What a crazy few weeks it has been. We returned from our most recent trip to Cincinnati with some great progress, and then the pandemic hit our world before I had the chance to really type up an update of what is going on in Rhett’s world. First of all, I truly hope that everyone is staying safe, healthy, and AT HOME!! I am doing my best to put fear to the back of my mind because I truly do not want to know how this virus could potentially affect Rhett if he were to get it. I can only imagine that it would hit him very hard since it is a respiratory virus and he has a rather wonky airway. So if you get the notion to not follow the recommendations, please just think of Rhett and others like him. Following guidelines will help keep him safe, and to also move us back toward normal.
So enough with the pandemic talk. Let’s move on to where we are currently with Rhett. As most of you probably saw, Rhett passed his capping trial on our most recent trip. This means that Rhett is finally strong enough to breathe completely out of his upper airway, although it is still rather narrow. The ENT told us after his scope that his airway looks like it should not work. She even told us that if she had seen Rhett’s airway 5 years ago, she would never have recommended trying out capping. CHARGE is such an interesting syndrome. These kids are amazing, and Rhett proved how amazing he his by rocking his capping trial. What this means for now is that Rhett will continue to have the trach, but we will leave the cap covering it 24/7. So far he has handled this well, and we have only had to suction him maybe 5 times in the last month that we have been home and capping. It is still hard for me to believe that we went from suctioning Rhett every 5 minutes when he was a baby to only 5 times in the last month. This has been life changing! Next steps will be a capped sleep study to check for any kind of sleep apnea, and then we will have a better idea of a plan from there. We had the sleep study scheduled for the end of the month when we were supposed to be in Cincinnati again, but that has currently been put on hold. We also have one scheduled locally in June, and I am thinking that will probably be the quickest we can have it done with all the craziness the Coronavirus has caused.
Rhett was scheduled to have his Cochlear Implant surgery for his right ear on this coming Thursday. Since this surgery is considered an elective surgery, we have had to cancel for the time being. We do not have a new date set since no one knows how long the Coronavirus will stick around. Hopefully things will get back to normal soon so that we can move forward with surgery. Rhett is making so much progress with his listening skills, and he is beginning to use more expressive communication through sign. I am hoping to see even more progress with his communication once he has the second implant. The surgeon is expecting very good results with Rhett’s right ear. When we implanted the left, we implanted for hopes of sound recognition. This time we are implanting and expecting him to have speech recognition. Although Rhett is improving with his listening skills, he has not yet made any true speech. He is able to make a lot of vowel sounds, but no true words yet. I would love for Rhett to speak one day, but my ultimate goal with all of this is giving him access to communication. He currently favors using sign language as his form of expressive communication. If he continues to choose signing over learning to talk, then that is 100% fine with me. I just want him to have full access to language and communication. I have gone back and forth on whether implanting him is the right decision, and I am choosing to have him implanted knowing that I have done everything possible to give him access to language and sound. He seems to respond and understand better when I use a combination of speech and sign in comparison to when I use one or the other. Rhett really loves to listen to animal sounds and when I sing songs with him, so that gives me all the reason to implant him and allow him to have continued access to sound.
While we are feeling some disappointment with having to put this week’s surgery on hold, I am thanking God that he is keeping our family healthy during this time. I know that the hospital is the last place we want to be with all of the germs still running rampant. I will keep you posted on when I know more of the next steps for Rhett. I pray you all will continue to stay safe during this confusing time. I am so thankful today and everyday for all of the doctors, nurses, first responders, and everyone else in the medical field who have chosen a job to help keep us safe. I thank God everyday for Rhett and for each prayer He answers.