Wednesday, December 26, 2012

Isaac's Christmas 2012

Isaac's favorite gift this Christmas is his "Angry Birds Knock on Wood Game."  He plays with it over and over.  Isaac likes to build various towers and knock them down, by catapulting angrybird characters at his towers.  Isaac also received an Angry Bird Shirt and Puzzle, among his presents.  Isaac was extremely excited for Christmas this year, as he usually is.  He enjoyed getting a phone call from Santa a few days before Christmas, it made Christmas fun.  Although Isaac believes in Santa and enjoys getting presents, he knows that the true meaning of Christmas is celebrating the birth of Jesus Christ and worshiping him.  A few days before Christmas, Isaac received an envelope in the mail.  The envelope was filled with Christmas cards from a Seminary class in American Fork.  We pulled out one card at a time and read them, taking about an hour to read them all.  Isaac was overwhelmed at the love these people showed him, and even more, his parents were overwhelmed with grattitude for these special cards, which had so much thought put into them.  It is really nice to know that there are still a lot of good teens in the world, with so much to offer.  I can see the teens that wrote these cards making great progress as future leaders.  What a beautiful spirit of Christmas these cards brought.  It is interesting to think that 10 years ago, we were anxiously awaiting the birth of Isaac, and wondering so much about him.  I am thankful we have been blessed to have the past ten years with Isaac, it is more than the doctors ever believed he would live.

Sunday, October 7, 2012

It's Fall and Isaac is back to school

Isaac has been back in school for a little over a month and is enjoying the fourth grade, especially because he gets to have Mrs. Wright again.  Mrs. Wright was Isaac's second grade teacher at CopperHills Elementary, she is very organized, caring, and the best choice for Isaac.  She is good at making him laugh, which makes hime at ease with her.  Some teachers are intimidating, and frusterated with Isaac's issues related to his disabilities, although he behaves well.  I am extremely happy that he is in her class, she knows Isaac well and truly cares about him, and watches over him better than any teacher ever has.  We look forward to a great school year. 

Since Isacc's heart cath, this past June, Isaac's heart has been doing well.  We are excited to see him have more energy than he has had for a long time. We hope that Isaac stays healthy, and can wait a long time for his next surgery.  His next surgery is most likely his hearing in his left ear, within the next year probably.

Sunday, July 1, 2012

Isaac's Heart Catheterization

   Isaac had a heart catheterization, a little over a week ago, on June 21st.  This was to close the fenestration in his fontan heart surgery from 2006.  The fenestration (a hole) was created on purpose, to control heart pressures after his last heart surgery.  The fenestration was supposed to close on it's own, and it didn't.  We decided after we talked it over with Isaac's Cardiologist recently, that we would go ahead and let it be closed, which would allow Isaac's oxygen saturations to increase from the 80's to the 90's.  When we arrived at the hospital, we were told to go to Cardiology where Isaac would start with an Echocardiogram,  after that, Isaac had fun playing video games for a few hours before his heart cath.  When it was finally time to go to the cath lab, Isaac was very scared and started to cry uncontrollably.  The Anesthesiologist soon put Isaac to sleep which calmed him down.  Isaac was in the Cath Lab for about two hours, during which they implated this device in the picture above, (Amplatzer Occluder) to plug the fenestration. 
   When Isaac awoke, he was miserable; he complained that his leg hurt really bad from the Catheter, and his throat from being intubated.  It took several hours of vomitting and crying to finally get some rest.  It was really difficult to lay flat for so many hours recovering.  Isaac was anxious to use the bathroom after waiting so many hours while laying flat, being filled with IV fluids, and a urinal was not acceptable to him.  At about 2am Isaac was ready to leave the hospital, and go home straight to his own bed. 
   As Isaac healed, he noticed he had more energy, and could run faster.  Although Isaac hated having a heart Catheterization, it was all worth it in the end. hopefully Isaac can have a very long break before having any more surgical procedures of any kind.

Sunday, April 22, 2012

A Mother & Son Date to Remember
Last Monday I had the best date I can remember.  Isaac and I went to the local Library and watched "The Muppets" together.  Isaac was so sweet, he cuddled up with me, held my hand and laughed a lot.  It was truly a special night, that I hope to never forget.  It was the first time Isaac and I had alone time together that was not doctor appointment related.

Friday, April 13, 2012

Living with Uncertainty

Isaac is home sick today. No real big concern at the moment, just a stomachache. Isaac has been complaining for at least a week or more that his stomach hurts every morning, I am not sure what is going on. Last night he felt like he had a fever. As a heartmom I always worry if this is signs of heartfailure this time or is it something minor. Most likely it is something minor, his color is good and he acts fairly normal. A few days ago he cried saying he was feeling sick and I told him he had to go to school, Isaac constantly feels like this and it's hard to know when he is sick enough to keep home. The part that had me nervous was that I noticed his legs looked pale blue when he was crying, although his color changed back to pink after a few minutes. I sent him to school and kept my cell phone close by all day hoping that he would be okay and he was fine. It has been almost a year since Isaac had his Echocardiogram and visit with his Cardiologist. Isaac's last report said that his Tricuspid valve still leaks moderately, but stable. We have been talking for the past few years about closing his fenestration from his fontan by doing a heart catherization, I will have to wait to see what the Cardiologist says this time. Isaac is scheduled to have his annual visit on May 10th. I get a little nervous as it approaches thinking of what the next step may be. I just hope and pray that Isaac is given the clean bill of health signal and told to come back in a year. I naturally worry because I am always hearing reports of other heartkids not doing as well as him, and I wonder when he will be needing the next step. I know that with his heart condition I am not being unrealistic, I just have to hope and pray that we are able to make the most of the time Isaac has here on earth, and not forget that my girls or anybody have any guarantees to live longer, and we all need to make the most of the time we have. We all live with uncertainty, some of us are just more aware of it.

Monday, March 26, 2012

Croup again

Isaac has had croup since last Wednesday. I let him stay home Wednesday & Thursday, and he had no school on Friday. Croup has improved for Isaac over the past year, this time he has not needed steroids, which is a blessing. I sent him to school this morning, but I feel like the mean Mom cause he was coughing pretty bad this morning and I told him he has stayed home long enough. His school teacher gave me the look last week when I had SEP's not believing that he was really sick. I wish she only understood what Isaac and our family has been through. She doesn't really seem to believe or understand how fragile Isaac really is, because he looks so normal on the outside.

Friday, January 6, 2012


I was thinking today about Isaac's arthritis and how I rarely or never talk about it on his blog. Isaac had a lot of arthritis last night, some in his back and a lot in his leg. He had a bad sleep because of the arthritis. I wonder how many kids with heart issues go through the same thing. Sometimes he has chest pain, right in the middle of his chest; my first thought is heart failure, but I really think it is arthritis again, because of his rib cage being broken open with a saw during heart surgery and then being closed again with wires. I am not looking for pity,I just wonder if other kids like Isaac go through this in the winter and other times when the barometer changes so much.