Monday morning’s cardiac clinic went amazingly well. Labs, echo, and a visit with the nurse and doctor ended with an enthusiastic and cheerful “see ya next week!” But I’m most amazed at the conversation that happened in that cold cardiac clinic room #2. Sarah’s electrolytes all looked good, calcium, potassium, renal function…all good. Her albumen level is now at 3.8, all on her own! That’s an all-time high (for as long as I can remember) since she developed protein losing enteropathy (PLE). It’s 0.5 higher than last week, and only 0.2 less than the low end of normal. It’s absolutely miraculous to us, and we are simply amazed that her body is responding so well to her new heart. It gives me just one more reason to love our heart donor and his/her family, for giving her a chance to have a life WITHOUT constant swelling, diarrhea and vomiting. We hoped so very hard that a new heart would heal her intestines and get rid of the PLE, but it wasn’t a guarantee. It’s still not quite time to say an ardent “goodbye” yet, but we are so very grateful that it looks like that awful disease is definitely packing its bags!! We haveSarah has a liver MRI this Thursday, another clinic visit next Monday, and a biopsy the next Thursday. Dr. Everitt said that after her biopsy, if everything comes back looking perfect she doesn’t see any reason why we can’t move appointments to every other week! Then she added, “Since you’re used to driving back and forth to Salt Lake so much anyway, I don’t see why we couldn’t send you all the way home between. How would you feel about that?” We were beyond words. I hope she read the smiles on our faces correctly. It should have been an excited, resounding YES! But neither of us could quite get the word out….for a while. I find myself absolutely amazed at the very real possibility of being home together as a family again only three months after Sarah’s transplant. That’s three months sooner than we expected, on the short end! …it’s just so…amazing!
I find myself feeling many emotions as I think about the wonder of it all. I’m very excited and nervous at the same time. We were so excited when we thought we’d be together again by Christmas, and then Halloween sounded wonderful. Can’t believe we might actually get some summer time at home together! I’m a little nervous to take her home, but know that cardiology is only a phone call and 2 1/2 hours away, so things will be ok. I’m a little concerned about how it’s going to work for us all to be together again too, and how Sarah will do without 100% parent attention, but I’m sure with help from others, much gentleness and patience, and perhaps a little counseling, we’ll all get used to being together and eventually find a new “normal” and rhythm. I hesitate to even say this, but I’m also struggling a little with feeling like I’m waiting for the other shoe to drop. This journey has just been so complicated and “roller coaster-esque” so many times, I find myself having a hard time truly believing things will continue on this path. However, I also believe very much in the power of positive thinking, and that having unwavering faith and gratitude brings more blessings. So I’m trying to ignore my natural tendencies to doubt, and stay focused on being faithful, grateful and amazed.
The strongest feeling I have right now is immense gratitude. Gratitude to Sarah’s donor and donor family for the incredible gift of life they have blessed her with. Oh, how I love them for giving her something that only they could give…a perfect heart that was a perfect match, and a second chance at life. Gratitude to our Heavenly Father for knowing best what we needed, even when we got frustrated and impatient. For giving Sarah exactly what she needed and when she needed it most, and the courage and strength to endure what she’s had to go through for her second chance. Gratitude to our amazing team of talented surgeons, doctors, nurses, techs, and therapists that have played such a vital part in this journey. Gratitude to our family and friends that have fasted, prayed, and worried with us throughout her whole life, and so much more intensely these past six months. Just so much gratitude…. Keep up the prayers of faith, hope and gratitude to carry us through the next 9 days!!