Crazy heart rate

Mac’s heartrate suddenly was going into the 160s, then down to 98, then 150 then 217. It went on for over an hour - it keeps happening . We had everyone in here weighing in and doing tests and I think the consensus is he has everyone stumped 😳 I don’t think they believe his heart is really jumping up to over 200 bpm - something is just going on with the way his heart is firing and how the machine is reading it. 

He is having some intense shoulder pain we think is nerve pain from the placement of his new pacemaker. The only relief they can offer is a nerve pain and seizure med Gabapentin - Tylenol and Motrin aren’t helping. We are waiting for a visit from their complementary medicine pain clinic team - thinking maybe acupuncture could give him some relief.
When the pain team showed Mac the pain chart he started crying. When we asked him why he was crying he said because the last boy looked so sad it made him cry. Sweet boy

Macsen loves the LEGO Batman movie and has been obsessed with trying Batman’s favorite food Lobster Thermador. He checked the cafeteria everyday and we looked at all the restaurants Uber delivers but no luck finding the dish. After all that his Abby Gabby bought him some lobster but he was not a fan lol. Thank you Katye for this adorable Batman figurine ❤️❤️ Mackie loves it and it doesn’t smell “gross.” We also found him some lobster gummies he enjoyed more than the real thing

They started the milrinone wean yesterday afternoon. I feel his doctor isn’t hopeful he will tolerate the wean - she’s talking about discharging him on the med. It is an IV med so he would need to keep his PIC line and have to be connected to his meds 24/7. Children’s of Alabama doesn’t do milrinone at home so I think we would have to be admitted in Birmingham if that happens 😞 His heart rate is higher since starting the wean. Please pray his heart is ok coming off the meds and he tolerates it. He just wants to go home. I made the mistake of letting him watch our home videos last night and he cried for an hour afterwards:(
Here he is eating a butter covered sausage - his request for snack. If his appetite is any indication he is doing better but his labs still look pretty bad.