My dearest Sonzee,
Today is one of the hardest days to write about. It isn't like any of the upcoming recollection posts are easy, but there is something to be said for finalizing a decision and moving forward because otherwise you are just stuck, which would be how it was today. Today a year ago I dropped your siblings off at school and drove over to FBC and sat in the parking lot. I was torn on whether I should work today. If it wasn't the flu that you had then I wouldn't have panicked over potentially exposing other medically complex kiddos. I was really conflicted on what to do, so I reached out to Miss Jaime and she agreed that I should stay home until we knew. Phew! That removed a lot of the guilt I felt over not delivering speech services, but the safety of other children in your position was something I have always felt extremely strong about. You know my feelings on "allergies", so the potential of something deadly walking into the halls of FBC on my clothing made me feel sick.
I drove home. Meena was having an evaluation at Madison Elementary, so I checked on you before I picked her up to take her. You were in bed the entire day. Today was one of the last days I would get into an insurance argument over medication of yours not being covered. (PS: They finally called to tell me it was ready to pick up 2 days after you died). I had little to no patience to deal with anyone trying to tell me "no you couldn't have the new nasal rescue med" that Dr. Jarrar had just prescribed. I spent literally hours today calling every pharmacy in the valley and speaking with both Aetna and Mercy Care. FINALLY, after Dr. Jarrar changed the medication to a different nasal rescue med, PCH worked it out.
Today a year ago your father deaccessed your port and forgot to put in the heparin. (Ironically, it would not really matter, but more on that in a few days). He worked it out with Nurse Amanda, and eventually reaccessed you and gave you the heparin and deaccessed you again. I am so sorry for all of our mistakes that resulted in you having more pain. Your lips were so dry, they were bleeding and cracked. It didn't make sense, you had been "sick" before (just never actively dying). By the afternoon the lightbulb clicked in my mind to call the dispatch health service Corrine's mommy always talked about to come and give you a flu swab. Aba didn't understand why it mattered, me, the type A lady over here NEEDED to know. I might have lied to the woman on the phone and told her you had every symptom of the flu because when I initially said you didn't have any, she said you wouldn't be given the swab. I said you were home with aba and maybe things had changed. I texted Aba and told him what to say when they came.
By 3pm with a lot of fighting between aba and myself, and discussions with hospice Aba said we would be admitting you to hospice. I relaxed a bit but didn't know what it really meant except that we knew you needed someone to help support our decisions and you in any way possible. By 4pm the decision was reversed. I wonder what our social worker thought of today and the next 3 days. I know you had to be aware of all of the chaos occurring. I apologize to you about that. It had NOTHING to do with you...it was aba and I and our disagreement over the same outcome but not being sure how to get the same outcome with our different ways of thinking. Ultimately, we both just wanted the best for you, whatever it was.
You hadn't peed much today, we started to increase your fluids...that always worked historically. But, historically, you weren't dying. Your swelling got worse over time. I was on sibling duties today, driving everyone to their activities after school. By 6:30 Aba called to tell me it wasn't the flu. I remember being in the car, I remember the immediate lightbulb that went off in my mind. It took me an entire 2 minutes to replay a conversation with Dr. Wendy in my head from when you were a baby and I had asked her, "how would I know if you were swelling and dying"...she said "you would know", "the fluids have nowhere to go and they just flood the body". I knew what we were dealing with. It wasn't the flu, you weren't sick (but I would continue to go down a list of potential maybes).
By the time I got home from the last activity, it was around 7:15pm I walked into your room and asked everyone what the dispatch health person said about your rash. No one understood what rash I was talking about. It was on your cheeks, your hands, your legs. It came out of nowhere, obviously between the time Nurse Paige left and the dispatch health people left. Dr. Kelly crossed off all of my ideas. We were left with my only option. You were officially dying.
We went back and forth with hospice multiple times. It was horrible. I felt so lost, so alone. I was too afraid to talk about it on the CDKL5 support page because years earlier a similar situation happened and it turned into an awful ordeal. People don't understand. In their defense, they just can't until they see it themselves. I didn't want to be told: "I was giving up". It was obvious this was not my decision. This was your body communicating it was tired, it was sick, it was unable to heal, it was shutting down. Your father couldn't wrap his brain around it. To be honest, I couldn't either, BUT someone had to be your voice, someone had to respect the situation, plus, I would have forever to deal with my emotions, so while you were here I was determined to just focus on the situation and the facts.
By the end of the night, you still had a fever, you were on oxygen, your heart rate was elevated, you were so very swollen, and I said the words to Dr. Kelly, "I am wondering if this is just her body shutting down". We would stay the next 2 days at a crossroads between hospice and essentially the land of nothing. Your father and I didn't talk, really, we hardly even looked at one another. It was a dark and lonely place to be. It was tense, the house was essentially falling apart. Your siblings knew you were "sick", they came to your bedside every day. We didn't tell them anything more than you were "sick" at this point. It hadn't even been 2 months since Saba died, we couldn't tell them you were dying just yet, especially when aba hadn't come to terms to deal with it either.
I am just sorry there was so much turmoil in the decision, in the air, all around you. We only ever wanted you to be comfortable and at peace. I am sorry it took us a few more days to sort our emotions out enough to best help you.
Until tomorrow baby girl.
Love always,
Ema
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