April 1st of 2018 was Easter Sunday. It was only the second time I left Scarlett’s side while she was still in the PICU and Sheldon stayed with her. I came home to attend a hockey fundraiser for Scarlett and to see my other two children that I was really missing. Sheldon called me late on Easter Sunday and told me Scarlett was not doing well. She had another large pulmonary hemorrhage and had to be placed back on the oscillator for the third time. Thankfully, this would be the last pulmonary hemorrhage caused by her lupus as her doctors decided to start Rituximab for the vasculitis in her lungs. We were told that there was no evidence of it’s efficacy in children as it had usually only been used in adults. There was a lot of hope in this medication helping her as we were running out of options. Thankfully it did.
Tonight, I was giving Scarlett a bath and her baby brother Will was in the tub with her. Scarlett is so sweet when it comes to Will, they really have a special bond. She was giving him kisses and said she remembered Will in “her hospital.” She told me that she woke up, Will and I were there and that we never left her. I told her yes mommy was always there and when she woke up Will was waiting to meet her. Scarlett got real quiet for a few moments and put her head down. I asked her what was wrong. She said it made her really sad to see me cry. She asked me why I was crying when she was in the hospital. I can only think of one time I was very visibly upset in front of Scarlett when she was awake. When she developed endocarditis in May and showered clots into her lungs, at that time she was completely off of sedation. Blood was coming from her trach and Scarlett had a panicked look in her eye as she was deteriorating quickly. She was then placed back on the oscillator for the fourth and last time. I know she remembers it because she has told me before she was scared when it happened.
Last week we were in Fargo for a fundraiser for the Children’s Miracle Network. While we were there I saw my friend Janna. I met Janna when Scarlett was in the PICU and Janna’s little boy was in the hospital battling leukemia. He is currently doing well (yay Henrik!). She is the only friend I made outside of Sanford staff as I never really strayed too far from Scarlett’s room. Last week she gave Scarlett a special doll she made for her. After her son’s ordeal she started to make dolls to help children cope and be more comfortable with the new changes to their bodies and learn about their illness. She a nurse herself and is very knowledgeable about the medical aspect. Her dolls have central lines, ports, tracheotomies, g-tubes, colostomies, and more tailored to each child, which is completely amazing! Scarlett has been utterly fascinated by this doll and of course named her Scarlett. Scarlett’s doll has scars, which we call angel marks everywhere that Scarlett does. She has a syringe and pretends to draw her blood. I hope that practicing on her doll helps Scarlett with her PTSD. Scarlett has to get labs drawn at least every two months and it has become more and more traumatic for her. I wish I could take all the pokes for her.
Scarlett continues to amaze us all with her fighting spirit. She takes her medications twice a day without much complaint. She loves to practice being a doctor on her siblings and now her Scarlett doll. I hope she will remember less of the bad from her PICU stay, and maybe just hold onto the good memories of her friends at “her hospital.”