Terrifying

The blood ended up taking four hours to drip into Chrsiti’s veins late last night; therefore, she was in unbelievable pain. About half way through her transfusion Shayne and I asked that it be stopped so that she could get a rescue dose of her morphine which they did and then continued with her transfusion. She was hurting so bad so when Shayne asked if they could just put in an IV so that next time she needed blood she could also have the narcotics she said yes. Knowing how feisty little Christi used to fight every IV like a champion prize fighter it broke my heart.

Getting her to take oral pills has become increasingly difficult. Yesterday we couldn’t get her 2PM anti-seizure pill in her. After she threw up about 10:30 last night we decided not to even try the 11 PM dosage, never really realizing the consequences perhaps. Shayne decided to walk back to the Ronald House before midnight and we thought we were in for a quiet night.

I woke up to Christi screaming about 1:30 AM and I helped her get to the bathroom. Her eyes looked so odd with one going one direction and the other looking at me. Her pupils were very small, but I attributed it to her lack of sleep (or mine) or possibly because she’s so “high” as the nurses have said so I didn’t tell the nurses. At one point she was so dazed I clapped my hands together to try to get her attention to get her to move back to her bed, no luck.

At 3:15 AM I woke up to Christi again screaming in pain, but then as I looked at her little body, I could see her shaking and trembling so my mind raced, ‘That must be a seizure.” Not able to find the nurses’ call button in her bed I ran out in the hall and down to the nurses’ station to get help. Christi just shook and shook with her beautiful little blue eyes rolled off to one side. After it ended she drifted off in a hard sleep and the nurses’ told me her oxygen level was fine and that she can hear during a seizure but there’s nothing to do but be with her and make certain she doesn’t choke. (These nurses are Angels helping us through our darkest of days.) I text messaged Shayne and tried to get back to sleep.

An hour went by before she had a second seizure. It was absolutely terrifying to watch her experience that even though other Angel parents have warned me that this can happen when your child’s brain is swollen and pushed about inside the skull.

She just had an IV placed and she really could have cared less. She just let them do it. It was the same way when she said she had to go to the bathroom, but didn’t make it. The IV will keep her pain meds and she can also now get her seizure meds and other meds by IV. (They interfered with the morphine so that’s why she had been getting it by pill form. Pills that she can no longer get up and swallow.) Hopefully, Shayne will be walking over here very soon. I do hope he got a bit of sleep last night since he hasn’t sleep well in weeks.