An update from PawPaw Mark:
The past couple of days has been filled with positive steps of progress: right chest tube and peritoneal catheters were removed by Dr. Burkhart yesterday, her little bladder catheter was removed this morning, most of her heart meds have been stopped and her vitals have been very good. Feedings have been increased and seemingly tolerated well….
and then, another step back, another thorn, another complication has raised it’s ugly head, another wrench in the gut, another fly in the ointment, yet one more blasted diagnosis:
chylowhat? seriously? What the heck is that?
Another “diagnosis” to put on Audrey Bunny’s thickening chart.
Happens in about 2-10 out of a thousand babies who have had thoracic surgery. Apparently a tube called the thoracic duct, that is practically invisible, is damaged at the time of some during thoracic surgery. That duct normally collects and transports large volumes of lymphatic fluid from around the gut and dumps it back into the blood stream for use in the body. It has a lot of important stuff like fluids, lipids, and immune globulins. When it is severed, those fluids and goodies leak into the space between the lung and the chest cavity called the pleural cavity. This is not a good thing. It must be removed. It must heal or be fixed.
They will try to manage this with modifications to her stomach feedings and do more of her nutrition support by IV methods: TPN. Instead of getting that chest tube out in a day or two, now it could be weeks. As much as I hate to type these words, it is possible she could require another surgery! It is possible her little chest would need to be reopened. Those words sent her bedside warriors into a bit of despair, sadness, frustration, anger, you know, words you’ve read here before. How much can baby Audrey take? She has fought so hard and just when she gets close the top of a hill on her valiant climb, a mudslide.
It’s the Fourth of July-Independance Day, a day to gather with friends and family, to remember our countries foundation and the sacrifices and battles fought to birth a new nation. In time families should be grilling Oscar Mayers and sipping cool beverages, having a swim and lighting firecrackers and Roman candles. I remember complaining about the unremarkable fireworks show we viewed last year on the 4th. Looking out the 9th floor of the PICU is not likely to yield a better show in 2014. The petty things I complain about.
Instead, Baby Audrey is now fighting on a new front in her war to gain her own independence from the remaining breathing tubes and drugs and oxygen and cold feedings from a syringe and pressure sores on her little body. Independence from lying on her back for the past 10 days needing to be held, wanting to be swaddled and held like babies should be by a mom and dad. Embraced and rocked by great parents that love her deeply and long to comfort her. Sometimes it’s just more that the human spirit can take. Why dear God? She is so sweet, so precious, so innocent. Please dear God. Please Holy Father. We beg of you Jesus. Please heal baby Audrey. Please rock her for us. Please send angels to sing her sweet lullaby’s.
Spending these countless days and hours here at Children’s provides clear and often painful insight into the sufferings of so many that the world never sees. Congenital anomalies, injuries, near drownings, cancer, childhood illnesses that fill volumes of books. The orchestra works tirelessly day and night, hour after hour, year after year behind shiny facades of big tall buildings even on the 4th of July to do their best to play a sweet tune, to bring harmony to these precious little ones that grace our lives. They sacrifice their family time on these family days because things happen on days like this. Searching for an open restaurant last night leads to a search for one still open, calls to ask “how late do you serve”? Here, as in all of these places we call hospitals, places we love to hate, the answer is: we never close…….
They do all they can to heal the wounds, realign the misaligned, destroy the tumors, comfort the pain, and fight with all their humanly might against the enemy that would take away these precious gifts, steal the joy, rob a childhood, and break a family’s heart. Oh this thing called humanity. The ache in the heart. The flooding of tears. How much can these families take?
Again we are broken and sliding a bit down the hill. A tough but fragile little girl is fighting so hard to make it back. She needs a break. She needs another miracle. She needs new specific prayer that this chylothorax is healed without surgery and does not lead to even more setbacks. That her chest can stay closed as it should be. That her mommy and daddy will be given the strength to withstand the arrows being shot into theirs souls with each new diagnosis. Pray dear warriors, pray if you will. Please stay the course with this young struggling family. We are grateful beyond words for all who are lifting these dears ones up in your prayers. May God bless you for your love and support.
We thank God for the victories He has granted thus far and praise him for her life. God is good and faithful and loves baby Audrey more than we can imagine. We place her in your loving arms again today dear Lord.