Brendan's ASD is CLOSED!!! :)

The days prior to this surgery were brutal. I was so nervous and really feared it not working. I was so prepared for them to tell me it did not work and he would need open heart surgery BUT that didn't happen. Boston Children's is an amazing hospital and everyone has great bedside manner. I am not really used to that. I received a phone call one hour into the heart cath and my heart dropped. The only downfall of this hospital is that your cell phone has NO reception. I was just finishing my lunch since I hadn't eaten all day along with my son so we rushed back upstairs to talk to someone. I thought to myself why would they be calling only one hour in??? It must not have worked. I was on the verge of tears. A few (very long) minutes later I got a call in the waiting room and the nurse just called to tell me everything was fine and Brendan was doing great and they were about to try and close his ASD. UM you call?? I don't think I have ever received a phone call with an update and definitely not one hour in. That was very nice even if I had a slight heart attack because of it. :)
Less than an hour later I received another phone call and yes my heart dropped again. It was too early for them to be finished... yet they were! The nurse just said they were all done and the Dr. was coming out to talk to me. My brain instantly went to "OMG it didn't work" so I forced myself to ask the question "was she able to close it?" and I heard those lovely words "YES, it's closed". It is hard to explain that immediate feeling of relief. At first I was a bit shocked. When I first said those words to my husband, who was staring at me trying to listen to my phone call and wondering the same thing, it sunk in. It worked!! We both got teary eyed. Open heart has been on my mind for years and there have been many nights of tears from fear. He has been supportive every single time and now I don't have to shed tears anymore about this. I can move on emotionally. My son doesn't have to endure something so strenuous on his body. I feel so relieved and like a huge weight has been lifted. I really felt lighter that night.
We were told we could see him in about 30 minutes but an hour went by before they called us. His father and I went in first. Brendan had two of his grandmothers, one grandfather, his dad, stepdad and of course myself waiting to see him. As we were walking in we were told they had some trouble with bleeding and had to hold pressure for a while to stop it (which created some nasty bruising on my lil boy) and they had to sedate him to control it. His spasticity causes his knees to bend and his legs to scrunch up which wasn't helping the situation. So he slept medicated for the next 3 hours. We all took turns just sitting with him and letting him sleep. He had to lay still for 7 hours so sleeping for 3 of those was fine with me.
He actually woke up peaceful. He usually wakes up very cranky after any surgery or procedure but not this time which was great since he had to just lay flat and still until 9pm. Everyone left around 6pm and we had a quick visit from my sister around 7 which helped break up the time. He vomited his first popsicle which I knew was coming. It always happens no matter what so this little boy who hadn't been able to eat for 24 hours now had to wait for his belly to wake up. He finally got another popsicle and when that stayed down so he mowed down two packages of oyster crackers, a package of cheez its, gingerale, some apple juice, and finally some chicken parm.

We got to leave the room for some x-rays and then just sat together and talked. We video skyped my husband. We tried playing legos but that didn't work with his IV in his good hand and the whole laying down thing. He really perked up after he ate and was much more himself. He was cute and funny and the nurses all loved him. I was exhausted so we both went to bed at 10:30pm after he had a full belly.

I expected a long night of him talking to me and asking questions but I told him we had to go to sleep and he just did! He is amazing! We both woke up alot during the night due to the nurses coming in but I stayed out of it and just listened and he just talked to the nurse and went back to sleep. (still in shock about this!) He asked them questions and handled this whole thing like such a big boy. He really amazed me this time. He is so brave.

We were able to leave the hospital at 10 the next morning after the x rays and echo showed that the device stayed in place!!!! He walked all the way from his room to the van in the parking garage which was one long walk for him in his walker. It must have felt good! He had been asking for McDonalds since the day before so that is what he got and he ate everything. We went home and relaxed and played legos.
We had a great week together and just kept it low key. He did end up having a 102 fever for 24 hours but it hovered around 99-100 other than that so we just hoped for the best and yesterday he was fever free. He has to go see his cardiologist here in RI next week and in 3 months and we just have to hope that the device stays in place and everything goes as planned. He should start gaining some weight now that his heart doesn't have to work so hard!!
It is over and it worked and I am so thankful. The prayers worked and my son is truley amazing and he reminds me of this all the time!!

It is almost time. Surgery #6

I can't believe the appointment is so close. It has been a difficult week for me, emotionally. My worst fear is that this heart procedure will not work and I will be told my 7 year old boy needs open heart surgery. This weighs heavily on my mind and I will not know the answer until Tuesday morning. I hope for ONCE this boy's luck goes his way and this actually works!! I know there are still risks. I finally read about it. I couldn't make myself research it until this week. Normally that is all I do is research research research but to keep my sanity I did not do that. I read two articles and that is all. I just have to remember my son comes though everything with flying colors and no complications and I must believe in my own heart that this time will be the same.

I haven't really told Brendan yet. I don't feel he needs the stress. I can see him listening when I talk about it to other adults but I don't really think he knows what is going on. He hasn't asked any questions yet so I will leave it be. I will let him enjoy this weekend of camping and explain Monday while we are completing 6 hours of testing. He is unaware of all of this. He has no idea mommy took off the whole week to be with him and we will being staying overnight in the hosspital IF it works!! So whoever reads my blog think of my son on Tuesday morning and if you pray...pray with all you have that this procedure works for him and they are able to close his holes and this ordeal can be behind all of us! If you want to read about this procedure here it is:
Procedures using catheters

A procedure that uses a catheter to close the ASD with a special closure device (septal occluder) is a recent but increasingly used option. Catheters are thin, flexible tubes used in cardiac catheterization.

The advantages of such procedures are that they:
Don't require the child's chest to be opened
Usually require no more than an overnight stay in hospital
Let the child recover quickly
Closure with a catheter can't be done for every type of ASD. A catheter can be used with secundum defects (that is, those located near the middle of the septum). It can't be used with defects so large that there is not enough surrounding tissue to anchor the device.

The catheter procedure is done under general anesthesia, so your child will sleep through the procedure and not feel any discomfort. During the procedure, the doctor:
Inserts a catheter into a blood vessel in the groin
Threads the catheter to the heart
Measures pressure and oxygen levels for all four heart chambers
Injects dye and takes pictures (angiogram) of the heart
Uses a balloon catheter (under ultrasound guidance) to estimate the size of the ASD
Threads a special fabric-covered wire frame to the heart
Positions half of the device on the left side of the atrial septum
Positions the other half of the device on the right side of the atrial septum
Wedges ASD between the two parts of the device
Within 6 to 8 weeks, normal tissue grows in and over the device. There is no need to replace the closure device as the child grows.

The outlook for children having this procedure is excellent. Closures are successful in more than 9 out of 10 patients, with no significant leakage. Because the device is relatively new, what is not known is whether there are any long-term problems with the device compared to surgery.

(while googling a link a youtube video popped up for an ASD closure. I think I am all set watching that one!!! Sometimes there is a bit too much information out there for my eyes to see.)