Blake started off his Monday with a VERY happy reunion with his awesome friends at preschool! He went with me to drop off Aidan and Riley so he came into his class to say hi! He received the most warm welcome anyone could imagine from his amazing teachers, his favorite friends and the awesome moms of all those friends. Although he was quiet, he had a big smile and I think it filled him up.
From there we headed to his cardiology follow-up and Blake got a great report. He continues to heal well and move along with Superman like strength. Our doctor said that Blake's heart looked "remarkable" and that it looked like a different heart. Thankfully, Blake's lungs have stayed clear of any fluids so he was able to cut his remaining diuretics (Lasix and another drug meant to hold the potassium that he looses on the Lasix) in half. Blake also came home on an aspirin and that was stopped. The best news on the medicine front is that we have stopped the Amiodarone....this was the drug I mentioned earlier that he has been on for over 1.5 years that has bad long term effects (thyroid damage, glaucoma, etc).
There is one small concern regarding Blake's heart rate which has been abnormally high since last Sunday. A normal heart rate for a 3 year old is around 95 but Blake is around 130 and when he sleeps he is only getting down to 120 when he should get down to his pacemaker which is set at 100. There are a here are a few things it could be...his EAT (irregular heartbeat which landed him on the Amiodarone) is coming back or there is an issue with the heart function but it is more likely that his heart is just having to work hard because his left ventricle is enlarged and stiff. Blake does not seem bothered and everything else looks so great that we are hoping/assuming it is the later. He will go on a 24 hour heart monitor after another follow-up on Monday to confirm that.
Things are settling down at home and we are getting back into our routine. I am still trying to get through stacks of mail and catch up on email and texts. I also just realized today that Mother's Day was Sunday....I had put it out of my head that we would be anywhere but the hospital in Boston. I am feeling very blessed to be spending it at home with my whole family!
We continue to be overwhelmed by the love, support and prayers for our family. Thank you!
Monday, May 6, 2013
Saturday, May 4, 2013
Normal Saturday
Today is the first day things have felt back to "normal" in our house. Blake is feeling much better and is freely moving around the house which means he is able to be on the floor playing with Aidan! He is up to taking 3 walks to the mailbox each day and although he gets tired he is tolerating movement much better. Blake has never been more ready for nap each day and is nearly asleep before I leave the room.
Aidan and Riley seem to be feeling settled with everyone home and back into our routine. Riley hasn't wanted to leave my side but this morning was excited to head to the grocery with Tom. Right now it is about conquering the little things!
We are excited to get to his follow up appointments Monday and Tuesday to ensure he is on the right path to full recovery. He is really anxious to get back to preschool to see his friends so we hope to get an idea of when that can happen. For now we are enjoying our "normal" sunny Saturday morning!
Wednesday, May 1, 2013
Getting Stronger
For the few days that we have been home we have been giving lots of kisses and hugs and working to ensure Blake is comfortable. Although he has gained so much strength in such a short time and has worked up to walking to the mailbox and back, he still needs support moving around and getting on and off furniture. It is remarkable how much he gets better every day.
We were able to give him a bath and try to get off some of the many strips of sticky tape left on his sensitive skin. When we took his last large bandage off (from where his pic line was) he announced "I am not connected to anything else".
We have follow up appointments with his cardiologist and pediatrician early next week. We look forward to sharing how well Blake has done with the team that has taken such good care of him for 3+ years.
I feel a little like a pharmacist each morning and evening but once he is able to come off the Lasix and we aren't worried about his Potassium it will be much easier. He went into surgery on one medicine that we had hoped he would not come back on (it has long term side effects we don't want to expose Blake to) but unfortunately for now he is. Our goal is to work with the team here to get him off that medicine soon.
We feel blessed and overwhelmed with how smoothly Blake's surgery and recovery went. We now have to focus on getting his body well and helping him (and Aidan and Riley) recover emotionally and ensure he understands (as much as a 3 year old can) everything that he went through. Please pray that our happy boy continues with his Superman strength!
We were able to give him a bath and try to get off some of the many strips of sticky tape left on his sensitive skin. When we took his last large bandage off (from where his pic line was) he announced "I am not connected to anything else".
We have follow up appointments with his cardiologist and pediatrician early next week. We look forward to sharing how well Blake has done with the team that has taken such good care of him for 3+ years.
I feel a little like a pharmacist each morning and evening but once he is able to come off the Lasix and we aren't worried about his Potassium it will be much easier. He went into surgery on one medicine that we had hoped he would not come back on (it has long term side effects we don't want to expose Blake to) but unfortunately for now he is. Our goal is to work with the team here to get him off that medicine soon.
We feel blessed and overwhelmed with how smoothly Blake's surgery and recovery went. We now have to focus on getting his body well and helping him (and Aidan and Riley) recover emotionally and ensure he understands (as much as a 3 year old can) everything that he went through. Please pray that our happy boy continues with his Superman strength!
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