Let’s Talk Disability

Let me preface this post by saying that what I have written is based on what I have been thinking and feeling. I have been listening, researching, and reflecting from others who either have disabilities or from other parents who have children with disabilities. I am bringing this topic up because I think it is one that needs to be discussed more frequently so that it is not looked upon with negative connotations.

So the word I want to discuss today is “disability.” I will admit, this word has been a difficult one for me to accept when it comes to Rhett. In my mind, he can do absolutely anything he wants to do, which is true. The way he accomplishes things may look different than what others do, but he can still reach any goal he wishes. The word disability has become sort of taboo, which is what needs to change. I have had a lot of difficulty accepting that word as a term to describe Rhett, but why? Just because he has disabilities does not make him less. It does not change who he is and how amazing he is. It’s just another word to describe his uniqueness. Now I’m getting off my point. What I am trying to say is that the word disability should not be treated as a bad word. It is a word to describe a person, but the disability is not the person.

Let’s take a look at what the word disability means. The prefix “dis” means being the opposite. For example dislike means to not like something. So disability means not having the ability. One of Rhett’s disabilities is deafness. It has taken me a long time to say that word when talking about Rhett and his hearing loss, but it is the truth. Rhett does not have the ability to hear (without devices), therefore, has a disability of deafness. Now the point I want to make is that Rhett is deaf, but being deaf does not define his abilities. He is still able to communicate, learn, play, and be a kid. Having a disability does not mean he does not have many abilities, but those abilities may look different than what you are used to. His abilities might shine through with the support of an interpreter or special devices like his Cochlear Implants, but the abilities are there. Some people may have a disability of being unable to walk, but they are able to get around with a wheelchair. Some people may have a disability of blindness, but they can learn to read with a special text or walk using a cane. Some people may have a learning disability, but they are still able to learn when taught with certain modifications. With all that being said, a person who has a disability may need accommodations in order to accomplish all they are able to do.

People with disabilities can teach us important lessons. They show us that there is not one right way to do something or reach a goal. They show us that though there may be barriers or challenges, they are still able to do so many things. It’s time to look past the word disability being a negative way to describe part of a person. It is time we all acknowledge when someone has a disability, recognize there may be barriers for them, but see the person for all their amazing abilities. Let’s embrace the term in a positive light so that we may have a more accepting and inclusive world for those who have disabilities.

Trash the Trach

Wow. What a day. I am laying in a hospital bed with my trach free child, and my mind is going back to the very beginning. I am thinking back to all the things along the way that got us to this point, and it brings tears to my eyes to think about all he has been through. All we have been through. It’s a lot. My mind goes back to the NICU days. To the day Dale and I met with the ENT surgeon and decided that the best chance for Rhett was to give him the trach. How I HATED the trach for so long. All the suctioning. All the hauling around so much medical supplies to keep Rhett safe. Not being able to leave my house with Rhett unless someone could go with me so that I could ride in the back seat to suction as needed. Those early days seem so long ago, yet they seem like yesterday all in the same. As the years went on and we learned more and more about his airway, I hated the trach a little less and less. Because of the trach, Rhett has never had to struggle to breathe. Since he never had to worry about trying to breathe through his narrow airway, his body had the energy to grow and thrive in other areas. We finally got to the point that the trach didn’t seem like such a huge deal. I still wanted it gone, but it was no longer controlling my life. I could go places with just me and Rhett. The suctioning happened less and less until not at all in the last 3 months. My heart no longer beat out of my chest for trach changes, and I had grown to really appreciate the trach. And now it’s gone. And suddenly I’m overcome with so many emotions. I was not sure if we would ever make it to this day, and yet here we are. Rhett is beside me soundly sleeping without the trach, and it is the most beautiful sight.

Wednesday, July 15, 2020

I’ll start from the beginning of today. Rhett had a rough night last night, and I honestly think he is at that point where he knows where we are and what happens when we come here. I always tell him in advance to try to prepare him, but I don’t think he fully grasps it all until we have the long car ride and are in the hotel. He was sassy for all the nurses and doctors this morning, and I can’t say I blame him. After getting a swab stuck in your nose 3 times over the last month and a half due to COVID, I think you earn your right to be sassy. One of the great things of doing procedures during this time is the OR seems to pretty much run on schedule. The waiting room was also bare, and it seems nice and odd all in the same. I was a nervous wreck waiting for the scopes to be over. I always am, but this time I knew we had the possibility of decannulation. My hopes were already high, and I was not prepared for negative news had that been the case. The doctors called us to a private room as they always do to go over the pictures they took during the scopes. When we entered the room, Rhett’s ENT was smiling behind her mask. She was completely happy with how his airway looked, and was excited to share how it had never looked this good. The pulmonologist even compared his pictures to what a typical airway looks like. If you have learned anything about Rhett and CHARGE it’s that their anatomy often times looks anything but typical. They were both in agreement that the decannulation trial would happen today as scheduled.

We went to recovery to find Rhett still snoozing which is the norm for him after anesthesia. He normally wants to continue to sleep even after the anesthesia should be worn off enough for him to wake up. Today I put his cochlear implants on almost immediately after going to the PACU, and he immediately began to stir and wake up. That is super encouraging seeing the difference his new implant is having on his hearing. We soon left recovery to go to our room on the complex airway unit, and we waited a bit for Rhett to wake up even more. After an hour or so, it was time. The team of nurses and doctors came in to talk us through and supervise removing his trach for good! The trach came out, and Rhett has been doing amazing. As long as he keeps up his sats through the night, the decannulation will be permanent.

Thursday, July 16, 2020

Today was an uneventful day, which is exactly what you want in the hospital. The more boring, the better. Rhett came off all monitors, and was able to get up and play. We even got to leave the room to walk around, and Rhett got to ride around in a little car. Each time vitals were taken, Rhett was doing amazing. The nurses had him a little party, and he got to change the number of how many kids have gotten their trach out this year. Rhett was number 11 for this year at Cincinnati. He went to sleep on all monitors that night, and his sats continued to be exactly as they should be. It still amazes me that Rhett is breathing all on his own, just like you and me.

Friday, July 17, 2020

It’s Friday and it’s official! The trach is gone for good!! Rhett has been discharged, and now we are killing time before his audiology appointment for his new Cochlear Implant. At audiology, Rhett did some booth testing with his new implant on. It is amazing the difference this implant has had so far on his hearing. He is hearing sounds that he has never responded to before!! The audiologist gave Rhett 3 more programs to work through before his next mapping appointment. I am so excited to see the growth in his hearing over the next month.

I know 2020 has not been a good year for most, but this year will always hold a special place in our heart. 2020 has been Rhett’s year, and I am excited to see his growth being trach free with his new implant. Thank you to everyone for the prayers you have constantly poured over Rhett and our family. Stay tuned as we can now share our journey being trach free! We love you all!

Exciting News!!

I hope everyone enjoyed their 4th of July weekend!! We sure had a fun time at the lake. The boys played hard and went swimming, and memories were made at our favorite place.

I sort of left you all hanging after my post about answered prayers from our trip a couple of weeks ago in Cincinnati. I said I had more details to share, but I have yet to sit down and share the details of what we learned. I needed some time to process everything because it almost feels too good to be true. But I need my prayer warriors to come together for our Rhett as we embark on another adventure very soon.

We will be leaving to travel back to Cincinnati in a week from today. We had already planned on traveling back to adjust his programs on his new implant, but we quickly added some more things to this trip after our findings from our last trip. The last time we were in Cincinnati, Rhett had a capped sleep study. He had many wires and monitors attached to him so that he could be fully monitored while asleep with the cap over his trach. He had to do this to check for any apnea episodes and to make sure he was safe breathing through his upper airway while asleep. He did great while the doctors and nurses attached everything to his body, and quickly fell asleep. He slept all night long, and we even had to wake him up the next morning. If you know Rhett, he is always our wake up call and not typically the other way around. Normally it takes about 4-6 weeks for sleep studies to be reviewed and read by the doctors. The lead nurse conducting the study knew we had an appointment with ENT the next day, and put a rush on his study to be read. We got the results that next day, which was pretty unexpected, but we were so relieved. Our ENT went over the results with us, but since he is the ENT that follows Rhett for his ears, we had to wait until his ENT that covers his airway reviewed the results. I immediately emailed the nurse practitioner that I communicate pretty frequently with, and she responded with some very positive emails, but again we had to wait for Rhett’s airway ENT and Pulmonologist to review the results of the study before we knew what next steps would be. The doctors quickly reviewed results and let us know that the next steps for Rhett’s airway management would be to scope his airway and do a decannulation trial. That means we will remove the trach and he will be monitored in the hospital for 48 hours to make sure he does not go into any distress when breathing without the trach. We were extremely excited to learn of this plan, especially since it has been a long time coming. We have waited so long to get to this point, and it almost feels to good to be true to know we are so close to Rhett being trach free. I decided to wait before sharing details until I knew more of a timeline for when things would happen. Cincinnati is truly amazing for scheduling things when we already have trips planned. I was expecting the scopes to take place in a couple of months, but somehow they were able to get them scheduled for next Wednesday! They knew we would be there on Friday for more Cochlear Implant mapping, so they got Rhett scheduled for scopes during this trip to hopefully help cut down on our travels.

That was super wordy and detailed. So in case I lost you, I will summarize what will happen next week when we are in Cincinnati. We will travel back to Cincinnati next Tuesday, and Rhett will be scoped next Wednesday. That means he will go under anesthesia and have his airway and lungs checked out. As long as everything looks good with his scopes, he will be admitted to the Complex Airway Unit. While he is admitted, the doctors will remove his trach and Rhett will be monitored for 48 hours. As long as Rhett does well with his breathing during this time, he will leave the hospital without a trach. Yes!! You read that correctly!! Rhett could possibly come home trach free after next week!!! That still sounds too good to be true, and I do not want to get my hopes up yet. We are always hoping for the best, though. Rhett will also have his Cochlear Implant adjusted during this trip, and after this visit we are hoping to be ready to transfer care to our local audiologist. Rhett is doing fantastic with his new implant, and we are so excited to see him grow with his new device.

Please pray for our trip next week. Pray that Rhett’s scopes will go well, and the doctors are pleased with what they see. Rhett will have to do another COVID test, and it has been really terrible each time he has had to do them. Pray he handles it well, and that it is again negative. Pray that Rhett will breathe easy once the trach is removed, and that he does not go into any distress breathing on his own. Pray that this is the trip that Rhett will come home without the trach. Pray that Rhett continues to respond well with his new implant, and that we are able to work him through the programs to give him the best hearing possible.

Thank you for keeping up with the craziness of our life, and for following along Rhett’s journey with us. We are so thankful for all of your prayers and support as we work through the medical puzzle of Rhett.

Quick Update

We are almost one full week post op with the CI surgery, and Rhett is healing wonderfully. He is pretty much back to his normal self, and we are only giving pain medicine as needed. His incision is looking great, and he doesn’t seem to be bothered by it at all besides the itching from healing.

The surgeon said that everything went perfect during surgery. This ear’s anatomy is more typical than his left ear, which means his response to the implant should also be more typical. Rhett did spend one night in the hospital to be monitored, and he slept a big part of that time. We were able to keep his pain managed by alternating Tylenol and Motrin, and he was discharged the next day. Rhett took a few days to get back to his happy playful self, but I can’t say I blamed him. He did take naps the two days following surgery, which is not his norm. He left his head band bandage alone for the most part, until day 3 of wearing it. Having it on seemed to itch and bother him due to how hot it was. Thankfully he does not need to wear that any longer.

We will be going back to Cincinnati next week for the activation. I am so excited to see how he responds with this new hearing device. I hope and pray that it will give him better access to sound, especially speech sounds. We will continue to use sign language, but I am still hopeful for him to speak one day. During our trip next week Rhett will also have a sleep study done. This is another step in the process to get the trach removed. Please pray that the study goes well, and we get good results. I do not have any reason to believe we should find out anything negative, but I do not put anything past Rhett. He has a way of functioning completely fine even if there are underlying problems. Also pray that he will handle all of the things they have to put on his head and body, and that he will go to sleep. We will be leaving Brooks with Nana and Papa once again, so pray that Brooks does well while we are away. We will update again as soon as we get back and have the results!!

Pre-surgery selfie
Rhett did a lot of sleeping following surgery.
Day after surgery. He wasn’t smiling a ton, but we were able to see some smiles with the Minion movie.

CI Surgery

During this pandemic, many things in our lives have changed and been put on hold. As a medical momma, I am constantly planning, researching, and prioritizing the things Rhett needs to help him be his best self. We are currently on the right track to getting the trach removed in the hopefully near future, but before that can happen we need to make sure that we are finished with all known surgeries and procedures that will require anesthesia. The reason being is his airway is not typical, although it works for him. We would not want to remove the trach knowing he will need to be intubated for any kind of surgery. This is not to say that something could come up after trach removal requiring intubation, but we do not want to remove it knowing he has surgeries he needs, when it is much safer for him to use the trach when going under anesthesia. I hope all of that makes sense. Anyways, one of the things that has been put on hold has been his Cochlear Implant surgery for his right ear. He was scheduled to have the surgery done in early April, but it was postponed due to the recommendations to not do elective surgeries at that time. This hold has put on hold lots of things for Rhett and others, but he is healthy and happy so it’s really nothing I should complain about.

That got a little long winded, but now I will get to the point of this post. We are on our way to Cincinnati as we speak, and Rhett will have his Cochlear Implant surgery tomorrow around lunch time. Due to restrictions and the safety to others, Rhett, Dale, and myself are the only ones traveling to Cincinnati for this trip. That means we are leaving Brooks at home with Nana and Papa, which really breaks my heart. I know he is in the best hands, but I sure will miss him for the next few days. I’m sure he will handle it just fine, I just hope I do too!

If you would, please remember Rhett in your prayers tomorrow as he goes into surgery. Surgery time will be around 4+ hours, so also keep me and Dale in your prayers as we wait. Rhett will be tested for COVID 19 in pre-op, so please pray he handles that test well. He absolutely HATES having his nose messed with, and a lot of that is probably due to the trauma we have put his poor little nose through. Pray that surgery goes exactly as expected, and that the implant is successfully placed. Pray that recovery is quick, and that Rhett is not in too much pain after this. Handing your baby over to surgeons does not get any easier no matter how many times you have done it. We are so thankful to have the doctors at Cincinnati Children’s taking care of our baby because they are honestly the best. I am so ready to get this surgery behind us so that Rhett can move on to the next phase of his hearing journey. We love you all! 🤟🏼💙