Discharged

Mac is out of the hospital! We are so happy to be on our way home ❤️Thank you everyone for all the prayers, love, messages, gifts for Macsen and our family. We love you all and are truly blessed to have you in our lives

License and registration sir

Mac rode a cozy coupe around the 2nd floor and the security guards were so awesome with him. They wrote him speeding tickets and gave him a badge sticker he put on his car. He helped them “pull over” other pedestrians that were “speeding.” It was so sweet and really made his day. He also had a visit from a friend of a friend bearing Lightning McQueen gifts ❤️ The girls were whisked away by another sweet friend and her family to explore the Zoo and some amazing caverns they can’t stop talking about. We are so blessed

Alabama has the yummiest (and unhealthiest) hospital food lol

SuperMom helps every day in every way. Helping the Mac eat chicken noodle soup and fried okra. I’m still waiting to help eat the chocolate cake! 😁

Another day in the horror-spitle

Good night from Macsen the Grayt.
He had some fun tonight in the game room (going his nurse called bc his telemetry box doesn’t transmit on there 😬.) it was worth it to see him having fun. He ate all his chicken noodle soup for dinner, a whole can of black olives, and a cup of 1/2 and 1/2 lol.
He freaked when it came time for iv meds. Even just the saline flush :(Tomorrow he has a 6 am blood draw scheduled for BNP and transplant stuff :( it’s going to be hard. He could use your prayers ❤️

Mac the Miracle man

Mac is finally asleep. He didn’t get his iv lasix dose until 9 pm 🙄 massive iv dose of diuretics + 1 hour past bedtime + already a terrible sleeper = probably a long night. Plus side he just has a telemetry box on - no beeping monitors in our room (they are being monitored somewhere else.) And hopefully he shouldn’t have any other interventions overnight. We’ve had several sweet friends offer to come spend time with the girls which is AWESOME. That way Aar and I can take care of M together and can both talk to the doctors (which makes all the decisions we face easier.)
I can feel everyone’s prayers - thank you ❤️Macsen is eating like a horse which has everyone stumped lol. They look at his heart and they want to list him for transplant right away - but they don’t know our boy here yet.

Admit at UAB

Waiting over an hour for a room. Everything is better now that Daddy found a wagon

On our way to Birmingham

On our way to Children’s in Birmingham for Macsen’s hospital stay. Everyone is anxious so we let them make their own slushy masterpieces with all the flavors lol. Aaron and the girls will be staying at the Ronald McDonald House - the girls can’t come to Mac’s hospital rm bc of flu precautions in place until April so that complicates things. Please pray these meds work and Macsen’s heart starts functioning better. I want my baby to feel better

Going to have to be admitted :(

Mac did so well at his appointment until the end. He said he felt like something was going to happen to him and couldn’t stop crying :( 
We will bring the camper home and set up an appointment this week to come back to Birmingham for a few days in patient. His new dr agrees with his CHOP dr that he needs to start new meds while he’s being monitored for a few days. He will also have some labs drawn to start the transplant evaluation process.

Camping therapy

Getting some camping therapy in before his big appointment on Monday. His Aunts and cousin drove down from Maryland today so we are planning on having a fun weekend ❤️ I’m so glad my sisters are here

Holter results are in

Macsen’s holter monitor results are in - he’s having multiple PACs. Premature atrial contractions (PACs) are beats which are initiated in the atria or upper chambers of the heart, prematurely, which cause the SA node (the natural pacemaker of the heart) to be interrupted. We think they are what is causing him to say his heart hurts. Alone his card says they are not a huge concern for her but coupled with his diminished function and his other symptoms he has she wants to change some things up. 
His new meds aren’t helping as much as we hoped so we will be started 2, maybe 3 more. 1 will require hospitalization while they monitor him. 
He meets his new local cardiologist a week from Monday so I guess we will find out more about it then. We are switching his local care from Pensacola to UAB. They are a bigger center with more resources. 
His CHOP card wants us to begin the process for heart transplant :(

48 holter monitor

Macsen was happy to get his 48 hr holter off. He was counting down the minutes all morning lol. It’s in the mail on the way to Philly so we will have to wait all weekend for results. He had some episodes where he said his heart was hurting so hopefully they can tell us something about those. We are still in the process of trying to get a new pulse ox. A new one costs over $1300 and our insurance will only pay $600. Insane.
He seems to be holding steady - no better but no worse. He still has that junky cough and his eyes were a little puffier today but he is in good spirits. Tomorrow we are going to try sledding at Snow Mountain. We have all his warm weather clothes and boots and we are looking forward to having some fun together!