I am so behind on my updates! We have had a very busy last 2 days!! Cade has still been having issues with nausea and vomiting since surgery. They said this was a chance due to the fact that the tumor was growing on the vomiting center. However, it hasn’t seemed to improve much. They involved the Palliative team yesterday to join in Cades care. They made some wonderful changes to try and help him to be more comfortable and get back to feeling more like his normal self. They increased the doseage of zofran which is every 6 hours. Then they added a small dose of Ativan that they also scheduled every 6 hours to alternate with the zofran. This will help with the nausea as well and getting something for nausea every 3 hours they hoped would better help him. The steroid still makes him vomit, the IV form was instant, so they changed him to an oral dose, but this still made him vomit within half hour of getting it. So they added another med called hydroxizine to also help with the nausea and are giving it 1 hour prior to the decadron. The final thing they did was try to get him away from the opioid for pain, even though he wasn’t using it a ton, and try a different pain idea for him- Fioricet. Usually used in adults, like a migraine cocktail of caffeine, a small dose of a barbiturate, and Tylenol. They were crushing just a 1/4 of a tab and mixing it him for him to take. Yesterday these changes were wonderful to see and hilarious.
The Ativan made him high as a kite, this was hysterical to see. He was talking, moving around, and eating anything in site. It was so great to see him feeling so good and amazing to see that the addition of this Ativan dose made such a difference. He was singing in his bed, stuffing his face with grammie’s famous Chex mix like a little squirrel, and chanting “I’m eating Chex mix, Chex mix, Chex mix.”
However, the night was a different story. He was wired and couldn’t settle himself. He was so fidgety and uncomfortable in his skin. Literally every 10 minutes he was moving his position, whipping himself around in his bed like a tornado, sitting up and trying to jerk himself across to the other side of the bed. This was stressing me out because he was still attached to the IV tubing, the EVD line, and all the leads and pulse ox. This resulted in an exhausted set of parents and one unhappy, constantly tangled up toddler. I was so paranoid he was going to inadvertently pull out his EVD from his head with all his thrashing. I slept in his bed half curled up in a ball on his side or at the end so I could be right there every time this happened. It lasted until 3am. Then he finally fell asleep. But not before he vomited a ton. We were so frustrated and thought it was the Ativan. Like Benadryl either makes you sleepy or wired, we thought the Ativan was doing the same adverse effect to him. This also ended in his IV infiltrating and a new one having to be started in the middle of all of this chaos and frustration. I was not the friendliest mother to the nurse last night, I’m sure I was not her favorite person. But she was still very kind and professional to us, which was greatly needed and appreciated. The IV was done in 1 stick, which I was so relieved by because he had to have a new IV done that morning which took 3 times to get. She also delayed giving the Ativan since we were concerned it was that, but we knew it helped his vomiting seeing as he vomited right when it was due to be given again. The constant 360’s he was doing in bed for 6 hours and the smorgasbord borg he had prior to this definitely did not help the matter. The nurse also kindly did not wake him to give him the Fioricet and had it mixed and ready to give when he awoke. Turned out, we discovered it was the Fioricet that was the culprit.
This morning in rounds it was back to the drawing board to make adjustments. The palliative care team came and talked to us again about the concerns of the meds and the nights events. In rounds we decided to stop the Fioricet all together and go back to Tylenol and morphine if needed for pain. However, we felt that the nausea and vomiting were more concerning and of higher importance in hope that if we could keep that controlled, there wouldn’t be so much pressure in his poor head from vomiting to begin with, and as a result, hopefully no need for pain medication at all. I felt this true too considering at one point during his feast, he happily said to me “my head doesn’t hurt anymore momma.” I did think the Ativan was a bit much considering he could barley sit up in bed without falling over when he got it again this morning, so we cut that dose in half as well. They also decided to try and change the decadron to a crushed pill form as well b/c the liquid has alcohol in it, which can sometimes make kids sick as well. I can’t say enough great things about everyone here. The team this week has been amazing. Involving us in rounds, constantly checking in on us throughout the day, checking on Cade, seeing if we feel changes are helping or harming.
The afternoon today was eventful. Yesterday they raised his EVD from 15 to 25 to continue to challenge him and it went great. This morning, Dr Ruge came by and clamped the drain all together. He checked on how he was doing around 10, and by noon we were pulling the EVD out. This was not fun. They had to give him lidocaine injections to stitch it closed. Once again, Cade was amazing throughout it all. Child life services was there the whole time trying to help distract him while we tried to comfort and encourage him. They also were able to stop his IV fluids and just leave his IV lock in for meds. Once all this was done, Cade got to get up and walk over to the couch for a change of scenery, which he had been asking to do for days! He fought sleep all afternoon, but finally passed out for a little while. So far today has been good. He only had one episode of vomiting and I feel it was due to the hefty dose of morphine he got for the EVD removal. Otherwise, today has been a great day for him. It has been a busy day of doctors, social workers, so on. Cade got to face time with Rylan, eat dinner, enjoy his ice cream sandwich and mike and ike’s that dad promised him (and he of course did not forget!) and he is currently in bed and sleeping. Hopefully tonight will be a night of rest for us all.
Yesterday I was not here for rounds or to speak to the Palliative Care team. The doctor from that team, Roni, personally called me that same afternoon to update me on all the changes. Even though the nurses and Chris had caught me up, she said she had promised to call and touch base with me to discuss their plan for Cade. She was the sign of my day. My warm touch from God. She said to me, “Can I tell you something? I reviewed Cade’s file, and when I saw that this had all been going on for only 2 weeks…2 weeks and you guys were here and admitted…I said, this mom is a BOSS! Everyone think you’re amazing and you are. You truly are. I hope you realize that.” I thanked her through tears.
Our Warrior Journey 