This weekend we are celebrating a milestone. Last year at this time on June 8th 2018 Scarlett’s tracheotomy was removed. It was a very exciting day for our family and everyone that had been taking care of her for the previous 4 months. On February 21st 2018 Scarlett was flown to Sanford Children’s in Fargo after experiencing pulmonary hemorrhage and going into cardiac arrest. She was there almost two months before she was able to get her trach and g tube placed because she was too unstable to go down to the operating room. She spent 100 days on ventilator support, 43 days on the oscillator and 57 days on a conventional ventilator. Finally after 100 days her doctors took her off life support and 8 days later the PICU intensivist removed her trach.
We were told she would most likely be discharged on a home vent. I did her trach cares and changes while she was still in the PICU so that when she came home I’d be comfortable doing them by myself. I didn’t like doing her trach cares, only because I felt like I was giving in to the fact she was going to come home with the tube in her neck that she hated so much. Scarlett’s trach made her even more nauseous when she was being weaned off sedation. She has told me countless times she did not like it and it scared her when she couldn’t talk. Deep down I felt this hope and maybe some defiance she wasn’t coming home with a trach. It served it’s purpose. It helped her get better. It was a tool in her survival, but once she no longer needed it I wanted it gone. At the time I felt that if she was coming home with a trach then her respiratory crisis wasn’t over.
There were four amazing intensivists that rotated in the PICU and three of them told me she would most likely need home support. There was one intensivist who was adamant she would not go home on a vent. He was so sure Scarlett would recover. His words to me were that it was a tool she only temporarily needed to get better and I held on to his words. Needless to say Scarlett’s recovery amazed them all. Dr. Storm got to be the lucky one to remove her trach. He is an older gentleman with white hair and beard at the time. A few weeks after Scarlett was discharged home she looked at me very perplexed one day and asked “Mom, why did Santa Claus take out my trach?” She was serious. It was funny. She has since realized Dr. Storm is not Santa Claus, but in her defense that can be confusing for a 3 year old.
Today I asked her what she remembers from the day she got her trach out and she replied “that all my friends helped me to get better.” That’s right they did! We continue to be thankful for all the milestones Scarlett keeps meeting. One year trach free! (Pic is of the day she got her trach out.)
My Child Has Lupus 