What better time to sit down and write an update than on snow days. We have thoroughly enjoyed the last few days settling into our new home, staying in PJs way too long, drinking lots of coffee, enjoying the beautiful view God has created outside our window, and enjoying our sweet Rhett playing all day without the busyness of appointments and therapies. This was a much needed break for our little family to slow down and enjoy life among the busy holiday season that is quickly approaching. We have had the opportunity to sit down and read Christmas books that teach the true meaning of the season, while also prepare for an upcoming THIRD birthday. That is so hard for me to believe. When life gets so busy that it seems to fly by, it is such a blessing to have these snow days to just slow down and enjoy the present.
Here is our latest update on Rhett. We are no longer going to follow with audiology in Cincinnati, although we will still have frequent audiology appointments this coming year. We are still working through programs with his Cochlear Implant as it gradually gets turned up a little more with each program. We are noticing some slight response that I am hoping will continue as the implant gets louder and more significant for Rhett. Our next audiology appointment will be with our new audiologist locally in January. We have been very fortunate in the communication that both our Cincinnati audiologist and local audiologist have had in regards to Rhett. We feel very comfortable with the switch, and are thankful we won’t have to travel so frequently, even though we truly LOVE Cincinnati Children’s Hospital.
While we were in Cincinnati a few weeks ago, we followed up with both Nephrology (kidney doctor) and Urology to come up with a plan for Rhett’s kidney reflux. If you remember, back in October Rhett had a procedure done at Brenner’s called a VCUG. This is a very traumatizing procedure that I won’t go into detail about, but it allows the doctors to see the severity of Rhett’s kidney reflux from an x-ray. I was unable to be in the room for this since I am pregnant, which was super hard for my mommy nerves. I am so thankful to have such a strong support, and I can never thank my sister, Johnsie, enough for stepping up to the plate and witnessing some tough stuff. Rhett is so lucky to have an aunt who is willing to take mommy’s place when needed (he is lucky to have 3 awesome aunties). Anyways, the procedure showed that Rhett still has grade 3 reflux. Our local doctor told us that if the reflux is not improving by now, it most likely will not improve without intervention. While we were in Cincinnati, our amazing CHARGE Center nurse, Lucy, was able to quickly add on these appointments so that we can make a plan for surgery. If you remember, I was very bummed that Rhett would have to go through another procedure. I am so thankful to announce that since Rhett is a grade 3 reflux (The scale goes 1 being the least severe to 5 being the most severe. He is right in the middle.) he will be able to have an endoscopic procedure to correct the reflux. This procedure will be outpatient, and will take about 20 minutes. This is way less invasive than the procedure I originally thought he would need. Cincinnati Children’s is so amazing with coordinating multiple procedures in one anesthesia, so we will do the Deflux procedure (correct the kidney reflux) at the time of his next airway scopes. We have this scheduled for March 13th, along with some other follow up appointments while we will be in Cincinnati that week. We are so thankful that our ENT has agreed to do his scopes a month earlier than originally planned, so that we can get the procedure done and scopes completed before baby #2 gets here in May.
With the Deflux procedure, the urologist will go in endoscopically to squirt a type of gel inside of Rhett to prevent urine from refluxing back into his kidneys. A month after the procedure, we will do a renal ultrasound to look at his kidneys, and from there he will come off his antibiotic and we will pray for no infections. Rhett has been on an antibiotic since his NICU days to prevent any UTI’s or kidney infections, and we are so thankful that it did its job. After the procedure he will come off the antibiotic, and the way we will know that the procedure is successful is if he continues to not have any infections. As we quickly approach March, since time seems to constantly fly, I ask that you will also pray for Rhett’s airway. He continues to have inflammation in his upper airway that is unexplainable. That is what is holding him back from getting the trach removed. I ask that you will pray for improvement. Even if his airway is still not ready to be trach free, I would love for it to be moving in the right direction. So again, as we prepare for our next trip to Cincinnati, please pray for a successful Deflux procedure and improvement with Rhett’s airway.
Thank you as always for following our journey. I would have never dreamed three years ago that this is the path our lives would take, but even through the hardships, it has been so rewarding watching Rhett grow, improve, and beat all odds. I cannot thank God enough for choosing me to be Rhett’s mommy. I will end the update here before my pregnancy hormones leave me crying all over the computer, but thank you for your love and support through all that we have been through. I could not have made it mentally, emotionally, or physically without the love, support, and prayers from our friends and family. May you all have a Merry Christmas and a Happy New Year.