Swallow Study and Follow-Up
The Swallow Study
Reiss went to Mercy at the beginning of May to go through a modified barium swallow study to see if she was aspirating fluid or food. She did so good! She was in the hospital…in a new place with many hospital staff in one room and She took each item we asked her to try without any issues – water from a cup, water from a straw, applesauce, pudding, fruit cocktail, and graham crackers.
They did find that Reiss’ epiglottis is a little lazy. If you are not aware, the epiglottis is the anatomy used to cover the wind pipe and direct food to the esophagus/stomach when food hits the back of the tongue, triggering the swallow reflex. We watched Reiss’ epiglottis not trigger as quickly as it should and also not close completely. Some water even looked to start to enter into the wind pipe, but was quickly sent into the esophagus by her swallow reflex.
The therapist recommended some things to us:
- NO straws! These pesky things shoot fluid too quickly to the back of her mouth, increasing the livelihood of her coughing or possibly puking.
- NO fluids laying down. Operation stop sippy cup at bedtime started the night of her swallow study. The first 3-4 nights were a little shaky. One month later, she is doing great!
- Meals and snack time need to be focused and seated. She didn’t aspirate food during the study, but it was a very controlled and focused experiment. We cannot guarantee she won’t aspirate or cough if she is not paying attention to chewing and swallowing properly as she is walking around, playing, etc.
We are happy that we went ahead with the study since it has given us this useful information. Even if this is just one item out of many that are attributing to her coughing, puking, breaking blood vessels, and coughing up blood, we are excited about having some control over this item and helping decrease the instances.
Reiss went in for a follow-up to her swallow study this week. She did great, as she has in the past. From her standpoint, this was probably the best visit to the hospital yet! She got to eat fruit and graham crackers – while sitting in a high chair (this is so fun to her now. She likes to try to fit into what we have deemed “baby items” now that her baby cousin Esther is around), drink juice, read a book and play with other toys!
From a parent’s standpoint, we learned that Reiss has learned to better control her food and drink intake. We have worked hard on this and found that it is just easier to give her the truth. She knows why she can’t drink from a straw – and will tell you why if you try to give her one. She knows that she can’t drink lying down, needs to take small bites and completely chew her food (we say, “like an alligator!”).
The specialist said that this “lazy epiglottis” can be temporary. With some education and exercises, Reiss may be able to eliminate he issue entirely. exercises? What types of exercises will help her strengthen her epiglottis? See the pictures below.
- Exercise 1: Reiss is to ly on her back. While looking at an item, a book in this instance, she is to lift only her head and hold for a couple of seconds before lying back down. She is to not use her arms for support on this one.
- Exercise 2: Reiss is to ly on her belly. She can use her arms as support if needed. The specialist used activities like tablets, books, coloring, etc, as examples on what to use during this excercise to keep Reiss’ attention. Since this excercise is easier than #1, she can do this for a longer amount of time.
If she does these two exercises daily, it will strengthen the muscles in the front of her neck, as well as her swallowing issues. So far, Reiss being aware – and being compliant to the rules – has helped decrease her coughing issues. With so many other factors possibly adding to her coughing fits (asthma, allergies, lung/heart issues, swallowing issues), we will probably not be able to completely eliminate her coughing.
Surgery Dates, Changes
At the beginning of June, we went ahead and reserved the operating room in St. Louis Children’s Hospital (SLCH) for July 28th. We wanted this date because it was during the Summer and Roy would not have to take personal days from school. Additionally, it was during a less busy time in football for him.
However, after the conference about Reiss on June 10th, the team at SLCH decided they needed a detailed echo, MRI and 3D print out of Reiss’ heart to gain more information before making decision on surgery route. [Side note: the idea of having a 3D print out of Reiss’ heart is unfathomable! How cool is it that they will be able to see, feel, manipulate her heart outside of surgery, before surgery, to make the best decision on surgery options?!?! Click here to watch a video about SLCH’s 3D models]
Since the 3D model print out takes 2-3 weeks to complete, the surgery date was moved to August 6th. Even that date is still slightly up in the air. If for some reason between now and August 6th the surgery team thinks there is not enough time for print outs, tests, discussions, etc, the surgery will be moved again. We can’t move it too much, though. Once we get too far into Fall and Winter months, the risk for sickness due to the flu and cold season increases.
MRI, Echo, 3D Heart
Reiss is scheduled for her sedated echo and MRI of her heart on July 17th at SLCH. One thing I haven’t mentioned is like the SLCH team, the team at Children’s Hospital of Philadelphia (CHOP) is also needing more information to make an educated response to our second opinion request. Once Reiss is out of sedation on July 17th, we will request to be sent home with the images on a disc, which we will ship up to CHOP for analysis and discussion.
What are they looking for?
There are three options for surgery
- The Fontan. This is the second step (her first step was complete at 10 months of age – The Glenn) to making her heart into a single ventricle heart.
- One issue with this is that the heart will eventually tire, and a heart transplant will be needed into her 30’s.
- The other issues is that since the pressures in her heart would be different/not normal, the pressures to other organs would also be not normal. Specifically, the pressures in the liver would eventually cause liver issues.
- 2-Ventricle Heart. This surgery would make her heart into a 2-ventricle heart. The kicker is that she has ventricular inversion. Her anatomical right ventricle, which is designed to pump blood to the lungs, is on the left side of her heart. The anatomical left ventricle, which is designed to pump blood to the body, is on the right side of her heart.
- With the 2-ventricle repair, the right ventricle would be connected to pump the blood to the body because of its location in her heart. This is an issue because the right ventricle’s pressures and capabilities, as mentioned above, were only meant to pump blood a short distance to the lungs. Ultimately, the right ventricle would fail, resulting in a heart transplant
- Another issue is the conduit. A conduit would be needed to connect the left ventricle (sitting on the right side) to the pulmonary artery. This conduit will not grow with Reiss and will eventually need to be replaced –> more surgeries or cath procedures.
- More surgeries or cath procedures, as mentioned above can also become a problem. As mentioned in previous posts, as Reiss has procedures done, scare tissue grows from where the doctors need to gain access to thread the catheters, or even in her chest from open heart surgery. Lack of access makes procedures difficult.
- “Heroic Restructuring” – I only have a small amount of information on this since it really hasn’t been discussed in detail. Because Reiss’ heart is so complex, the following would have to be completed and could be in multiple surgeries (which means the above issue about access would also be an issue with this option)
- Arterial Switch – basically, switching the aorta and pulmonary artery to the correct placement
- Atrial Switch – switching the atriums to the correct placement.
- Her ventricular septal defect (VSD) will be patched.
- Something else to make the ventricles meet up with the correct valves, making her heart pump as it was designed.
Phew! It has been a while since I wrote a post that long – and, really, it could have been longer. We will continue to try to keep Reiss sickness-free, even with the surgery date change. Until next time….it’s pool and Jeep season!