Pre-Op Day

Nathan and I got to the hospital at 7am this morning. He was full of energy!! The day was full of pre-op testing. Nathan as usual did amazing! I actually was worried that he wouldnt do well for the blood draw so I waited till Jason could get there to help me "hold" him down. Well the boy never really cried! I was so proud:-) Then I thought for sure he would need cuddles from his mommy......nope a sticker and daddy bouncing him around was all he needed. I secretly was crushed. But Im sure by the end of this he may ask for me to cuddle with him. He is growing up though. I met a mom that had a 5 month old that was getting ready to have his first heart surgery. Nathan of course loved seeing a baby and wanted to give him toys. It was very sweet. Kind of a strange feeling that he is getting older and meeting all the babies that will go through what he has already been through.

We ended the day with meeting with Dr. Breitbart. He mentioned that this cath will also tell us if Nathan will just need the straightforward Fontan or the Fontan....plus a bit more:-) This is concerning the obstruction that I have spoken about before. If he does need "a bit more" than the Fontan it could result in a pacemaker. Which we do want to avoid. But, like I have said before, it is what it is. Just another piece to learn more about.

We were out of the hospital by 2pm. Came back to the hotel and "tried" to nap but Nathan wanted nothing of it. So by 6:45pm he was sound asleep for the night and is snoring as I type. Tomorrow we are scheduled for the cath at 8:30am. I will update midmorning!!!

Also- It seems everytime Joshua is in the exam room he always has one question for the doctor, This time it was "What color is a heart" Soooo cute:-) The doctor told him red and Joshua said ok. I think it made him feel like he was apart of the discussion:-)

Thank you everyone for all your thoughts and prayers!!

Love
Laura

Nathan's Surgeon

Dr John Mayer will be Nathan's surgeon for his Fontan!

http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=mayer&pict_id=9900960

This is the week of Nathan's Heart Cath

Well, it is beginning. Today I am going to try and get things ready for Nathan's heart cath. Jason and I decided that Nathan and I will spend the night in a hotel near the hospital on Tuesday and Wednesday night. We live about 45mins from the hospital but with rush hour it can take about an hour and a half to get there. Love Boston traffic! We just dont want to have to wake both of the boys at 5:30am both mornings to make it to the hospital by 7am. So the plan is for me and Nathan to spend Tuesday night in the hotel and on Wednesday he has a FULL day of pre-op. Then on Thursday is his heart cath. This is to make sure he is ready for his heart surgery on the 28th. They will check all his pressures to make sure he can tolerate then Fontan circulation. He will be in the hospital till Friday.

Jason will take Joshua to gymnastics on Thursday morning. This way he wont miss a class:-) He loves gymnastics.

I will update a few times this week! Especially on Thursday during the cath. Hopefully I will get to have a tour of the hospital while he is having his cath so I see how our life will be during his surgery.

Hope everyone is doing well!!!

Laura

Thank you!

I just wanted to thank everyone who is sending gifts to Nathan for his hospital stay!! We have received a lot! It looks like Christmas in Jason's office. I know Nathan will enjoy them while he recovers. I will make sure to take pictures when he receives them.

Next week he will go in for his heart cath on July 15th. We still havent told Joshua or Nathan. I am trying to find the right time and well.....the right words. I am going to wait till Monday to tell them. That way there wont be a lot of time that passes until everything starts. Joshua is very smart and I worry about how he will feel during all this and if it will scare him. For Nathan, I still think he is young and things wont click for him until he is in the hospital. Also, Nathan has amazed me at how brave he is so Im sure he will take this as best as possible.

I will keep everyone updated on this website! So check back soon!

Love
Laura

Next Surgery is Scheduled!

Hello Everyone

Well as most of you know, Nathan's next heart surgery is scheduled for July 28th. He will have a cath done on July 15th which he will stay in the hospital for one night. Then the big surgery will be July 28th. I will use this website like I did last time to update everyone on his progress.

Thank you everyone for being here for us during this time. The move to Boston has gone extremely well! The boys love it here, as do Jason and I. Didnt realize we were going to have his surgery so soon after moving, but everything has fallen into place so far Im sure this will be for the best.

Hope everyone is doing well!

Laura

Video

http://www.imdb.com/video/wab/vi2620785177/

Interesting....

When Dr. Helen Taussig wrote Congenital Malformations of the Heart in 1947, she described one malformation as “Atresia or marked hypoplasia of the aortic orifice prevents the expulsion of blood from the left ventricle in the normal manner.” Taussig described several variations of the defect – actually different defects, later grouped together under the same deadly name – but could offer no treatment suggestions. Her Tetralogy of Fallot (ToF) patients could at least squat and get some temporary relief; children cursed with this malady died in less than one week. The left side of the heart wasn’t damaged as much as it just wasn’t there.

It wasn’t until 1958 that Dr. Jacqueline Noonan and Dr. Alexander Nadas named the group of defects Hypoplastic Left Heart Syndrome (HLHS). Hypoplastic comes from the root word hypoplasia, which means “small”.

But having a name for it didn’t make it any less deadly as HLHS continued to claim 100% of its victims. This sad story continued until 1985, when the first successful infant heart transplant took place.

At about the same time the Norwood Procedure was developed. Originally designed as one operation (which consistently failed) the procedure was soon split into two heart operations – and eventually three – which seemed to work. HLHS children now had a chance. Obviously long term survival rates aren’t known yet, but approximately 70% survive the three surgery protocol.

And thats when the dirty little secret of HLHS showed itself: While survival rates for the three operation procedure may be in the 70% range, getting from Stage I to Stage II is the hardest step.

The goal of the Stage I operation is to make the Right Ventricle do the job of the defective Left Ventricle – getting the blood to the body. With all of the blood flowing through the right side of the heart, that side is subject to higher flow pressures than it usually receives. A lot higher. In a defect in which the entire left side of the heart is damaged, a successful outcome usually depends on the Tricuspid Valve – located on the right side of the heart.

The inital results were confusing. The Norwood worked – then it didn’t. There didn’t seem to be any rhyme or reason to it, no way to predict outcomes. The surgery itself worked, but too often the results seemed to be as random as a roll of the dice. The answer was the Sano Shunt, invented by Japanese surgeon Shunji Sano – a direct connection from the Right Ventricle to the Pulmonary Artery through a Gortex conduit. (this sounds redundant, but the Pulmonary Artery is normally disconnected from the ventricle in the Stage I operation). Studies showed that survival chances with the Modified Norwood was 11 times greater than with the Classic Norwood.

And now it is time to turn the tables – we’ve got a nasty little trick of our own. Heart defects have to start somewhere… at some point in fetal development, there must be one isolated problem that seems to “snowball” into something bigger as time passes. If we could find that one little problem and repair it then, maybe we can stop the snowball before it gets too big. A pretty cool idea, and maybe one day…

Someday…

A study released Monday (September 28, 2009) revealed that for seven years, doctors at several hospitals in Boston and Harvard Medical School have been detecting Aortic Stenosis in fetuses. Fetal Aortic Stenosis is a snowball; it usually becomes HLHS as the fetus develops.

70 future HLHS patients underwent surgery while still in the womb – a needle was inserted into the mother’s abdomen, passed into the fetus, and into the heart of the unborn child. A small balloon was used to enlarge the abnormally small Aortic Valve. 51 of the procedures were considered successful… and 30% (17 children of the 51) were born with two functional ventricles. That’s 17 children who won’t have HLHS.

Mark September 28 on your calendar… that was the day that the CHD world changed forever.