I am sitting bedside watching Paul sleep this morning and I am feeling all sorts of things. To say that the last week has been a roller coaster would be an understatement. We have dealt with depressed function (still no change), pleural effusion (getting better but still has the chest tube), chylothorax (seems to have resolved), and low oxygen saturations (still down). Yesterday Paul’s kidneys took a bit of a hit from the massive amount of diuretics he is on- there was talk of returning to the PCICU- and then this morning he made a miraculous recovery. Truly- his BUN and creatinine levels (that assess kidney function) were 42 and .6 (very high) yesterday and are now 23 and .25 (normal) today. In recent non-health related news- Paul made history this week as he became the first ever resident in the new cardiac acute care unit at VCH. It was a BIG honor and the room is amazing! All of this to say we are headed to the cardiac catheterization lab tomorrow at 10 am to determine why he’s not recovering. They suspect he may have collateral vessels that are essentially tributaries pulling blood flow from it’s normal path. These are easy enough to fix by coiling them off or essentially killing them. There also could be pulmonary artery narrowing, which they can’t do anything about now but can balloon open later. The cath will also give us a better idea of the level of function, the pressures, and help us get a good look at his heart. Our prayer is that the cath shows NO depressed function and that the culprit of all of this can be fixed easily. We don’t want any scary data from this procedure like dysistolic dysfunction or clotting or worse overall function or severe narrowing.
Think of the scariest roller coaster you have ever been on. Now imagine that this roller coaster suspends you upside down and backwards with your legs hanging in free air 1000 feet above the earth. That’s what this process feels like sometimes. The worst of it is- you never really get to stop the roller coaster and land once again on solid ground. You can enjoy the ride, some sections are much calmer than others; many provide the most fun you have ever experienced in your life but the ride never really ends. I want to take my son to a park. I want him to experience the beach. I want to watch him play with other children without fear that he’ll get sick. I want to show him animals in the zoo and worry about what outfit he’ll wear for Easter Sunday. I want him to ride a horse and play little league. I want to tell him to “brush it off” when he falls. I want him to walk, to eat, to love and live just like other kids. Alas, this process is not about what I want- its about what he needs and what God wants. I often wonder the purpose for all of this- why did this happen in our family? Why our child? What can we learn from this and what are we teaching? Why were we chosen to be Paul’s parents? Why does Paul have a heart condition in the first place? How is it that his condition happens to be the most severe one that is still compatible with life? Will I have to grieve his life before I die? My gosh, I hope not. I don’t know these answers- I may never know these answers and yet at the root of all of this is my sweet baby boy for whom I will always have love and hope and with whom I will always live on this ride- one foot in front of the other- one day at a time.
Some days its hard for me to talk to God- to really ask for help. Knowing that each of you has “got this” and so does He is always so helpful to me. When we can’t pray- you are praying for us. When we don’t want to be alone- you have come running. When we need to get out- you come scoop us up. When we don’t want to eat- you make us.
In 2010, I completed my dissertation ( I love research). The major question I asked was about the degree to which a national mental health programming initiative reduced stigma and impacted young people to seek help. My hypothesis was, of course, that this award winning program had a favorable impact- it did, sort of. Yet, something interesting happened during qualitative collection and analysis of open ended responses. I learned that what really impacts stigma reduction and help seeking behavior is relationships. Help seeking happens because of one’s own ability to be vulnerable, and, in turn, the recipient’s ability to respond in a favorable manner. The last line of the paper that I wrote was “the most powerful tool we have in our arsenal is each other.” Each other. That is what sustains us, that is what gives us hope, that is what makes our lives worthwhile. One another…Thanks for being the “other” for our family. Please pray that Paul pulls through. We will keep you posted.