Learning more options

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The Road to St. Louie

We made it to St. Louis today with only a 30 minute melt down from Reisser. But those 3o minutes were the…..longest….minutes…..ever. Poor girl had to stop eating formula at 3:30am and only clear fluids up until 7:30am. She was hungry, tired, and stuck in a car seat.

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Once we arrived at the hospital, and the people watching ensued – she was fine. Upon entering the St. Louis Children’s Hospital, memories flood my mind. The sights, the smells – they are all the same. Has it really been 8 1/2 months since we were here for the first time? Is this really the third (and not the last) time Reiss has been admitted? It is crazy how smells can take you back in time. I compare this to the same feeling I get when I awake at 5:30am and walk outside during a cold, crisp, airy morning. The sights and smells bring back preseason basketball moments on the track (puke! – literally) and my stomach churns with preseason stress and anxiety. Except at SLCH, the ladies greeting you at the front desk always have a smile and a soft voice (sorry, Coach!) and something super sweet to say.

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Reiss loves to meet new people – especially children and men. Her daddy does not particularly care for her affinity for men. This fact was confirmed in our prep room today. One of the anesthesiologists was male and Reiss loved him. She would fuss with us and all of the other nurses until he walked into the room – at that point her face would change to smiles and her little arm would raise to wave. But if he got to close to talk to her, she went into shy mode. Yes, people….she is a flirt. At 8 1/2 months old. For such a little pup, she sure has a big personality!

Meeting with Eghtesady

We met Dr. Eghtesady today to talk about why we were getting more tests and what they were hoping to figure out. Here is what we found out.

There are two options (in broad terms) when it comes to “correcting” Reiss’ heart. Correct the heart so that it functions with one ventricle – or correct it so that is functions with two. In order to determine which way to go, they ask the following questions.

  1. Are there two good sized ventricles?
  2. Are there adequate inflow valves?
  3. Can the blood get to where it needs to go?

For Reiss, the answers are.

  1. Most likely – yes
  2. Most likely – yes
  3. Not so much. As mentioned in previous posts, the valve of the pulmonary artery is either super small or completely closed off.

So, the point of the MRI and 3D echo is to determine where the vessels are, where the blood is flowing, how far apart the aorta is from the pulmonary artery – and other intricacies of Reiss’ heart. Once they have this information, they will be able to make a better decision between a one ventricle or a two ventricle option.

One Ventricle Option

With this option, the doctors would do two procedures at two different points in Reiss’ life. The first is called a Glen and would be performed sometime in the next couple of months. We did not go into what exactly the Glen is – feel free to google it. The second is called a Fontan (again, google it) and would be performed at 2-3 years of age.

Risks

  • Failure rate – People with single ventricle hearts will need a heart transplant in late teens to 30s
  • Single ventricle patients do not have the same stamina as double ventricle patients

Recovery time – 5-6 days for the Glen, not sure on the Fontan

Two Ventricle Option

Doctors have a bias to this option. And, quite frankly, if this wasn’t a viable option, we would not be here today going through more tests. There are many options in terms of what route to go with repairing Reiss’ heart so that she has two functioning ventricles. Dr. E briefly mentioned two of them.

  1. Patch the VSD with a baffle so that the Aorta pumps the blood from the left ventricle (instead of its current position in the right ventricle), and put a conduit in for the pulmonary to come out of the right ventricle.
  2. Patch the VSD so that the Aorta stays in the right ventricle and the pulmonary conduit out of the left. The bad thing about this option is that the right ventricle is designed to pump to a low pressure environment – specifically the lungs. If they patch it this way, it would be pumping to a high pressure environment (the body) and would eventually fail — resulting in the need for a transplant later in life.

Risks
Replacing the conduit when it fails.Right now, these conduits are replaced with open heart surgeries – which poses a risk to the patient. Multiple open heart surgeries means higher risk of heart failure, longer recovery periods and an abundance of scar tissue build up. The good news is that research is progressing on this topic even as we speak. Some institutions are placing these conduits with a cath procedure (like what Reiss has already gone through twice). Dr. E hoped that if we do go with a two ventricle option, that she would be big enough to place a size 16 conduit in her heart. Placing this size in her heart could possibly take her into adulthood without the need for replacement. Most her age fit to a size 12 or 14.
Recovery time: Estimated to be 2 weeks, but depends on if there are complications

Another risk for either surgery is – the need for a pacemaker after the surgery because patients develop an arrhythmia.

The Future
Dr E will get back to us early next week to present 2-4 options. Roy and I will choose the option we think is the best fit. Dr E will present this option to his whole team in the next two weeks.

When will Reiss have surgery? Not too sure. Hopefully it is between now and September. They may wait for her stats to decrease as they did in January. But if her little body has developed collateral vessels, then her stats may not drop. Since she is stable, we may be at to choose when surgery is.

Funny Girl
We did find out that when sedation is not coupled with pain Reiss is pretty funny as she comes out of it. Her doped up smile and slap happy attitude were the source of entertainment for the nurses and us.

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