasn’t sure if we would have success. But I was determined and she needs to learn some time and honestly I really think she is very ready. The only reason I’m saying any of this is because we pretty much haven’t left the house during potty training week.
This is why I was very surprised when Hana threw up late yesterday afternoon. We just haven’t been anywhere to pick up a stomach virus. So I thought it was a fluke. Then two hours later she puked again and I started to fear she really was getting a stomach virus. So I called in and was very surprised that they wanted us to bring her to the Stanford ER (no rush but they definitely wanted her to come in). I really thought they would just check in with us over the night to see how much she continued to vomit and if she could keep her medications down. But no. So we quickly packed a bag of necessities just in case we had to stay a couple days at the hospital.
What complicates all of this is Hana already had a Cath Lab/biopsy scheduled for the next morning. I had already talked to the Nurse Practitioner about our pre-op instructions and they always check in to make sure Hana has no symptoms of being sick.
At the ER they get us back to a private room and the cardiology fellow comes to do an exam and an echocardiogram. I might also mention that since her last vomit Hana sucked down 6 ounces of Gatorade and was clawing at Paul’s sandwich like a starving animal. She also was climbing all over the chairs in the waiting room.
After the echocardiogram, the attending heart transplant cardiologist walks in and does an exam and looks at the echo and talks with us. Hana is looking very well and I almost wished she’d act a little sick so I don’t seem like I was being dramatic with her episodes of vomit. They explain again why they wanted Hana to come in – dehydration can be dangerous for her, not being able to keep anti-rejection medications down can be dangerous and also, most scary, unexplained vomiting can be a sign of heart failure or rejection.
Ugh. This is our reality of the world we live in. It doesn’t mean that Hana is going to ever experience heart failure or rejection and I don’t live that way, but it does mean that it is always a possibility that must be considered. My heart is on the edge every time I again must consider this again. Why am I wasting time potty training when we could be out and about experiencing life? But I don’t live life this way, nor do I take it for granted like everything will now be “normal” and we never have to worry again, that would be denial. It’s a balancing act and my heart is always on the edge.
After getting blood work in the ER and some time spent observing Hana after she ate and drank, everything looked perfect and they let us go home with strict orders to return right away if she threw up again. They were kind of pushing to just admit Hana overnight just in case she kept vomiting they could give her IV fluids and it would save us a trip back to the hospital in the morning for her Cath Lab/biopsy, which they really didn’t want to cancel (she can’t be dehydrated for the procedure). But Paul and I really didn’t want to spend the night back in the hospital. So, at 1am, we went home.
We got home a little after 2am and after a few hours of sleep Hana and I left for the hospital at 7:30am. Things when smoothly for the preparation and during the actual Cath Lab procedure. I went back to the PACU afterwards and Hana was still out cold. They decided not to do the usual echocardiogram post-procedure because she had just had one the night before (the risk was low of a complication they might find on an additional echo).
One of Hana’s transplant Nurse Practitioner’s came to the PACU to do an exam, as usual. Hana was just starting to wake up. Unfortunately, the NP heard a gallop – an additional heart sound. Hana has had this before, with her original heart and it is often(? Or usually?) a sign of heart failure or rejection. I felt cautiously crushed. Now this gallop on top of unexplained vomiting was starting to look concerning, despite everything else looking good.
My heart is on edge. So the NP is trying to get a hold of the attending cardiologist from last night and in the meantime another transplant cardiologist is headed over to listen and the NP talks about moving us out of the PACU and getting an EKG and an echocardiogram anyway. Hana is wide awake and goofy in her post-anesthesia bliss and she is mostly concerned with eating nearly four cherry popsicles and watching cartoons.
The cardiologist arrives and does an exam and listens carefully. The gallop is gone. She explains that sometimes anesthesia wearing off can cause this or something like that but I don’t listen too hard because I’m too busy feeling relieved. They review the echocardiogram and a bunch of other things (like the pressures in her heart that they measured in the Cath Lab which were great) for awhile and again ask me to explain the vomiting episodes. But in the end everyone feels very confident and relieved that all is well and the cardiologist just reminds me that I can always call any time night or day for any reason even if it’s just, “something just doesn’t seem quite right.” Tomorrow we get the biopsy results that measure rejection.
As we are getting ready to leave, Hana’s primary transplant cardiologist shows up just to check in to see how we are doing after all the craziness. I always appreciate that. He reminds me that sometimes little kids just throw up for reasons we never know. Yup. I’ll take it as a fluke (especially because now I don’t have to bleach everything in my house to kill the germs).
Now I’m tired and Hana was really tired. We took off her diaper that we went back to for all this and I think she was happy to be rid of it. It’s like she’s just picking up where we left off in potty training. I’ll take it, happily.