8/16/18 - New Voice


First thing this morning, this guy got a new voice! Well, I haven't used it yet, my new voice, but it should be there when I decide to try. The ENT team went ahead and injected Restylane near my paralyzed vocal cord. Restylane is the same stuff that's used for cosmetic filler (like for lips). It's a non-animal sourced hyaluronic acid. It breaks down with time. So, they injected this stuff to help stiffen up and re-position my vocal cord. The injection will likely need to be re-done in several months time. The ENT team is hopeful, that within that time, the nerve that is damaged (that helps my vocal cord function correctly) may heal or at least recover enough to be acceptable. The ENT doctor said that if, within a years time, this vocal cord hasn't worked acceptably without help, we would need to consider an alternative method to repair it's function. Some people with similar issues never fix it and live comfortably without repair, too. So, we will see how it goes for me. I think today, after my prcedure and all, I am already breathing better. Maybe it's just thinking ahead, but Mom thought so. I was very comfortable all afternoon, at least. Hopefully, tomorrow, I will be more awake and want to make sounds for the first time? Mom is going to cry her eyes out when she hears me cry for the first time. We know that already. Ha, ha. I may get to start NG feeds already this week, too. If all goes well. I can not wait for a full tummy! Yay!!


Also, today Mom talked to one of the heart doctors about the results of the heart muscle biopsy taken at my Cath. Lab. A catheter was inserted and at the end of it is a tool to take a tissue sample. The tiny piece of heart tissue they took were sent to the lab for examination under a microscope (with dyes). Doctors, known as pathologists, examined my heart tissue for signs of infection, inflammation or abnormal cells (looking for signs of rejection). They do a biopsy just to see if the heart tissue is normal.The biopsy from my catheterization the other day has been at the lab and we have been waiting to hear the results. We heard back today and I have no rejection signs this time! Yay, again!! Such amazing, wonderful news. She said that the lab had a couple minor concerns about some possible scar tissue (from my new heart being stiff at first we think) and that there may/may not be a sign of a virus. So, we started antibiotics today and sent blood to lab for testing, just to be safe. 


Because I may have a possible virus, the care team decided to move me to a new room in the hospital that is negative pressure. It keeps germs from hurting other patients. Its just a precaution. There are alot of sick little ones like me here. So, I have a new room now. It looks the same. Yellow walls. Always the yellow walls. Hospital walls should be funner. I can't have my special wall back up or it would be so nice to look at right now. When I get home, I can enjoy all the art your guys made me again. I played a short while, sitting up with Mom. I have my eyes on my toes for the next thing to try to eat. They look tasty. Then, I laid in my Boppy and watched my fishes and fell asleep for the afternoon. I had a busy day. A good one, though. Thank you for the prayers. Good Night. -Heath

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