My Aunt had to have surgery to put stints into her bronchiole's to keep her airway open. Relapsing Ploychondritis is destroying the cartilage in her body. Her trachea is collapsing. That was a really long day. Waiting, waiting and then more waiting. When the surgery was finally done and we were able to see her in recovery I was shocked at what I saw. My beautiful Aunt looked like she had been in a bar fight. Two black eyes and a busted lip on top of the black bruise that was quickly appearing on her arm from the I.V. and bp cuff. It took a collaboration of my cousins (her 2 kids), her best friend and my other Aunt to get her settled into her room and to get her prescriptions figured out. When I got home at midnight I was drained but wide awake. I had to process what happened today to my loved one, my family.
See, when I was diagnosed she is the one that I could be straight with. Before her Lupus got the better of her she was an ER Trauma Nurse. I could be real with her and she got it. She is the one who would tell me like it was, the good and the bad. She is the one that would answer all of my 'stupid' questions. For me to be able to be her strength was an honor but also a very real visual of how hard it is on the caregiver. The go to person. The ones that never leave our sides. To sit on the other side of the bed rail is a hard seat to sit.
I am so thankful that as of right now she is doing very well and was so excited to tell me that for the first time in years she is taking deep refreshing breathes and to make it even better, without her oxygen!
The day before my Aunts surgery my Grandma was having her emergency colostomy reversed and the huge hernia that had formed around her stoma repaired. The 4 hour surgery turned into 7 hours and 2 units of blood. When I walked into the ICU to visit with her I was shocked to see that she was intibated and in a lot of pain. I felt the pain of her disappointment and I could see in her eyes all the things she could not speak. Stop the pain! Then from across the room I saw Grandpa. Sitting, watching, waiting, hoping.
It takes unbelievable courage and determination to go through IBD, surgeries, recoveries and all the procedures. But it takes unbelievable patience, strength and love to sit and watch. To only be able to hold the hand of the ones we love is a hot seat that I have found more uncomfortable then laying in that hospital bed.
So after a week of wearing the shoe of caretaker I have had the time to think about how it must have felt for my husband to watch UC in all of its glory steal his wife away bit by bit. How horrible he must have felt, how helpless. I sapped every ounce of strength from him to get me through, but he never left my side.
We finally found a camping cot that fit into small hospital rooms. No more sleeping on the floor!
I am thankful beyond words for all the support that I received from my husband and my family and friends. Where would I be without them....
I am happy I don't ever have to find out!
* my Aunt and Grandma are both expected to make full recoveries :)