I didn't know that the weird random health indicators that Liv had been showing everyone over the past couple of weeks weren't something as simple as allergies paired with a tummy bug or that her Fontan was really causing slowed digestion now three months later. But I did know that even though everything was weird and counter indicative of one another, the overall net was that she wasn't herself and something serious was going wrong before my eyes. My quick hit list of offenders ranged from leaky valve, kidney failure, multi-organ failure and of course that Liv's heart had very quickly become a train wreck.
When I made the appointment this past Tuesday for Wednesday morning to bring her in to Cardiology, I knew it was likely to mean an admission. By the time I got her to clinic, her swelling/edema was showing in her legs and actually getting worse pretty quickly. The radiology technician got the EKG done and started the echo but we weren't more than 10 minutes in when I knew that the results were not good. Facial expressions say a lot and the one I was looking at said Liv was pretty sick. It came as no surprise to me when I met up with our Cardiologist in the hall and he gave me the option of trying to get lasix into her at home or going aggressive and admitting her for IV fluids and starting Digoxin. Here at Hope is where she needs to be for the moment and hopefully this is a quick tune-up.
But there have been many lessons learned and they won't be soon forgotten. This admission to Hope ultimately took three visits within the last couple of weeks and things like inflammation on Liv's incision from the Fontan were likely the first indications that her fluid retention was stretching the new skin making her mess with the surgical site. The vomiting/reflux was the beginning of fluid building up in her abdomen making it hard for her to have enough room to keep food in her belly. Even though she was constantly eating, it was likely that it wasn't at volumes to keep her full for long. The disrupted sleep wasn't from anxiety of her most recent cardiology appointment instead likely from the discomfort of her tummy by said fluid retention. Making her cry it out at night instead of going in to comfort her was likely causing more strain on her already weakened heart.
As for the medical piece of the picture and what's going on with Livster: either her mildly leaky valve became a more serious leak in recent weeks leading to the fluid build up and putting strain on her heart making for more fluid accrual; or her heart started to get tired and let fluid build up to the point where the valve started giving way like a dam overrun by water and it led to the fluid. Either way, it is the same, she has too much fluid volume in her body and her heart has slowed. The lasix are in and doing their job, lots of wet diapers over here. Digoxin is a heart med to make every pump and beat of the heart more efficient and Liv will be on it for a while in hopes of perking up her heart. She is doing great, already back to her normal size, still some fluid leftover in those thighs but eating like a horse. I'm sure now that there's more room in that abdomen, she's making up for lost time. Sats are 95-98 this morning up from a low of 92 yesterday. She is begging to be broken out of here and I can't say I blame her. Even thought I think we all felt fairly well educated on her and that heart of gold she has, I do believe that we've moved on to another level.
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