There are many updates since our last hospital stay in Texas. Let’s recap Reiss’ heart timeline this year. It has been such a roller-coaster.
Reiss’ Heart Journey
- May 25 – 2nd 0pen heart surgery – the “classic” repair to increase her blood flow to her lungs
- June 1 – Her heart stops beating, twice. Pacemaker is definitely in her future.
- June 2 – 3rd open heart surgery to place a pacemaker
- June 14 – Traveled home. She was doing so amazing!
- July 22 – Local cardiologist sees regurgitation in her tricuspid valve.
- August 2 – Heart failure diagnosis at local cardiologist
- August 2/3 – Traveled to Texas to address heart failure. They started her on two new medicines: lasix and enalapril
- August 19 – Traveled home to see if the medicines would help her heart function
- August 26 – Follow-up appointment with local cardiologist. See notes below
- September 12 – Reiss wakes up from a dead sleep and pukes twice – looked for additional symptoms of either heart failure or a virus
- September 16 – Heart failure – again. We decided we were seeing more symptoms of heart failure, so Reiss went through some blood tests to confirm. Confirmed – BNP levels were 1900 (vs 380 the last time)
- September 22 – Follow-up appointment with cardiololgist in Texas. See notes below.
Cardiology Follow-Up Appointments
Reiss did a great job in her follow-up appointment locally, where she had an EKG and echo. Her ventricular function was labeled as “average”, while her tricuspid regurgitation was still “moderate to severe”.
We made a quick trek to Texas in 48 hours for Reiss to see her cardiologists at Texas Children’s. Since she showed signs of heart failure the week before, we decided to get blood work in Texas also. Thankfully, the blood work (BNP level, which tests for heart failure) was only 190, instead of 1900.
The cardiologist was very positive about her ventricular dysfunction, saying it was pretty “normal”. We were happy, while also keeping in mind that the ventricle isn’t working as hard as it would need to if the tricuspid wasn’t leaking.
The team decided to watch her to see how she does over the next three months, schedule another follow-up in December, and up her enalapril dosage to help with the heart’s squeeze. They would talk to the surgeon after we left and get back with us the following week. We asked how long someone could stay stable with tricuspid regurgitation. The cardiologist smirked a bit and said, “Well, Reiss hasn’t read the book on heart defects. She doesn’t follow it.” That’s the truth.
We left feeling positive the ventricle was functioning better.
Call from the Surgeon
This week, we got the call from the surgeon. He wants another surgery.
He said he was not in agreement with the cardiologist – just waiting is not an option for Reiss. If we wait, we could miss a window of opportunity where the ventricular function is still good. If we wait, and her tricuspid regurgitation does not get better, her ventricle will start to thicken and get weary. Once the tricuspid valve is repaired, it is imperative that the ventricle functions well with an increase in pressure. If we wait, and the venticle is not functioning properly, the only option at that point might be a heart transplant.
We will travel down to Texas at the end of October – most likely for pre-op appointments on October 28 – to review her echo once again. It is possible (but most unlikely) that we could see that her tricuspid regurgitation has reduced. However, the surgeon was not optimistic about that happening and told us to be prepared for a tricuspid valve repair on October 31st.
Repair | Plan A would be to repair her tricuspid valve in a way that allows the leaflets of the valve to close as the heart pumps, reducing the amount of regurgitation. If that doesn’t work, they will have to replace the valve all together.
Replace | We didn’t get into options for replacement, but through research, we know that there is a biological valve option (made from animal or human tissue) and also a mechanical valve option. The mechanical valve option comes with more risk, routine blood work and more medicines with side effects.
Have you told Reiss about her next surgery? No, we have not told her she will go back to Texas (most likely) for another surgery at the end of October. I just can’t bring myself to do so. There was just so much pain, and another surgery will not be any different – breathing tubes, extubation, pain medicines, chest tubes, pain. And she remembers it.
It just hurts – physically and emotionally.
It hurts – not just Reiss, but also mommy and daddy, friends and family.
It’s not fair. I try to not think in this fashion often, but it keeps surfacing this week. It’s just not fair. It’s not fair that Reiss (or any child with a terminal or chronic condition) has to know pain, fear, anxiety, anatomy, needles, procedures, medicines, and hospitals.
So, it hurts. Our hearts are breaking while we grasp for the brighter side of our situation.
First and foremost, we are completely blessed with an amazing child. Second, we have faith that we were put on this path for a reason, and that this is done in His time, by His design, not our’s. Third, we are happy that our surgeon has Reiss’ quality of life in mind and recognizes that a window of opportunity may come and go if we do not take action.
Reiss’ 4th Birthday
In the midst of this roller coaster ride, Reiss will turn 4 on October 3rd. She chose a “pink and orange cowgirl party” this year.
For a couple hours on Sunday, we will all pretend that CHD is not hiding in the midst. That it is not keeping our vibrant, silly child from living life to the fullest. She will play with friends and family (at least those who haven’t come down with any illness between now and then), swing at a pinata, try her hand at pumpkin bowling, color, eat cake and ice cream, play pin the tail on the horse, open presents, and just be genuinely happy.
She will smile, like she does, and light up the room.
For a couple of hours, things will be hectic and loud and perfect.
So, to our sweet, sarcastic, stubborn, completely perfect almost-four-year-old: Happy Birthday. We love you more than words can describe.