Lauren's heart transplant team came in this morning with some news we could not believe. We have been prepping to go home with a drug called dopamine to help Lauren's heart. She has a Hickman line in place, and they have been using it to make sure everything is safe and working well.
Ok here it comes...we were told that Lauren cannot go home with dopamine, reason there is a drug shortage. Dopamine is made in Puerto Rico, so because of the hurricane, there is a drug shortage. Are you kidding me???
Now on to plan B. They are trying Lauren on a new drug called Milrinone IV. They just started it, but Lauren needs to be watched very closely, so her blood pressure does not drop. At this point they are checking it every 15 minutes.
How's your day going???
It's 12:13 a.m. Friday morning and I am still trying to wrap my head around to the fact that my daughter Lauren needs two organ transplants. A heart and a kidney. Living in the hospital again isn't any easier than the first time around when Lauren needed her heart transplant. The only thing is, I understand so much now, if that is any comfort. Lauren's hospital room is like a revolving door these days. Not only do we see the heart transplant team but now we have a kidney transplant team. Everyone has been so sympathetic, caring and listening to all our questions. So happy to be here, I know Lauren is receiving the best care in the world. Also we know most of the nurses and doctors, so that takes out some of the scariness of what's happening.
The plan we were told today was, they took Lauren off the IV Lasix drip, which is a potent diuretic to help rid the body of fluid build up. She has been on that since she was admitted. They took her off the IV drip to give her Torsemide pill form. Torsemide is a drug that's a diuretic (water pill) to help prevent fluid build up so we can go home. They want to monitor Lauren's fluid with the Torsemide for a couple of day to make sure she is not holding onto fluids. If it works then we will be able to go home. The doctors told us they really want to see us go home for Christmas but, (they is a but), they told us that most likely Lauren will be re-admitted into the hospital to wait for her transplants. Lauren needs to be watched very closely this time, reason being if Lauren heart was to get weaker we do not have the luxury of a LVAD, the bridge to transplantation. You cannot place a LVAD in a transplanted heart.
I would also like to thank everyone that has offered to donate one of their kidneys for Lauren. That is the most incredible offer anyone can give. When the doctors told us about Lauren needing a kidney, I without even thinking told them take one of mine. But unfortunately needs to receive her new kidney from the same donor as the heart. Receiving both organs from the same donor reduces rejection, being from the same body.
So Lauren today will be officially listed as a 1b on the donor list. To become a 1A, Lauren would have to be in the hospital with a PA line in. With Lauren's blood type a B and small body size, we were told wait time is shorter than say she was type O blood being it is very common. Last time Lauren's wait time was 9 months, with 5 month recovery time.
I am sitting here looking around the room and thinking can we do this again. Absolutely, we just need to stay positive. We have been here for a little over 2 weeks now and inside I am going crazy. I know Lauren is. But I keep telling her we are all in this together. The whole family is going to get through this together. I know someday I will figure out why God is putting my family through this not once but twice, I hope.
To have to live through it once is hell, but to be faced with a double transplant again is unspeakable. I have joined quite a few transplant support groups over the years, giving comfort to those waiting and saying to myself "don't want to be in that situation ever again". Well, it's happening...
Praying Monday we go home, I really miss my Kooper. Pain in the ass he is, but he's my baby. It's been close to 3 weeks I haven't seen him. It funny, my son put us on a video chat so Lauren and I should see him. We would yell his name and he would look around, like where are they.
Thank to everyone that is leaving comments, Lauren and I love to read them. I have been selling quite a few books here, people are buying them for Christmas presents.
If you would like to know what it is like to live waiting for a heart transplant, click on button below to get your copy.