Last Birmingham appointment

Home from our appointments. Mac did great. He had to get blood drawn from the same arm he had blood drawn from a few days ago bc they couldnt find a vein on his right arm. But he only screamed for a minute then he watched them fill up all the vials - progress! The results aren’t what we hoped for so we are increasing his meds again. Just trying to keep him stable until we get to Boston next week. More blood work Thursday

Blood draws and appetite meds

Mac had more blood drawn yesterday so we treated him to Panera. He started a new med to help his appetite and while it helped immediately with that it also made him loopy, increased his heart rate by more than 20%, and just generally act weird. I was worried he might be getting dehydrated since we doubled his lasix. We had to pro in the office draw his blood - she was super fast and he only screamed his head off for less than 5 minutes. His Ped feels it’s the appetite med that caused his change in behavior/heart rate and we need to give it more time and he will become more tolerant to its side effects. I took a video almost 8 hrs after starting it and he was still a little manic - his sisters were calling him “Slappy Mac” bc he was acting slaphappy. He alternated between manic and super sleepy. His last appetite stimulant made him angry and aggressive so I guess silly and manic is better ...?

Going to Boston

We finally got word surgery is on! Pre op appointment July 5th, cath Friday the 6th and surgery the 10th. Making arrangements to fly to Boston and looking for a place to stay near the hospital. We only have 2 weeks to plan everything but Macsen is declining before my eyes. His BNP now stays over 2000 even in 3 diuretics his heart rate regularly drops into the 30s when he sleeps - his hands and feet are ice cold. We had to push. Latin to get us an earlier date bc I feel soon he will be too sick to have any procedures. 

Finally some news

Update! We finally heard from
2 people today - the surgery coordinator and the cardiac social worker. They are trying to
move patients around to get Mac in the end of June (the surgeon goes on vacay June 29-July 9.) Or the second week of July if he doesn’t decline more. The delay was apparently bc they were all booked until the end of July and have been trying to get other families to change their surgeries so Mac can get squeezed in there. With his rising numbers they are trying harder.
Thank you everyone for the prayers and thank your friend Aunti Jo Ann for also going in to see what the hold up was.
The photo is Mac’s sister helping him make paper airplanes ❤️

BNP up

Sweet boys BNP has gone up again - over 2000. We are doubling one of his diuretics for a few days but if he doesn’t seem to improve then it’s back to the hospital for him. He hasn’t been eating great for the past 2 weeks and has been so cranky - a sign that he is doing worse. I left 2 messages with different departments at Boston Children’s but still haven’t gotten any calls back - not even to the 4+ messages i left last week. I think we may just have to show up and say “here he is. He’s worse and he needs to be admitted.”

Waiting waiting waiting

The waiting for a date for the next cath and surgery are killing me. After multiple calls this week I felt sure we would go into the weekend - 2.5 weeks after the doctor put in the order - with the dates so we could plan for plane tickets, plan Mac’s sisters and our animals care and what to do for boarding :( I am praying for patience and peace while we continue to wait. This is really affecting my mental health lol and I’m sure my constant pestering is starting to affect the surgical coordinator’s at Boston Children’s

Making memories

Lots of fun over the past 3 days. Pool and bike ride on day 1 - a huge storm hit 5 minutes after we got to the beach. Day 2 we had a 7 mile long bike ride, lunch at Lambert’s and the whole afternoon at the beach. Fishing and swimming on our last morning at the state park. So thankful the rain held off until our ride home. Also thankful for Aaron who always does all the tough stuff - all the driving, packing up camp and connecting the camper, dealing with the septic stuff 😵 and letting us play in the pool another hour while he does all that. Love that man ❤️ Also grateful for these few days at the beach with all 3 of our kiddos - we weren’t sure we would get an opportunity to take Mac to the beach this summer and are so thankful for the memories we made.

Thank you San Miguel family

Macsen received an incredible gift today from someone God put into our life right when we needed it. Thank you Pedro-Nilsa San Miguel for restoring this sweet wooden horse and truly making it into something we will cherish always. Our miracle Mac was over the moon “I love the color! I love the #95 - it’s my favorite! I love my Lightning McQueen horse!”