We have been really busy these past couple of days after having been moved to the "step-up" CVICU. It is a four unit area where we had the lucky bed spot. The past several people who have been in that spot have gotten to move up to the 3rd floor. Guess what, so have we! Yesterday evening, after rounds, the doctors told us we were to be moved up to the third floor. This is the final step/floor to be moved to before being able to be sent home. Before we moved, Mason had to undergo a swallow study. Since his left vocal cord was paralyzed/weakened they had to test his swallowing capabilities. He was placed in a small, car seat like chair and x-rayed while he swallowed some barium liquid. The first swallows with the "regular"/thin fluid he silently aspirated. This means it went into his lungs and he didn't cough it up. They then thickened the liquid with a powdered thickening agent and tried again. This time it went down the esophogus where it should have gone. The occupational therapist told us we would be able to begin trying to offer him a bottle with his Monagen and thickening agent to practice eating, so long as the doctors agreed to this plan. Their concern would be that he aspirates liquids in his lungs and eventually this may cause an infection. This, of course, jeopardizes his health.
Last night we made the move into a big boy bed and went upstairs to the infamous 3 West. This was such a big accomplishment, as it is another step to home. Mason's oxygenation levels continue to be mostly in the 90's. The general consesus is to continue to offer the Captopril to try and adjust his blood pressure and hopefully bring down the oxygenation levels. In addition, since we will be going back to a higher altitude, we should see those levels decline-that is what we want. Ideally, 75-85%.
We had a visit from the urologist today who had some concerns regarding his left kidney. She noted that on his echo she believed he might have a duplicate uretha on his left side. She told us that many individuals have this condition and it is often not known about and does not cause any problem. The concerns would be that he could have a blockage or backflow of urine into the kidney. To date, he has had no fever and no urinary infections to speak of. This is great news. Nevertheless, next week he will have a study done to check for any problems. A catheter will be placed into his bladder and dye will be added. When his bladder fills, the dye will be visible traveling through the various areas that are of question. Any abnormalities will result in a closer follow-up. There would be no need for any immediate surgery unless there were something serious to worry about. At this point, they do not seem very concerned, just cautious since there are no Pediatric Urologists they work with in New Mexico. This is such a limited field, I doubt we even have any!
At 2:00 pm, Sandra, the Occupational Therapist, came in and had me hold Mason at the strangest angle and give him a small amount of thickened Monogen. I held him perpendicular to me and on his right side. This was to try and prevent any liquid from making it past the left side that is possible damaged/distressed. He took to the bottle beautifully and drank 15ml before just tiring out. Sandra told me that it is very common for cardiac babies to tire quickly. Drinking that bottle just wore him out and he slept for hours! Fortunately, it looks like he did well for his first attempt. Tomorrow we will try another feed and continue building up. The main goal is to have him properly nurished and gaining weight.
We have struggled for the past couple of days with his feeds. He has had either extremely loose stools or has thrown up on each feed. The night nurse, Analise, suggested we try and thicken his formula and it appears this has worked so far. She told me that she has a daughter who has a heart condition and went through surgery here at Lucille Packard/Stanford. She said her daughter went through the same problems with eating but eventually outgrew them by approximately 3 months. We don't have that time frame to work with as everyone here is so concerned with his adequate growth before his next surgery, the Glenn. I just learned today that we have a tenative surgery date of November 11. As I may have indicated before, this next surgery, while risky, has a much lower mortality rate. We are going to do everything we can to make it there. In the meantime, he takes his feeds through his NG tube (through his nose and into his tummy via a very small feeding tube.) This means no work for him-total bliss since he gets to eat and sleep at once.
The Pediatric Cardiologist, Dr. Raji, is a wonderful person. She is a young woman and really has it together. She thoughtfully explains the teams goals/plans for Mason and makes me feel like I am an important part of his care. This is a totally different outlook from our time in CVICU, where the emphasis is strictly on the patient. Parents aren't always consulted on medical decisions that are made-they just get it done.
All 3 of our former room mates from CVICU have remained there and will continue to be there for some time. Baby Abigial, also from New Mexico, we have to undergo another surgery by the end of the week, Robert is waiting to be extubated and Mandy's baby is awaiting another surgery as well. Mandy's Dad told me he was a little envious that we were moving up to the 3rd floor. I completely understand.
Deacon Don and Tessie both stopped by today to visit and pray over Mason. It is comforting to have these special people pray over him and others here. By the Grace of God we have made it this far.
The sound of the kids back home is so beautiful. Baby Jaylen is learning so many new words and she is bilingual to boot! I can't wait until they are able to see their sweet baby brother to show him all their love.
