We have been home a little over a week now and it has been great (but not without some challenges). I am amazed that Colin just 4.5 weeks ago actually had his heart stopped (when they worked on his valves) by his team of doctors! You would never know looking at him know and the energy he has! We are truly blessed and are oh so grateful!
Friday Colin had a check up with the surgical team. Colin has two teams that look after him, surgery and cardiology (Cardiology appointment at the end of August). His scars are healing wonderfully, his chest x-ray looks "amazing" and his heart sounded good! He O2 sats were at 95, according to the Mayo clinic, it is a normal range for anyone. Great for a kid with half a heart. All great things to hear. We are awaiting on his blood to work to see if we can start weaning him off some of his diuretics.
His original date for cardiology appointment was set for September 10, but they are trying to move that up to be 6 weeks post op (which would be August 27th ish). At that appointment we are supposed to 1) Get off the fluid restrictions (I hate telling a 4 year old in the summer, no, you can't have anymore water, he has become obsessed about drinks) 2) wean off more of his diuretics 3) Get echo to check his heart 4) Get lifted on his sternum precautions 5)And maybe just maybe be switched off the NO FAT diet to LOW fat diet. I am crossing my fingers on this as it would be SO MUCH EASIER! NO fat is getting pretty hard and is causing a lot of stress between Colin and me (somewhat of a power struggle). He of course wants things to eat that he can't eat.. CHICKEN.. he is growing tired of the same bland no fun foods. And as much as I try to make it interesting, he is counting down until "I can have regular food again and no more no fat food" (and I quote).
Even though the diet and fluid restrictions are challenging and stressful, they are a nuisance, they are no reflection of Colin's heart and the success of his surgery. I am amazed at Colin's strength and how he has bounced back. He runs around and is not out of breathe anymore, he is no longer turning blue from lack of oxygen in his body. He is a little more mature, he kinda had to grow up in the school of hard knocks. I see great changes in him. He amazes me everyday.
Katherine went to Colin's appointment for the 1st time, usually she is in school. She was so good about keeping him entertained. She is the most amazing big sister ever. She even cried when they would not let her go into the chest x-ray room. She didn't want to leave his side. She is so protective over him. He is so lucky to have her and we are so lucky that she has a heart of gold!
So we are moving on with our lives, trying to get back to "normal", whatever that means. School is starting in one week, we have meet the teacher this week. I took Katherine shopping this weekend to get new shoes and school supplies. Sad to see summer end as we did have some fun times, but ready for the fall and ALL the adventures to come! I have a work trip to Scotland in a little under a month, not sure if I am ready for that!
Colin LOVED helping Matt mow |
Katherine had to help to once she saw Colin doing it and in a dress |
No comments:
Post a Comment