We talked to another pulmonologist today about what to expect tomorrow. Here is what we found out.
We will have the CT Scan tomorrow sometime. We will not know a time until after 6:00am, when the radiology office opens. It just depends on who else is in line and the emergency level of those patients. Unfortunately, Reiss will have to be sedated for this procedure since she will have to be very still for up to 10 minutes. I’m pretty sure Reiss doesn’t even sit that still while sleeping for that amount of time.
Our Question and Answer session:
- What are we looking for on the CT Scan? We are looking to see more detail on the lungs and heart, as well as the blood vessels associated with them. This is a less invasive way of getting near the same type of information we would with a catheter procedure. They will inject a dye through her IV and take pictures as the dye flows through her system. They are looking to see if the heart has created any collaterals. Collaterals are small blood vessels that the heart grows, trying to auto-correct blood flow. [Side Note: Reiss has already had some collateral vessels show up at 3 months of age The cardiologists here took care of those (they inserted a small spring to stop the flow) during her stent widening in January of 2013.] They are also looking at the capillaries of the lungs to make sure there aren’t any issues. Lastly, they are looking at the pulmonary arteries. When the cardiologists reviewed the echo from Thursday, they were unable to see the right pulmonary artery. The CT Scan will let them see how big this artery really is, and if it needs intervention (stent, ballooning).
- How long is the procedure? The procedure from the time they take her to when they bring her back, will be about an hour.
- When will you know the results? After the procedure, we will be talking to the different teams (Ear/Nose/Throat, Pulmonary and Cardiac) on what they thought they saw. It could take up to 2 days for the radiologist to completely review the results down to the fine details.
- What are we looking for on the Swallowing Study? The swallowing study will entail Reiss taking a drink of a dye solution while they take an x-ray. They are looking to see if any portion of the dye will go down her airway (aspiration). The hypothesis is that if she is aspirating food and/or fluid at any level, that this would irritate the airway, causing her to cough.
- If we find out that she is not aspirating, and we find nothing on the CT Scan, what is the next step? We would need a catheter to look deeper into the lungs. There are also some labs to look at autoimmune deficiencies.
- Let’ assume that Reiss’s 2nd open heart surgery is the Fontan, and she lives with a single ventricle heart – what is the likelihood of needing a lung transplant when her heart ultimately fails? The likelihood of her having a lung transplant at this point is rare. However, if it were to happen, the doctor did mention that the lung transplants are not as successful as heart transplants.
- Are there any negative long term affects of an inhaled steroid for asthma? The inhaled steroid she currently is using could cause Reiss to grow 1/2 to 3/4 of an inch under her projected height.
The Swallowing Study
Since they are testing for aspiration during this study, they will most likely do this either Sunday or Monday. It will take a while for Reiss to completely get the sedation meds out of her system from the CT Scan. They want to make sure that if she is aspirating, that is not because she is a bit drugged up from the CT Scan.
We will let you know more tomorrow after her CT Scan.