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December 6, 2020, written by Mama
Today has been blissfully quiet--truly nearly silent--in our PICU room. Thomas has remained well sedated without break-through pain. Through various adjustments to medications and through the continual removal of built-up fluid (3 liters to work through!), Thomas's heart rate and blood pressure have gone to really nice numbers. The drainage from his WoundVac has slowed nicely and is what normal surgical drainage should look like, no longer like frank blood as during the emergency. Thomas continues to have labs done every few hours and to receive transfusions of platelets and cryo (Cryoprecipitated Antihemophilic Factor) because his body is requiring so many coagulation factors inside his body. His body is using coags faster than he can make them.
Even though on the eve of St. Nicholas, Thomas and I were on our 18th day in PICU and even though Thomas had not one but two surgeries that day, our 12-year-old daughter independently put together our St. Nicholas Day tradition in the evening, wrapping the gifts I had ordered on Amazon and had shipped to the house. She remembered the shoes, candy coins, oranges, the St. Nicholas decorations I keep in a bin in the attic, and the books we read to the littles that night. One gift I ordered was a whole-family gift of one of those beeswax candle-making kits. This was when I actually thought I'd be home from PICU by St. Nicholas and that we'd make candles as a family over the month. When Mary was setting out the gifts, she saw that our godmommy, who rushed into town this weekend to help, did not have a gift, so she stayed up late, opened the candle box, made Godmommy a beautiful Christmas candle, and sealed up the box (which still has lots of supplies) to put with the gifts. So, even Godmommy got a gift on St. Nicholas' day! To my mom friends who are slogging through exhausting feast day and holiday traditions year in and year out, I'm telling you that this PICU experience has showed me that your work will bear fruit. Maybe it won't be until your children are grown adults in their own homes, but maybe it will be when tragedy strikes and someone has to grow up and mature a lot faster than expected. Mamas, your work making beautiful family traditions MATTERS and I encourage you to not grow weary in well doing, but keep creating truth, beauty, and goodness in your homes.
We have spent time today making the PICU room more personalized with truth, beauty, and goodness since our best hope and dream at this point is that we are going to be here for a long time because that means our precious son has survived and is recovering.
Without a word from me, the children decorated a miniature, faux Christmas tree for my room. I won't pretend they are saints, so apparently there was a bit of bickering during the decoration process, causing Daddy to suggest that instead of talking, they pray one Memorare for Thomas while placing each ornament and that they did. The tree is now on my bookshelf in a spot where Thomas can see it when he is one day able to open his eyes.
My husband mounted a crucifix (with heavy-duty two-sided tape!) where Thomas can see it. This beautiful crucifix was given to us by Fr. Fergusson, FSSP, when he visited us and said Mass in our home several years ago.
The white board is covered in the names of groups that are praying for us. I mounted a beautiful "Jesus, I trust in you" sign made by an artist-friend. I mounted the bouquet of paper flowers from the Fidelis girls. My Advent calendar and electric candles remains in the corner.
Our surgeon stopped by with beautiful hand-drawn pictures of Thomas's anatomy (1) after his tumor removal, (2) after his surgery removing the dead organs, and (3) the goals for after his reconstruction. I believe he spent nearly 90 minutes with us discussing anatomy, possibly reconstruction methods, expectations for functioning and eating over Thomas's life, and what the next weeks may hold. It was a very productive meeting.
There are many lab results and scheduling issues at play on Monday, so we will probably find out Thomas's surgery schedule only a few hours in advance. We suspect it will be Monday afternoon or evening, or Tuesday morning.
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