Hello to all of our dear friends and family,
Today seemed like a good day to bring you an update. We had a semi-crisis when my gastrostomy tube dislodged and fell out of my stomach during the night. With a direct opening from the skin into the stomach we were concerned about the risk for infection. Additionally, the doctors had said if it came out completely and I couldn’t slide the tube back down the tract, we should go to the ER. The problem is that the tract begins closing internally within hours. So, 4am saw us departing for the hospital. We were quickly triaged and put in a room. The doctor said the procedure was too complicated for the ER and that it needed to be done by the Intervention Radiologist Team. The procedure was scheduled for 11am. Oh my goodness! Because of the “rush” to preserve the tract, it was decided to get immediately underway without the use of sleep or pain meds. In all honesty, it was excruciatingly painful as parts of the tract had already made a soft closure and the doctor had to push through them to open the way. Examination of the old tube showed that the internal balloon that holds the tube in place had burst. Ugh! After 30 minutes of pushing, pulling, sweating, and biting my tongue, we were finally done with the procedure. The doctor at one point when the pain was so bad suggested we let the current tract close naturally over a few weeks and then re-do the complete new surgery as if it was the first time. He saw the tears well up in my eyes with the thought of starting from scratch again. He said he would try one more time and that now would be a good time to pray. The tube, with a firm push, popped through the closed part of the tract and the x-ray machine showed it was in the proper place. More tears from me - tears of thankfulness.
Many have asked how the tube is working for me. It has been great at reducing my gastric distention which has taken pressure off of my intestines and they are starting to work some on their own! This has been a complete surprise to all of us! We are so thankful for this progress and thankful for your prayers. The gastrostomy tube however, also drains large amounts of stomach fluids which has left me dehydrated and my electrolytes out of balance. In order to try to keep balance, I have to go to the Infusion Center at the hospital 2 days a week where I get fluids, potassium, and electrolytes through my IV (PICC line) over a 6 hour period of time. While it is a big time consumer of my week, I am building great relationships with the nursing staff and have had several opportunities to talk with and pray with other patients getting chemotherapy infusions. There is no cell service in this part of the hospital so it is a sweet blessing of time to just read and write and rest.
Other updates: we are still tracking my cervical traction results and will be ready soon to send that data to Dr. B in New York to see if I need more cervical fusion. Right now the results are mixed on how well traction helps my heart rhythms, blood pressure, headaches, nausea and vomiting, and leg pains. On the orthopedic side of things, daily physical therapy and daily occupational (hand) therapy is helping to strengthen the muscles around my joints and I am having a lot less joint dislocations. They are a dedicated team of specialists and are allowing me to be more active without as many injuries.
We were blessed recently to go to Atlanta where they were having the 2019 Fire Rescue International Conference. Steve was a conference speaker on From Prevention to Recovery: Leadership Principles for Addressing Firefighter Suicide. Steve’s parents, brother, and sister-in-law were able to drive down for the conference. My parents, aunt, and uncle were also able to spend a day with us. We rounded out our conference stay with an evening concert to see Thomas Rhett. We had a great trip and it was so nice to see family.
Just a reminder: New social media news!!! The Brooks are giving Instagram a trial run. How many ways can this go sideways with the non-technologically inclined Lee trying this? (Thanks for all the help Jena!) We hope to encourage, inspire, and even draw a few laughs with brief posts and pictures in between the more lengthy and medically technical blog here on Post Hope. Our prayer is to encourage others to live life with intention, passion, and satisfaction against the background of suffering and its sobering realities. Praying it spreads love and joy! Follow us @leeandstevebrooks
If you are not on Instagram you can find us at www.instagram.com/leeandstevebrooks
As always, thanks for checking in on us.
Lee and Steve