Milrinone and Clown Doctors

Macsen was visited by 2 doctor clowns this morning - there’s a joke in there somewhere lol. Macsen told them his 2 favorite jokes and they made him smile. It was so good ❤️ 
He seems to be tolerating the milrinone but we haven’t really seen any results yet. He is still very irritable and has no desire to eat or drink. 
We were told this a.m. that transport was all ready and Boston had a bed then (after I told Mac of course) they ran into a problem with our insurance authorizing his stay in Boston. They are the only one that does the CRt on a single ventricle and that surgery was already approved for next week so I have no idea what the hold up is now :( Abby Gabby is working hard to keep him entertained and happy so I can shower and try to get our stuff to all fit in 1 carry on for the transport when it finally happens. He currently has 1 Iv with 2 lines running in it - milrinone and saline. He is about to get another line put in his other arm bc he has a few tests today that will require lots of blood draws.
The girls are with their cousins (thank you Kohner and Caedon and Uncle Sam.)
Thank you for all the prayers and love. The offers of help and visits - I’m sorry i haven’t responded. Mac is just not feeling well and seems to get stressed with visitors. He’s not his sweet self and it makes him sad when he has a big outburst he can’t control in front of other people. We are anxious to get moved to Boston so we can figure out where we go from here and what are options are.

Back in the ICU and starting milrinone

Mac is in his room in the Icu after getting a”tour.” He always asks for a tour. He visited with his sisters and his cousin, Aunt and uncle. He is so unsettled with all the moving, so easily upset. Moving back to Icu feels like a step in the wrong direction.
He will be starting Milrinone tonight. It’s a heart function med. This is so disheartening to me. It’s a big med and very effective but once you go on it it’s a commitment. He will need to stay on it for a while and since it’s Iv it means we will be living In the hospital :( We are waiting for a bed to open up in Boston before Hopkins can medically transport us.

Visitors

Macsen had a busy day. He was sent to step down - hooray- and had some very important visitors. His Great Grammy, Aunti JoAnn and Nana ❤️ they brought food (and food and food) and presents. The talk earlier today was overnight observation off fluids and discharge tomorrow. We aren’t getting our hopes up though. His heart rate is high again tonight and oxygen is again low. Thank you everyone for the prayers and outpouring of support.