Well you hopefully read Monday’s update. We had a heart catheterization. yesterday to gather more data and try and determine next steps for to deal with Kate’s hart issues. The cath. went well and they got lots of data. The aortic arch they repaired back in May during our original visit is doing great with no issues. The mitral and aortic valves aren’t as bad as the last echo’s indicated. They decided to start her right away on a couple drugs though and unfortunately, we need to be inpatient in the hospital for the ramp-up on the drugs. This was a rather unexpected surprise as before the procedure started we talked that it would be a couple weeks before anything was decided. We had a basic overnight bag packed but have had to do some quick work to get the necessary stuff for a stint at the hospital.
Emotionally, it was a bit of a shock to be told we are heading back to the old unit we were in. It’s been an awesome two months experiencing life with a “normal” newborn. To be back in the hospital, dealing with things like the every four-hour checks, people coming in all the time, they all came back and reminded us how much we didn’t like hospital life.
From a technical side, they are trying a couple different drugs. One is a Beta Blocker to relax the heart and the other is a vasodilator to dilate the vessels. This last one is Viagra. Yep, our 3 month old baby girl is on Viagra:-) The beta blockers seem to be really making Kate lethargic and very not-her-self.
Wednesday, yesterday as I’m writing this, they did another echo and that showed there was no change from pre-surgery. The drugs hadn’t done anything. We got pulled off the beta blocker and the Viagra got increased. Today there is going to be a big cardiology pow-wow to determine next steps.
It’s frustrating to see no progress and I can tell the doctors are frustrated too. We were hoping to be running a charity 5k supporting the Ronald McDonald House this weekend, then heading up the North Shore and camping at Tettegouche State Park but it looks like we will get to spend the weekend at the hospital again.
That’s about all I can get down at this point. Thanks everyone for your support.
Audrey and Dave
Hi Dave and Audrey,
So sorry to hear you have had a set back. Kate looks so healthy and I know you have been active with her. I really cannot find the words to express my empathy for your situation. Going from a “normal “ newborn life to a necessary hospital stay is indeed a physical blow for Kate and an emotional one for you and Audrey. I know writing your journal is difficult at times like this, but please keep the news coming. You are all in mine and John’s thoughts and heart. Brave Bear has brave parents as well.
? Jan
Dave and Audrey,
So sorry that Kate is having some trouble. I have you all in my thoughts and sending many good wishes your way.
She’s such a trooper. So sorry that she (and you two) are having to go through this. Hang in there and let us know if there is anything that we can do for you, not matter how small or silly it may seem
keeping you all in our prayers.