The Houston trip went well
– other than I took a wrong exit outside of Dallas, making our 10 hour trip more like 12.
The echo tech was able to get really good pictures of Reiss’ heart, including the site of the ventricular septal defect (VSD). Dr. McKenzie said the VSD was positioned close to the back of her heart. This is an issue given the fact that the aorta is at the front of the heart. In order to complete the anatomical repair (all four chambers work and do the jobs they were designed to do), the baffle needed to connect the right-sided, left ventricle (remember – Reiss’ anatomical ventricles sit on the opposite side of her heart) to pump blood to the body through the aorta would have to be long and include two right angles. This complicates the anatomical repair, increasing both the risks of the baffle becoming obstructed, and also the number of stitches in the heart.
Side note: Do you know what a stitch in the heart does to the conduction system and efficiency of the heart? The cardiac conduction system is a group of specialized cardiac muscle cells in the walls of the heart that send signals to the heart muscle causing it to contract. A stitch, in the heart acts as an insulator to these signals, eliminating the ability for the signals to pass as intended. This causes malfunctioning of the heart – also known as heart block – and increases the likelihood for a pacemaker in the patient.
Dr. McKenzie believes the anatomical repair is most likely not the best surgery choice for Reiss. However, he would not definitively know until seeing the heart during surgery. The plan would still be to go in with the intentions of doing an anatomical repair. Plan B would be the physiological repair.
We left Houston believing the trip was worth it. The trip back, and the holiday break, gave us time to let the information from Houston sink in and talk about surgery options for Reiss as a family. Last night, we decided to go ahead and call Houston, asking for a surgery date in May. [Dr. McKenzie said the likelihood of Reiss developing a significant amount of collaterals between now and May was rather low.]
What is the significance of May? That is when school is out – i.e., Roy would not have to take personal days to be with us during surgery in Texas.
As of right now, the date is May 25.
The surgeon’s schedule does not go out that far, however, so this is a tentative date. The scheduler told me she hoped to have a firm schedule for Dr. McKenzie by mid-March.
2015: What we learned | The Top 10
2015 was an interestingly scary year for us. Here are the Top 10 things we learned this year.
- Reiss is uniquely uncommon: Reiss is so uncommon, that you could send the same information to three different institutions and get different opinions and information about her condition from each. Reiss is so uncommon, that the doctors don’t even know which would be better, given her specific CHDs and side effects – the anatomical repair or the physiological repair. There just isn’t enough research out there yet. Reiss is so uncommon, that the doctors don’t really know where the blood is coming from, they can only speculate. Furthermore, they can only speculate as to a medication that could help. So far it is working (we think).
- The 2nd opinion process sucks, but its our right as a parent: I have seen many people on various heart mom groups asking if it is okay to get a second opinion, or being scared the current doctor would find out. The fact of the matter is, no matter how many papers you have to sign, fax, and resign and refax to different institutions – you will NEVER regret getting a second opinion for your loved one. It is your right as a parent/sister/daughter, even if you (or your friends or family) believe you may find nothing.
- Doctors are smart, but so are mom and dad: Most doctors are surprised when Roy and I talk to them using their own language, asking intelligent questions, and challenging answers. Yes, we both have sat through anatomy classes at the collegiate level. However, the majority of our research was done once we got the 20-week-ultrasound news of “your child has a congenital heart defect.” Then again after her reoccurring hemoptysis this year. We know the options, the side effects, the research, the on-going questions doctors have around the nation. And we aren’t afraid to talk about it.
- Family isn’t just defined by blood: Our families have been lifesavers throughout this process – helping us where we need at a moment’s notice. What I didn’t expect this year was the efforts from our work and community families. We received gifts, notes, comments and likes. Charity tournaments, football games, shirt sales, freezer meals, and toys for Reiss. Thank you for your support!
- Trust Roy’s gut: Yeah, I said it. You gotta trust Roy’s gut in regards to Reiss (I’m going to go ahead and say 80% of the time. I can’t go all the way with 100% – sorry, Roy). He was the one that pushed to find another option other than the Fontan, and predicted most of Reiss’ hemoptysis from March through June.
- There are many ways to take medicine: Don’t underestimate your kid’s ability to take meds. Who says a 3-year-old can’t take pills? Reiss can. She hates the taste of the liquid medicine, so we went to pills, thanks to Mama Gay’s hypothesis she could just swallow it.
- Tell your kids the truth: This journey has been easier knowing that Reiss knows exactly what is going on. She understands – even if she doesn’t want to comply – that medicine needs to be taken to make sure she doesn’t cough blood. If others are sick, they can’t be around her. She isn’t supposed to drink from straws. She can’t eat lying down. She doesn’t share food with others to limit the amount of germs she encounters in a given day. All of this she knows, because we told her. We tell her how an IV is administered, it’s okay to be a little scared, how blood is drawn and why. We tell her about upcoming surgeries, what it may be like and where we will be going.
- I hate CHD: I just hate it. I hate how it affects Reiss. I hate that she can’t run and laugh and play at the same level as her cousins. I hate that she is secluded because of how sickness affects her. I hate that she knows so much about hospitals. I hate that there isn’t enough research out there to tell us definitively how to deal with Reiss’ uniquely uncommon condition. I hate that there isn’t a cure. However, I am hopeful. I am hopeful that a cure will be found. I am hopeful for research and answers. I am hopeful that Reiss’ next surgery will be the key to a more normal life for her.
- Pray often: There is no doubt about it in my mind. Prayer is what lead to the first cancellation at St Louis, pushing Reiss’ surgery back and what lead to the second opinion coming in prior to Reiss’ rescheduled Fontan surgery, ultimately leading to us cancelling that date. Prayer is what has lead us to our latest decision that Houston is the best place for Reiss’ surgery. We continue to pray that the hemoptysis will not come back and for a healthy time between now and her surgery in May.
- Take it one day at a time: Tomorrow is not guaranteed – for anyone. CHD could take Reiss from us at any time, and so could any other “normal” threat to a child’s life. Yes, we get frustrated. Yes, we still have the same arguments between parents and children that any other family has. We just try to take it one day at a time, trying our best to live each day with a smile on our face.
Thank you for your continued support through Reiss’ many procedures, especially those that happened unexpectedly this year.
We hope your holidays were bright and we wish you a Happy New Year.