Last Friday's cardiology appointment was everything I noted in making lemonade post and just a little bit more like perhaps the part that Olivia's heart not responding to her new meds at all was an indication that she was in complete heart failure and the only solution was likely a transplant. Fast forward to this past Wednesday when Brian, Liv and I met with the transplant team here at Lurie's Childrens Hospital. (Note: I said HERE). The staff was great, they did another echo which looked as poor if not worse than the one done at Hope last week.
Then we met with some of the transplant doctors and went over the very basics. To our dismay, they wanted her in for a cath this coming Monday and said with all likelihood they would be admitting her thereafter on an IV drip of milrinone to move her up to priority 1A status on the transplant list. I tried to suggest discharging her after the cath so we could celebrate Thanksgiving in all it's glory with the families and then re-admit her. They laughingly told me that really wasn't a great move and she would be better served getting her in sooner rather than later. So off we went to start the first round of pre-transplant tests. Chest x-ray strapped to this crazy little medieval torture device, some lab work and then a holter monitor to see if Liv's V-Fib rhythm might have re-presented and that be the cause of the right ventricle's demise.
After all that and lots of tears from Olivia and begging to go home, we tried to grab dinner and avoid downtown rush hour to which Olivia presented with her very first all out tantrum in a restaurant. Packing up food as quick as possible, we threw everything and gently placed Liv in the car to get on the road and sit in traffic!!! Lots and lots of traffic all while I was battling a headache that made me think I was on the brink of an aneurysm. When I ultimately decided to get off the highway to head to my parents for relief, the phone rang and it was the hospital calling with an update. Liv's BNP (marker for heart failure) levels were high - like 30x the normal level of a heart healthy person. Words from the doctor's mouth "if we had gotten this test back while you were still here, we would have kept her". "So what time can you guys be back tomorrow morning, because we really want her inpatient and on meds before we do her cath on Friday and get the transplant listing officially underway".
Part two coming in a bit
Then we met with some of the transplant doctors and went over the very basics. To our dismay, they wanted her in for a cath this coming Monday and said with all likelihood they would be admitting her thereafter on an IV drip of milrinone to move her up to priority 1A status on the transplant list. I tried to suggest discharging her after the cath so we could celebrate Thanksgiving in all it's glory with the families and then re-admit her. They laughingly told me that really wasn't a great move and she would be better served getting her in sooner rather than later. So off we went to start the first round of pre-transplant tests. Chest x-ray strapped to this crazy little medieval torture device, some lab work and then a holter monitor to see if Liv's V-Fib rhythm might have re-presented and that be the cause of the right ventricle's demise.
After all that and lots of tears from Olivia and begging to go home, we tried to grab dinner and avoid downtown rush hour to which Olivia presented with her very first all out tantrum in a restaurant. Packing up food as quick as possible, we threw everything and gently placed Liv in the car to get on the road and sit in traffic!!! Lots and lots of traffic all while I was battling a headache that made me think I was on the brink of an aneurysm. When I ultimately decided to get off the highway to head to my parents for relief, the phone rang and it was the hospital calling with an update. Liv's BNP (marker for heart failure) levels were high - like 30x the normal level of a heart healthy person. Words from the doctor's mouth "if we had gotten this test back while you were still here, we would have kept her". "So what time can you guys be back tomorrow morning, because we really want her inpatient and on meds before we do her cath on Friday and get the transplant listing officially underway".
Part two coming in a bit
Whoa. That's a LOT for you guys to take in! I'm so very sorry! I haven't commented much here but I've been following you guys as my HLHS'er, Chase, is just a few months older than Miss Liv. My thoughts and prayers are with you over the next few weeks as you continue to process all of this.
ReplyDelete((heart hugs!))
mom2lo
That is so much to take in. My son is a year post transplant right now, so I completely understand. Will be keeping an eye out for part two. If you ever want to chat transplan mommy to soon-to-be transplant mommy, I'm here!
ReplyDeleteMy boy is 3 years post transplant. We go to Lurie's children as well. He had his first 2 open heart at Hope Children's.. It's a lot to take in, it can get overwhelming but it will be easier. Olivia is in good hands. I can't say enough good things about the transplant team at Lurie's. if you have any questions or just want to talk, I'm here.. Prayers and lots of good thoughts your way :)
ReplyDeleteLisa, this is SO MUCH to take in. But you know Olivia is a fighter. We love you guys so much and will be praying for a smooth cath tomorrow and a heart quickly for Miss Livvy....xoxo
ReplyDelete