We spent a lot of time talking about Eddie's fluid balance today. For cardiomyopathy patients, monitoring and controlling fluid intake and output is super important since too much fluid in the body makes it more difficult for a weak heart to pump effectively. In fact, the very first thing the cardiac ICU nurses do during rounds is to tick through the list of all positive and negative fluid flows (In: NG feeds, blood transfusions, IV medications; Out: Urine, chest tube drainage, bleeding) and then we set specific goals for what Eddie's net balance should be during the day.
When his fluid balance is too high, Eddie gets a fast-acting diuretic like Lasix. When he is dry, we may give him boluses of saline to bring him back in line. Being too wet or too dry has dramatic impact on how his Berlin pump fills and empties so we keep a very close eye on his status. Similar to how we walked the clotting/anti-coagulation tightrope last week, it is a real balancing act to ensure Eddie is in the best place possible for an eventual transplant.
So one of the reasons why the topic came up again today was related to drinking. You may remember that Eddie was drinking thickened juice last weekend before his tamponade episode pushed all oral nutrition options off the table. Now that he's in recovery, it's about time for Eddie to dip his toes in again and "fluid balance" reared it's ugly head. Because of their ongoing diuretic regimen, cardiomyopathy patients are often thirsty and Eddie is no exception. It is hard to watch him beg for something to drink and not be able to get anything in the immediate term.
Our doctors and nurses have been very flexible in letting us "bend the rules" from time to time, and I think they are doing their best to keep Eddie healthy. One of the other challenges comes in the form of his ability to swallow properly and keep oral liquids out of his windpipe. I wasn't at the hospital today for his speech therapy session, but it sounds like the results were "inconclusive" which will lead to further studies before giving him the full green light on drinking. In the meantime, they are allowing Eddie to drink small amounts of thickened liquid again which is much better than nothing.
Otherwise, today was a pretty good day. His chest output seems to be increasing, but it is still primarily serous rather than bloody. Berlin wasn't filling perfectly, but ok. Good perfusion and warm all over. Most notably, he is more animated every day and is talking more and more. We spent 15-20 minutes this morning playing with several of his puppets (including his favorite, the Chicken Beaver . . . don't ask . . .) and he was laughing freely. So good to see the smiles and hear the laughter that we love.
Turning back to Easter, forgive my personal indulgence, but I wanted to share one of my favorite devotional poems from my favorite devotional poet, George Herbert. Few people read Herbert anymore and I can understand why . . . it's religious, difficult to understand, and, well, 400 years old. However, I am always impressed by its (and his) humility. This was a man who was born into an aristocratic family, close friends with John Donne, was a favorite of King James I, and yet rejected material and secular rewards and pursued the quiet life of a parish priest and poet.
Herbert's pattern poem "Easter Wings" is remarkable not only for its novel conceit (Wow! A poem shaped like wings!), but for the way each stanza closes, managing to find not sorrow in adversity and trial, but rather enlightenment and joy ("Then shall the fall further the flight in me / Affliction shall advance the flight in me.") While I don't relish the idea of walking the difficult path ahead, I do find comfort in knowing that we'll arrive at our destination more enlightened than otherwise.
And finally, I thought I'd include a link to a sermon that has brought me great comfort since I heard it a few years ago. Jeffrey R. Holland is a former president of Brigham Young University and of the American Association of Presidents of Independent Colleges and Universities. He has received the Torch of Liberty award from the Anti-Defamation League. And he now serves as a member of the Quorum of the Twelve Apostles of the Church of Jesus Christ of Latter-day Saints.
While Elder Holland's talk clocks in at over 18 minutes (well worth the investment), I was struck by his comments that start around 12:18.
[Jesus'] solitary journey brought great company for our little version of that path—the merciful care of our Father in Heaven, the unfailing companionship of this Beloved Son, the consummate gift of the Holy Ghost, angels in heaven, family members on both sides of the veil, prophets and apostles, teachers, leaders, friends. All of these and more have been given as companions for our mortal journey because of the Atonement of Jesus Christ and the Restoration of His gospel. Trumpeted from the summit of Calvary is the truth that we will never be left alone nor unaided, even if sometimes we may feel that we are.
As we approach this holy week—Passover Thursday with its Paschal Lamb, atoning Friday with its cross, Resurrection Sunday with its empty tomb—may we declare ourselves to be more fully disciples of the Lord Jesus Christ, not in word only and not only in the flush of comfortable times but in deed and in courage and in faith, including when the path is lonely and when our cross is difficult to bear.
Our family has passed some very difficult days and nights recently, yet never have we doubted the care of our loving friends and family. You have been saviors to us in so many ways and we feel your hands, your tears, and your words as vicarious blessings from our Exemplar par excellence. You are His hands, and we are profoundly thankful for it.