I don’t remember how much of what happened last fall I posted here—not much, I think—but I’m sure I haven’t written about this yet. But, after my last post about how Grace has so much anxiety, it seemed fitting to write about how I came to find out that Grace was experiencing such severe mental health issues.
Last December, Grace was admitted to the hospital with four separate severe infections. The finger that had sent her to the hospital for almost a week in November had not improved, and she had added osteomyelitis in her right big toe, prepatellar bursitis in her left knee, and cellulitis in her left big toe. (That one was caused by a giant splinter, approximately 8mm x 2mm, that had lodged under her toenail. She couldn’t feel it.) Because she had been getting strong medications for so long for her left ring finger, she was admitted and received frequent doses of several strong antibiotics per IV. She slowly, slowly improved, but not enough to switch to oral meds. The only way she would be allowed to go home was with a PICC line (peripherally inserted central catheter, or IV that starts in her arm and ends in her heart).
To say that Grace was terrified of the PICC would be a gross understatement.
Given her history of nonchalance with IVs, we stressed to her that it was of utmost importance for her not to pull this one out and to keep it very, very clean, since it went straight to her heart. “It goes to my heart?!?!?!” was the response. She knew that any line infection would be immediately life-threatening, since it would automatically go to her heart and therefore her entire bloodstream.
Usually, PICCs are inserted on awake patients. There is no need for general anesthesia; most people are able to have them done with just a mild sedative. So, our plan for placing the PICC for Grace was to give her Versed (a short-acting sedative that causes the person to forget what happened) and have the PICC placed in her existing hospital bed.
Side note: I was worried about this plan, because her existing hospital bed was FILTHY. Bits of food and play doh and toys and every other kind of germ in the room had entered her bed. It seemed like placing the PICC on a dirty bed was just asking for problems for a kid who can’t fight bacterial infections.
Anyway, the time came to do the PICC. The child life specialist was there to help soothe Grace’s nerves. The nurse and doctor were there to administer the Versed and monitor things. When the PICC nurse came in with her ultrasound machine (they track the line as it goes in to make sure it does not infiltrate the vein and to make sure it correctly enters the heart), it was time to begin.
The first problem came when the nurse had a nasal spray bottle of Versed.
Grace hates having things put up her nose or in her ears. Those are two places where it’s extremely difficult to get her to cooperate; usually, she has to be held down for routine ear checks or nasal swabs. But Versed only comes in a nasal spray, apparently. Grace was terrified of the nasal spray. Eventually, because everyone was waiting and had other patients to see that day, several people held Grace down to administer the Versed.
Every other time she’s had Versed, and there have been quite a few, she has just acted drunk—loopy, out of it, but carefree. This time, though, was very different.
Grace had been thrashing and shouting, “NO, NO, NO!” as the Versed was administered. After it was done, we all let go of her, but she continued thrashing and shouting “NO!” It works quickly. She was thrashing so much that there was no way they could insert the PICC; that requires stillness. Eventually, it became clear that she was not going to calm down, and the PICC nurse and doctor and floor nurse left the room. The child life specialist and I stayed and continued trying to calm Grace down.
She was having a massive anxiety attack, but was too “drunk” to be reasoned with. She kept pushing her hands to her face and shouting, “No!,” even when there was no one in the room but me and Kara from child life. (Kara is an absolute angel, by the way. It takes a special kind of person to do child life and she is amazing.)
We kept trying to distract Grace and get her hands off her face. I pulled out my phone and started showing her pictures. “Who’s this?” I would ask, and she would pull her hands off her face long enough to look at the picture, then answer and put her hands back.
The true enormity of what we are dealing with became clear when I would show Grace pictures of herself. “Who’s this?” I asked, showing her a photo of herself in full makeup, looking absolutely gorgeous. “There’s no one in that photo. That’s just a picture of air. Nothing else.” Shocked, I said, “Gracie, that’s YOU,” to which she responded, “It’s nothing. That’s a picture of nothing. Just air.”
It happened again and again when I would show her pictures of herself. “Who’s this?” “Jackson.” “Elliot.” “Dad.” “Air.”
Before her Versed-induced anxiety attack, I knew things were getting bad with Grace, but I had no idea the extent of her low self-esteem. I had no idea she hated herself so much. It was a sad awakening for me.
At some point, Kara and I had a few moments alone in the hallway (maybe Grace fell asleep? I don’t remember). Kara and I discussed the urgency of Grace’s need for mental health help. She gave me some resources, including a referral an agency I could call to set up in-home mental health help for not only Grace but the rest of us, too. I think I called them from the hospital, or maybe once we got home.
(That particular agency only works with children on the Colorado Medicaid Children with Life-Limiting Illness Waiver. Getting Grace switched to the CLLI waiver is a whole post unto itself… the change finally went through about 2 weeks ago, after several months of trying. And now the agency isn’t accepting new patients. #Facepalm)
Anyway, Grace’s terrible Versed-induced anxiety attack was in December. It is now the following September and we still do not have good mental health help for Grace. I’ve asked my counselor friends and Gracie’s therapists for referrals, but for some reason none of them work out. It’s like there’s an invisible brick wall between us and help. I have no idea why. I firmly believe in the universe providing things when they’re needed and not a moment before, but it seems like this is really, really needed. Why isn’t it materializing?
Maybe, between this post and the previous one, something will happen now. I have gotten a couple more referrals in the past couple days, and will call them Monday. Keep sending those thoughts and prayers that something will happen!
My sweet girl has been through so, so much in her short 10 years. It’s no wonder she’s got PTSD from all the forced medical procedures, all the bedside surgeries with no anesthesia, all the doctors appointments and hospital stays and therapies and EVERYTHING. I hope we can help her get through this latest problem. She deserves all the goodness in the world.