June 6, 2024
June 6
Day 10
Yesterday was one of those days that got flipped on its head, kicked several times and continually rolled over unable to right itself. Pretty traumatic. Pretty sad and disappointing and a day that will leave a long lasting mark to add to the pile of trauma that builds for Tate as the patient and for us who have to observe and get to love her through it.
The short version is, Tate had a major, (but of course rare) reaction to the new med in her IT pump.
(Continue on if you want the long version)
She got a bolus at 2:45 to help get the med moving into her system. She initially felt some very welcome pain relief and we felt some hope that this med was going to be the one. It had to be the one as even in the IT, we are down to the last choice.
These pumps move very slowly as the medication is going directly into Tate’s spine. By 4:00 she was having trouble reading and her eyes felt “twitchy.” She was feeling dizzy and nauseous and in so much pain as we had lengthened her access to IV dilaudid to every 6 hours along with oral morphine every 4 hours. (You can’t go home on IV narcotics.) By 4:30 the ice she is typically covered in that usually brings relief, was causing feelings of skin sensitivity and by 5:00 she was screaming and writhing in burning pain as her thighs and knees and legs couldn’t be touched or straightened yet she couldn’t hold them still.
When a med isn’t used here to be known on the floor, nor are kids seen much with IT pumps for pain. And a reaction like this isn’t common or anticipated, it takes time for everyone to come together and figure it out. WE knew right away it was the pump. Chronic Pain team isn’t an inpatient team and ALL happened to be off campus. Theres maybe 3 people that know how to run the IT pump and it takes a special device to adjust it. It can’t just be stopped as the bodies reaction through withdrawal and blood pressure changes is too dangerous.
We weren’t able to get pain team in and turn down the pump to 50% until 8 Pm. It then took 2 more hours to get to that level. In the meantime, it’s still continuously pumping the medication that Tates reacting to into her spine. The amount of pain was like nothing I’d seen with her since her gut was ulcerated from top to bottom. We gave her every combination of meds to try to knock her out and she was exhausted but the pain kept pushing through. They got her on a strong PCA (patient controlled anesthesia-external pain pump) with a constant rate and a button push and you could see her body starting to relax. We were a hairs breath from the PICU on precedex to sedate her. But for those of you not new to us, you’ll recall, that precedex with Tate also causes days of hallucinations when Tate comes off it. This little lady is so medication sensitive.
Her pain Dr. came back again at 11pm to turn it down again as Tate was having a tingly, heavy chest and still experiencing pain. By that point, the recognizable Tate we love was present again and the screaming and writhing had stopped. My relief came in tears.
This morning, there is still medication going through her pump and she is unfortunately still having some side effects. Her blood pressure was climbing and the night attending woke me in the dark morning hours to let me know they were having to start another medication to keep her from going into crisis.
The prayer for me last night was that in a tiny amount, this medication would provide pain relief without side effects. There isn’t another option in her IT pump other than going back to what was in it before this that we had to cut back on due to low blood pressure and what was partially responsible for this admission. Tate’s team has brought up trying a rheumatology/pain 4-6 week inpatient program at Cincinnati Children’s. I can’t even comprehend that right now.
To put into words the feelings of sadness and frustration and defeat feel impossible this morning. The amount of suffering Tate endures to try to just live a day to nap on the couch with her pups and work towards camp and OT and PT visits with our favorites Meg and Abbey or a trip to Target with Keira feels disproportionate. What Tim and I saw last night and what Tate experienced can’t be erased. It was awful. But it was nobody’s fault. It couldn’t be predicted. And everyone jumped in here to help once they realized what was wrong. God was there. This pump exchange was supposed to happen outpatient. I’m thanking God we were here and not home.