Except for when he does.
I struggle to read my last blog post. I was so emotional writing that, feeling very nostalgic about fair week and thinking back on the year before and how thankful I was to have a healthy and happy baby this year. Literally crying painting her perfect, not peeling Toes. Only to eat my words and watch my living hell unravel and happen all over again just a week later. As I watched Haven’s body begin to deteriorate as it did before I suspected that was what was happening again. We spent all week in and out of the doctors, they said it was strep (she had a negative strep test) but I knew it wasn’t. The redness began taking over but again they said it was part of the strep rash. When I picked Haven up from the autism center one of her therapists who spent time with us at the hospital last year said Taylor her body looks like when she had staph, which is seriously what I had been saying all week! That gave me the extra nudge I needed to make our voice heard. We left and went straight to the doctors. I adore our NP, she’s been through so much with us, after looking her over she said it looked like the start of Staph Scalded Skin again. My stomach hit the floor, instant nausea, I could feel my entire body begin to shake. This could not be happening again. We could not do this again. I could not take this again. God does, in fact, give you much more than you can handle at times.
We received two antibiotic shots that night, and the next day met with our Infectious Disease specialist and were admitted. We were hopeful at the thought of taking Havey home on home health care. Being Trapped in a hospital for weeks is not ideal for anyone let alone a child with Autism and Extreme PTSD. But coming home with a PICC and having to be her 24/7 nurse was seriously so exhausting and intimidating. With having four treatments a day, most in the evening, night, and early morning sleep was few and far between. It was also terrifying being the one monitoring her body that just kept getting worse and worse. I have so much respect for our nurses and doctors because this made my anxiety so much worse. Watching her burn and peel again was too much for this mommas heart. Haven is without a doubt the fiercest, strongest, bravest tiny human I’ve ever met. We had a lot of very hard moments. She got so down at times she would just sob in sadness, her autism got the best of her at times and she would just rage. Haven thrives on routine and consistency and being cooped up in the house for so long really took its toll on her (and me, holy stir crazy 😫)
But we made it. 3 weeks off our routines and work, 2 weeks being hooked up for hours upon hours every day. We are beyond drained. Mentally, emotionally, financially, and physically just drained. I’ve struggled to keep my mind right at times. It’s all just bullshit, honestly. As childish as it sounds, It’s just not fair. I’ve devoted everything to Haven, I do everything in my power to keep her healthy and safe and do the right thing and this keeps happening. And every single time it falls on me and is such a set back in our lives. This job is not for the faint of heart. As bad as the bad times have been though we’ve had some really awesome people helping to keep us going. Thank you, thank you, THANK YOU to those who have been here for us. You helped make this very hard time a little easier ❤️
Because Haven had this before she should have been resistant to it but that clearly wasn’t the case. Instead her body was resistant to treatment and took much longer to respond than we thought it would. Haven’s body is in the final stages now. She’s still sloughing everywhere, her feet are peeling and coming off in chunks, but the parts that were the worst in the beginning are healing now so the end of this is in sight and we will be able to begin to fix our very battered mind, souls, and hearts. Haven is still immunocompromised and very fragile right now, any sickness Is a major threat to her. In the next couple of weeks we will begin the process of testing Haven to try and figure what is wrong with her. It appears she has an autoimmune disorder but we will have to find out what one and how to treat it. This will not be easy as getting blood draws are nearly impossible with her, but it is vital in getting the answers we so desperately need.
Thank you to all who sent kind words and prayers, y’all are amazing ❤️ Xoxo Taylor
You inspire me daily!!!