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!
Sunday, April 28, 2013
Heading Home
I can't really believe it but we are packing up to take Superman Blakey Bear home! They are writing discharge papers and getting prescriptions ready! Aidan and Riley thought they were coming for a visit but turns out they were coming to bring him home! Once we get home and settled I will update everyone here on how he is doing. Please pray that we get everyone safely home and that Blake does as well at home as he has done at the hospital. Our experience at Boston Children's Hospital has been amazing and we are very thankful to each doctor and nurse that helped Blake during our time here!
Happy to be headed home!
Saturday, April 27, 2013
Almost There
It is am amazing to see how well Blake is healing. His stomach issues seem to be completely resolved and he is happily back to eating three meals a day. It seems like torture giving Blake the potassium supplements that he needs because he anticipates how horrible it tastes and makes his stomach feel so he cries at the site of it. Good news though, his levels are back up enough today that he no longer has to take the supplements but has been able to be moved to a medicine that maintains his levels as long as he is on Lasix.
Overall Blake is gaining more strength each day and was able to take a walk down the hallway and back today. He is able to stand at his bedside and do crafts or play with toys. He loves to take rides on his car to visit the fish and outside to the garden.
We received the results of the echo yesterday evening and it all looked great. Blake has a repaired heart with four working chambers!!! He has a small amount of mitral valve regurgitation (when the mitral valve doesn't close all the way and some blood can go back into the heart) but if they need to do something about that it will be will into the future. Between that, his pace maker and his homograft (it was used to close the large hole in Blake's heart) he will have basically maintenance surgeries through his lifetime but for now we just get to enjoy watching him run around with pink lips and amounts of energy he has never experienced!
As long as tomorrow's blood work comes back as good as it has looked today, we will talk about going home by early in the week! We were prepared to be here for much longer so it feels like such a treat to think of taking Blake home and letting him get strong!
Blake has a message for everyone today:
Overall Blake is gaining more strength each day and was able to take a walk down the hallway and back today. He is able to stand at his bedside and do crafts or play with toys. He loves to take rides on his car to visit the fish and outside to the garden.
We received the results of the echo yesterday evening and it all looked great. Blake has a repaired heart with four working chambers!!! He has a small amount of mitral valve regurgitation (when the mitral valve doesn't close all the way and some blood can go back into the heart) but if they need to do something about that it will be will into the future. Between that, his pace maker and his homograft (it was used to close the large hole in Blake's heart) he will have basically maintenance surgeries through his lifetime but for now we just get to enjoy watching him run around with pink lips and amounts of energy he has never experienced!
As long as tomorrow's blood work comes back as good as it has looked today, we will talk about going home by early in the week! We were prepared to be here for much longer so it feels like such a treat to think of taking Blake home and letting him get strong!
Blake has a message for everyone today:
Can you believe that smile!
Friday, April 26, 2013
Joyful Reunion
There aren't really the right words to describe the reunion that happened yesterday but it was a joyful thing to watch. Blake was sleeping when Aidan and Riley arrived yesterday and when he heard their voices he immediately began to smile from ear to ear and wave his arms and legs. It was more movement than Blake had done since his surgery and he hadn't even opened his eyes. The whole experience was the definition of happiness. There was lots of hugs, kisses, high fives and stories to share and I think it was just the medicine that Blake needed.
Blake's stomach issues seem to be much better. He is able to eat a little more and although he really doesn't like them, they have been able to move most of his medicines from IV to oral which is a big step toward going home. He is also up and moving around and we even took him on a little trip outside to the garden yesterday afternoon. We are trying to get him to sit up and move around as much as he can.
It is hard to believe we are thinking about when we will be headed home. Just 5 days ago we were hoping he would come off the ventilator and now we are going through all the steps to allow his body to recover so we can take our little Superman home! Today he had an echo of his heart which took nearly 2 hours. The results of that echo will tell the docs how his heart is functioning and ensure he needs no additional revisions.
When you go through something like this and are in the type of hospital that we are in it is very easy to look around and see the pain that so many children and their families are going through. Through this experience though it has been very easy to also see the kindness of people. This blog has had a few thousand views by people who all genuinely care how Blake is doing! We have received countless emails, texts and cards with well wishes for Blake and offers of help and support for our family. Blake has received so many thoughtful gifts and gestures to make this all a little easier for him. We have even had strangers who know about our kids send gifts and thoughts of prayer. Thank you all so much for the continued love, prayers and support!
Blake's stomach issues seem to be much better. He is able to eat a little more and although he really doesn't like them, they have been able to move most of his medicines from IV to oral which is a big step toward going home. He is also up and moving around and we even took him on a little trip outside to the garden yesterday afternoon. We are trying to get him to sit up and move around as much as he can.
It is hard to believe we are thinking about when we will be headed home. Just 5 days ago we were hoping he would come off the ventilator and now we are going through all the steps to allow his body to recover so we can take our little Superman home! Today he had an echo of his heart which took nearly 2 hours. The results of that echo will tell the docs how his heart is functioning and ensure he needs no additional revisions.
When you go through something like this and are in the type of hospital that we are in it is very easy to look around and see the pain that so many children and their families are going through. Through this experience though it has been very easy to also see the kindness of people. This blog has had a few thousand views by people who all genuinely care how Blake is doing! We have received countless emails, texts and cards with well wishes for Blake and offers of help and support for our family. Blake has received so many thoughtful gifts and gestures to make this all a little easier for him. We have even had strangers who know about our kids send gifts and thoughts of prayer. Thank you all so much for the continued love, prayers and support!
Thursday, April 25, 2013
Transition day
We have officially moved from the CICU to the floor. Blake's heart function looks good and now the goal is to really ensure everything is good with his pacemaker and that the rest of his body can fully recover.
Since about 4am this morning Blake has been feeling pretty rough. They are still trying to keep Blake dry to ensure that his lungs stay clear. However, being dry in combination with everything else his stomach has been through has caused him to vomit throughout the morning. Unfortunately his potassium is low because they are keeping him dehydrated and the potassium replacement causes nausea. They are continuing to give him pain medicines and anti-nausea medications.
He did get to leave his room today in a green car (ride on toy) to head down for a chest x-ray. We took advantage and took him down to the lobby to check out the fish tanks while we were out...that made him really happy. He did well but it is hard to see him struggle as he regains his strength. It was the first time he had been unsupported and he is having a little trouble controlling his neck. The goal is to get him up and try to move every 30 minutes as he can tolerate it. We hope that if he can move it will help his system move and give him relief from the nausea without adding another medication. I know over the next few days he is going to need a little push but then I remember he had two heart surgeries over the last 10 days and I just want to hold him!
We are counting down until Aidan and Riley get here today! We are hoping to take them on a walk to the garden later this afternoon and let Blake go outside for the first time.
Since about 4am this morning Blake has been feeling pretty rough. They are still trying to keep Blake dry to ensure that his lungs stay clear. However, being dry in combination with everything else his stomach has been through has caused him to vomit throughout the morning. Unfortunately his potassium is low because they are keeping him dehydrated and the potassium replacement causes nausea. They are continuing to give him pain medicines and anti-nausea medications.
He did get to leave his room today in a green car (ride on toy) to head down for a chest x-ray. We took advantage and took him down to the lobby to check out the fish tanks while we were out...that made him really happy. He did well but it is hard to see him struggle as he regains his strength. It was the first time he had been unsupported and he is having a little trouble controlling his neck. The goal is to get him up and try to move every 30 minutes as he can tolerate it. We hope that if he can move it will help his system move and give him relief from the nausea without adding another medication. I know over the next few days he is going to need a little push but then I remember he had two heart surgeries over the last 10 days and I just want to hold him!
We are counting down until Aidan and Riley get here today! We are hoping to take them on a walk to the garden later this afternoon and let Blake go outside for the first time.
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