Today’s update is going to be a bit shorter and to the point.
Yesterday, Thursday, we got the news about the next steps. Currently we are ramping up the Sildenafil (Viagra), trying to see if that will have an effect. On Saturday or Sunday we will have another echo to see if that has had the desired effect. If it does, then we will probably be discharged with that and then start talking next steps/long-term with the doctors from there. If the Viagra doesn’t work, the next and final drug we can try is a continuous drip IV-only drug. That one would likely be beneficial to Kate and we could go home with that, even with it being IV administered. They do make little mobile pumps even for active 3 month olds. If we get sent home with that drug in play, we automatically start the process to get put on the list for a heart transplant.
It’s a very interesting, scary, and frightening thing to have to think about, but at the same time, it may likely be the only option we have. Kate’s heart isn’t having trouble pumping, it’s having trouble relaxing so it can fill up. The heart muscle itself isn’t working properly as muscle. If it was a pumping problem there are lots of options to try. With our issue, there’s not that many options.
We learned the above on Thursday. Audrey learned it in the morning and kept it to herself until I arrived in the afternoon from work. We’re still processing and discussing. At her age, Kate is actually at a better spot in life for a transplant than even when she gets a few months older. There are more donor hearts available now due to things like SIDS. There are fewer kids competing for hearts as well at this age. One thing we are struggling with is asking, is the Viagra a bandaid on a wound that will heal itself or is it a bandaid on something fatal that will not repair itself? Do we wait and let the heart muscle grow and mature, hoping it will get better? Or do we think it’s going to keep getting worse, as it has? If it’s not going to heal itself, we may want to start trying to get on the transplant list sooner rather than later.
It’s been quite the gut-punch. We’re working through things, waiting to see how Kate reacts to medicines, but wanted to share.
On a happier note, we got to go outside today so I’ll leave you with a happy pic from today!
Hugs, hugs and prayers from a distance.
Dear Audrey and Dave and baby Kate,
Our prayers are many for you – for strength and healing. May God and his angels be always at your side.
Love Aunt Kathy and Uncle Tim