We are back home. Home is a beautiful thing! We arrived a little after 9pm last night; exhausted but thankful and happy to be together and home. Lee was longing for his own bed and the relief from being roused at all hours of the day and night from an already fitful sleep to be weighed, have his vitals checked, PICC line flushed, and more.
MONDAY: This morning, Dr. S (one of 3 of our transplant doctors) was doing rounds in the hospital with his entourage that included a Fellow (a physician who enters a training program in a medical specialty after completing residency), a visiting doctor from another state, his P.A. (who manages patients while in hospital), our hospital RN, and our transplant coordinator (also an RN.) Dr. S is our favorite transplant doctor: young, energetic, fully vested in the health and well-being of his patients and their caregivers. He entered the room saying, "You could've just sent a postcard, you know. Did you really need to come to the hospital?" That got a smile out of both of us.
He told us that we could be released today, that Lee's vitals were stable and the IV drug, Milrinone was working. Milrinone works by making the heart beat stronger and by relaxing certain blood vessels so that the amount of blood that is pumped from the heart is increased. This may help with symptoms of heart failure. It is a short term solution to allow Lee to stay at home instead of in the hospital while waiting for a transplant. The hope and prayer is that Lee can stay on this drug until a donor heart becomes available. Eventually the Milrinone loses its efficacy. At that point, if a heart is not available, the next step would be major (open heart) surgery to implant an LVAD (Left Ventricular Assist Device.) The LVAD is a mechanical pump that is implanted inside a person's chest to help the weakened heart ventricle pump blood. In Lee's case, the LVAD surgery is more complicated because the doctors would first have to remove his mechanical aortic heart valve, replace it with a porcine (pig) valve, and THEN implant the LVAD. The doctors at the Mayo would really like to avoid that extra surgery. We would too, obviously!
Status 1B Dr. S went on to explain that Lee would now be a Status 1B (see previous post: THE LIST) on the heart transplant list. He said, "Don't leave town" and "tell your kids to come down here for Christmas." This was the point when all the emotions and stress of the past few days (months/years?) decided to show up in the form of tears ... and a little sobbing. I cried to the doctor (and all the other people in the room) that I had a "plane ticket for Christmas Day to fly to Seattle to be with MY baby girl who is having her first baby." I can't even begin to describe how many ways my heart was being pulled at that moment. Of COURSE I didn't want to leave Lee but I also did not want to miss experiencing those first precious moments of new life and the miracle of my child becoming a mother.
Dr. S was immediately by my side, patting my shoulder (while the Fellow doctor hurried over with a box of kleenex) and saying, "Oh, you must go for the birth of your grandchild. Babies bring JOY and are a blessing. You need some joy in your life right now. It will be a wonderful thing for you. You must go and not only that, you have my permission to feel NO GUILT. Do you need that stamped on your forehead?" Well, of course, that led to even MORE blubbering and I believe I said that I probably WOULD need it stamped on my forehead.
When the room finally cleared, my dear, sweet husband looked at me and said, "It never even crossed my mind that you wouldn't go to Seattle to be with Katie and the baby." Oh MY ... I AM blessed.
Being a Status 1B will require us to be "transport ready" at all times. Phones on, backup plan in place, people who will know where we are at all times, staying within a 2 hour range of the Mayo Clinic. When we receive "the call" we will need to be on our way to the Mayo Clinic (which is about 80 minutes away during perfect traffic conditions) within 15 minutes (Mayo protocol.) So many things to think about: a "go bag" always in the car, a full tank of gas at all times, a SHORT list of people to notify who will in turn, notify others, keeping Lee well and free from colds, flu, etc, trying not to worry about the financial impact, keep the Lord at the center of ALL of it.
How long? Amazingly, here in our area, an approximated, average wait time as a Status 1B is 3 to 6 months. It could be only weeks or it could be many more months. That is both wonderful and frightening. As we joyfully anticipate renewed vitality and health for Lee, we have the humbling, grateful, terrible knowledge that some other family will be making a sacrificial offering of their loved one's heart to that end. Knowing that it will be a young person (40 years old or younger) is especially poignant. We do not take lightly, the gift, the giver, or the responsibility of living a life honoring to the giver. A friend recently said, "I've been shedding tears for all those like Lee who are waiting... for another to die so they may live. Such an amazing analogy to the lost sheep and the Good Shepard!"
So, next on the agenda will be to recruit a group of people who would be willing to help us. We will need a support system, not only for the time I'm gone to Seattle but to be available to be "on call" for us. There will be times when I need to be more than 10 or 15 minutes from home (and Lee). We will need people who live close by to be willing to potentially drop everything and pick Lee up and head to the Mayo Clinic in north Phoenix where I will meet them. We will need people willing to perhaps stay with Lee or take him somewhere and to be willing to just go to the Mayo at, truly, a moment's notice.
We will need support after transplantation. The first few months at home, after transplantation, Lee cannot be left alone in the home for even a few minutes. We will need someone to stay with him while I take a walk (they tell me, I must remain healthy to be of best help to Lee) or go to the grocery store. So many things are swimming around in my head at this moment.
When the room finally cleared, my dear, sweet husband looked at me and said, "It never even crossed my mind that you wouldn't go to Seattle to be with Katie and the baby." Oh MY ... I AM blessed.
Being a Status 1B will require us to be "transport ready" at all times. Phones on, backup plan in place, people who will know where we are at all times, staying within a 2 hour range of the Mayo Clinic. When we receive "the call" we will need to be on our way to the Mayo Clinic (which is about 80 minutes away during perfect traffic conditions) within 15 minutes (Mayo protocol.) So many things to think about: a "go bag" always in the car, a full tank of gas at all times, a SHORT list of people to notify who will in turn, notify others, keeping Lee well and free from colds, flu, etc, trying not to worry about the financial impact, keep the Lord at the center of ALL of it.
How long? Amazingly, here in our area, an approximated, average wait time as a Status 1B is 3 to 6 months. It could be only weeks or it could be many more months. That is both wonderful and frightening. As we joyfully anticipate renewed vitality and health for Lee, we have the humbling, grateful, terrible knowledge that some other family will be making a sacrificial offering of their loved one's heart to that end. Knowing that it will be a young person (40 years old or younger) is especially poignant. We do not take lightly, the gift, the giver, or the responsibility of living a life honoring to the giver. A friend recently said, "I've been shedding tears for all those like Lee who are waiting... for another to die so they may live. Such an amazing analogy to the lost sheep and the Good Shepard!"
So, next on the agenda will be to recruit a group of people who would be willing to help us. We will need a support system, not only for the time I'm gone to Seattle but to be available to be "on call" for us. There will be times when I need to be more than 10 or 15 minutes from home (and Lee). We will need people who live close by to be willing to potentially drop everything and pick Lee up and head to the Mayo Clinic in north Phoenix where I will meet them. We will need people willing to perhaps stay with Lee or take him somewhere and to be willing to just go to the Mayo at, truly, a moment's notice.
We will need support after transplantation. The first few months at home, after transplantation, Lee cannot be left alone in the home for even a few minutes. We will need someone to stay with him while I take a walk (they tell me, I must remain healthy to be of best help to Lee) or go to the grocery store. So many things are swimming around in my head at this moment.
TUESDAY: Lee was supposed to be released from the hospital on Monday, but coordinating insurance with home healthcare is harder than getting a heart transplant, it seems! One of the nurses told me that their job included training us to be patient. ha! Believe me, we've had lots and lots of training in that area.
After several false starts and many, many phone calls and discussions with case workers, social workers, home healthcare staff, hospital staff ... the home healthcare nurse finally arrived at the hospital at 5pm. There was a mound of paperwork to go over and sign, then the training on the newest addition to our life: The CADD pump & PICC line care and procedures. My nurse friends will know all about this stuff, but for me it is new and somewhat intimidating, but we're up for the task. Lee is so good at the electronics part of this and is such a good, calm patient that is makes my job easy.
Guido: The nurse from the home healthcare provider, told us that we needed to name our new little on-board buddy: The CADD pump & IV bag & tubing. They provided a bag with shoulder strap. It is to be with Lee at ALL times. The nurse said that naming it, makes it more a part of the family. In honor of our grandson, Noah's love of the CARS movies, we named our pack Guido. Guido got a new carrying pack as soon as we arrived home. My backpacking, "camel" bag is the perfect size and weight and Lee thinks he looks quite charming sporting Guido on his back.
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| Papa Lee with Guido, his new, ALWAYS there, pal. Notice the bruising on Lee's neck? |
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| All cleaned up and ready for a new dressing. |
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| All secure and ready for action! |
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Wow. Thanks for sharing your journey. You both are amazing examples of His strength through you. Praying for you right now!!
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