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! 🤟🏼💙

Happy Birthday Little Puppy

Happy 1st Birthday, my sweet Brooks.  A year ago I was so ready to meet you.  I wondered what you would look like.  I wondered about your personality.  I wondered how you would fit into our family, and the wild ride we are on with Rhett.  I would sit and imagine what life was going to be like with you.  Now I sit here, a full year later, and I see that you look like me.  I love your precious, sweet personality with a little side of sassy.  I love your sweet smile and infectious laugh.  You have made a perfect fit into our family.  You LOVE your brother, and he loves you too.  You are a travel champ with 3 trips to Cincinnati in your first year of life.  A full year later, I can not imagine life without you.  You have filled our family with so much joy, and watching you grow this year has been the most fun.  You have grown entirely too fast, but I have cherished every first.  Your first smile, first laugh, first time saying “Da-da” and “Mama.”  Your first roll, crawl, and steps.  My heart has grown so much and has been filled with so much love because of you.  You are a true Mama’s boy, and my sweet baby.  I hope your day is filled with magic, love, cake, and all the dogs!  While I am emotional about you turning one year old, I am so excited to see what this next year will bring.  I can not wait to see what all you will learn and do this year.  We love you so much, our Brooksie boy.  I hope you have the happiest birthday.

Quarantine Life

Hi everyone!  How are you all holding up during this time of quarantine?  To be honest, I feel like life has gotten a lot busier since being stuck at home.  I had planned to write more this year, but I just have not found the time to really sit down and do it.  So here I am, giving you an update on our life and what it is like to be quarantined with a child with complex needs and a baby.

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While I have felt some disappointment, stress, and frustration throughout this time of staying home, it has honestly been the best thing for my family.  We have gotten to spend so much more time just being together without the hustle and bustle of running from one place to the next.  Dale has gotten to spend so much more time with the boys since having to work from home, and it has been so helpful having him tag team all of their needs.  I have gotten so much more snuggle time and play time with Brooks which has been a nice change to the amount of time he was spending in the car running from preschool to therapies and back.  Since being at home, Rhett has matured so much.  He is now writing his name and communicating his wants and needs with sign language more frequently.  He is also interacting more with others, although he loves doing his own thing.  School is a great thing for Rhett, but having some true one on one time where we can focus on certain goals has been wonderful for him.

Even though I am loving being home with my family, it has not been easy.  I have been bombarded with becoming all of Rhett’s people which can be draining, especially when I have to give my attention to Brooks as well.  I am doing my best to give each of them direct attention throughout the day, but that typically leaves me with little to no time for myself.  To say I am exhausted mentally and physically by bedtime would be an understatement.  We are fortunate to be able to do preschool and all of Rhett’s therapies online with video chat, but it sure is tough.  Rhett is doing so well that it would be a huge disservice to not continue with his current development plan and goals.  Since everything has moved to online instead of face to face, I have taken the role as his main support, teacher, and therapist.  I have always been super hands on during all his therapies and carrying them out throughout the week, but it has been a definite learning experience for me to go from being the support during therapies to being the person to carry out the therapy with verbal support from his therapist.  I am not going to lie, I am looking forward to when we can do some face to face therapy so I can take a step back, but for now I will continue on.

Rhett tends to get so much attention with my writing, but please do not let that fool you.  Brooks is a definite momma’s boy, and Rhett’s biggest fan.  He stays right in the middle of the action, and boy does he have a little jealous streak.  I think he is loving having everyone home, and goodness has he grown way too fast.  He can clap, wave, say “hey dog” to all the dogs, is so close to being a true walker, and somehow finds his way into mommy’s and daddy’s bed every single night.  Watching him learn and grow has been the most fun!

As things begin to open up, we will continue to stay at home for the most part.  I see a lot of outside time and lake time in our future for the summer.  We will be anxiously waiting for the call to reschedule Rhett’s Cochlear Implant surgery, and I will keep you posted when we have a date.  I pray you all are staying healthy and sane during this time, and just remember that this too shall pass.