The Hard Truth

My daughter had a trach placed on October 4th of last year. I knew it was going to be a big transition, but I didn’t realize the toll it would take on me personally and our family. I’ve always handled transitions well and have been able to stay level headed, but that 75 day hospital stay broke me. The trauma I endured watching my daughter get a tube put down her throat and a huge team of medical professionals come running TWICE to our room to stabilize her was just too much.

Having to choose to place a trach was yet another traumatic event. She lost the ability to speak. She now requires 24 hour care since the trach is her only means to breath and it can easily become clogged. She’s dependent on a ventilator to breathe. I can longer just take a fun trip with her. We have to have 2 caregivers everywhere we go. We have to bring her emergency trach supplies in an airway bag, her suction machine, and her travel vent. She uses an HME that humidifies the air around her, but in the dead of winter you can imagine how uncomfortable that is for her. We cannot be gone long. Her stamina is extremely low and she sleeps a lot now.

On top of that, we came home with high hopes that we’d find night nursing, but we’ve had no success, so I’m on leave from work and have been since September 2nd.

I used to fake answers when people would ask how I’m doing, but I can’t do that anymore. I’m broken. Dark thoughts seep their way in on a weekly basis. My daughter is a fighter, but she’s getting tired, and I’m terrified of losing her. I can no longer deny that reality.

I don’t have a social life, and I’m not a good friend. I don’t have the energy or mental capacity to maintain more that a couple friendships, and some days I can’t even maintain those 2. We are fortunate to have day nursing and supportive family, but the stress is felt fully when they aren’t here. Things are getting more difficult which means less and less people are comfortable caring for my daughter, leaving my husband and I to take off work to fill in the gaps.

I appreciate people who reach out and check on us. Coming home from the hospital was just the beginning of this journey. We’re still wading in deep waters and doggy paddling our way through life.