Kyle’s Fight: Trach, Transplant, & BMT Warrior

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Kyle’s Fight: Trach, Transplant, & BMT Warrior

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02/11/2025

Hoping today his lungs make a turn for the better. So far his oxygen needs keep increasing. Besides pneumonia, he is also being treated for tracheitis, which requires daily trach changes. He totally does NOT like trach changes, so having to change them daily is not so fun. For those who’ve asked how to send gifts, you can call the gift shop at the hospital and they’ll deliver it to him- he’s in TICU room 1404. Thanks for all your prayers and support!

01/21/2025

Update on our sweet warrior boy:
1) I think I can finally say he’s recovered from RSV! His nighttime oxygen has finally hit baseline and secretions have returned to his norm. At his last BMT/immune dysregulation clinic, some of his numbers were low (WBC, RBC, ANC). He’s also still on his immune suppressant until summer, so we’re just hoping and praying we can stay strong and hospital free for the remainder of cold and flu season!
2) One of Kyle’s lab tests came back extremely high and out of range- Vitamin D. There is no logical reason for his level to be so high- he doesn’t take supplements or vitamins or meds that would cause the number. So, while I waited for a call back from Kyle’s doctor for an entire week, I’ve been googling. And let me tell you, googling can lead you down a very dark tunnel filled with not such great outcomes. Thankfully Kyle’s doctor called today and said that with Kyle being happy and active, we’ll just keep an eye on it and monitor, but he’s not concerned right now.
3) Next big day for Kyle is February 25th- he’ll have his triple scope (laryngoscopy, bronchoscopy, endoscopy). This will determine if he’s a candidate to begin airway reconstructive surgery this spring.
Thank you for your continued support and prayers!!!

01/11/2025

It’s not looking great right now- REALLY hoping we can fight through this at home instead of the hospital again. This respiratory season is ROUGH. The back and forth to the hospital has been so hard on everyone. Praying that God supernaturally heals his lungs so we can be together at HOME to heal this time!

12/28/2024

Advocating for this little man can be tough. I’m an introvert, I don’t like confrontation, I like people to be happy, and I don’t like to make waves. BUT…Kyle isn’t a typical child. And he doesn’t follow typical patterns. He follows his own set of medical rules. His body does things its own way in its own time. Anyone up at CHOA can tell you that we try to minimize the amount of time Kyle spends in doctors’ offices and hospitals, we fight to take away unnecessary meds, we try to find root causes instead of just treating symptoms. So when I tell them there’s an issue that needs to be addressed, I expect the concerns to be taken seriously. His AFLAC/BMT/HEM/ONC team has been the most amazing team ever and has always responded quickly to help address concerns over the past two years. But I’m struggling with his aerodigestive team (ENT/GI/Pulm/Nutrition) and am at a point where it seems like no one is willing to help. Kyle is clearly having issues with his lungs that need to be addressed, but despite numerous calls and messages, nothing has happened. He has lung disease that I truly believe has worsened since RSV. I come before you to humbly ask for prayers for the right doors to be opened. For the right people in this team to care and to LISTEN to me and be willing to INTERVENE in his care. He needs a CT/MRI and a sleep study to see what is going on and to make sure that he is receiving the support he needs for his lungs before it worsens and becomes more damaged. 🙏

11/28/2024

Today is Kyle’s 2nd Re-Birthday Day!! Every day I look at him, I give thanks to his selfless donor overseas who gave him the gift of life two times. He is a walking miracle! Behold the power of prayer and the ability of working cells that heal. He went from cellulitis, sepsis, failing liver and lungs, to a very active and rambunctious boy! God is always so good!

11/26/2024

🎈 🎉 I can’t believe this boy will be FIVE YEARS OLD in just two weeks!! I’m so thankful that God has allowed him to see overcome so much! I’m excited about what this year will hold for him!
For those who’ve asked, I’m posting a list with some birthday gift ideas for this highly active big boy! https://www.amazon.com/hz/wishlist/ls/2AY9KQ63XHSSS?ref_=wl_share

10/08/2024

From complete silence to this…watch til the very end to hear the most beautiful words a mommy could ever hear 🥰

10/06/2024

The last pic taken of Kyle before he got his trach. Oh my heart…he is just so beautiful…

09/22/2024

Need some prayers please!!! Kyle has been doing sooo well weaning off one of his immunosuppressants over the past 3 months. Today he woke up with this rash on his face. Please pray it’s not GVHD and that it disappears quickly. He’s so close to being off his Tacro and we don’t need to run into any issues now! 🙏
https://www.amazon.com/hz/wishlist/ls/2AY9KQ63XHSSS?ref_=wl_share

09/05/2024

Kyle Update- September 2024:
1) From a hematology standpoint, he is looking better every month. His ANC is still below normal, but it slowly creeps up closer to normal each visit. He is weaning off of one of his two immunosuppressants and will hopefully be completely weaned by October. His blood pressure has also improved so he’s able to start lowering his blood pressure meds dose and will hopefully be able to stop those too!
2) Trach- I get a LOT of questions about when or if Kyle will have his trach removed. Trach removal (decannulation) is a very slow process, especially in Kyle’s case. Kyle has subglottic stenosis, meaning his airway is extremely narrow. In order to reconstruct his airway and make the opening “normal sized,” they’ll need to take cartilage from Kyle’s ribs to place into his throat to help hold it open and strengthen it. He will need to be sedated for 1-2 weeks so that he can stay still and his throat has the best chance at healing. Understandably, Kyle will need to be in good health and able to heal from this invasive surgery, so it’s up to his medical team to determine when he’s strong enough to have the best chance at a successful surgery. After this initial surgery, his trach will stay in place until they’re sure his airway is stable- most likely for a year or two. He’ll require many follow ups, bronchoscopies, and a sleep study, and possibly a couple revisions, before they will remove his trach. We pray that his body will be strong and ready to begin this next step soon!
3) Liver and spleen: Kyle’s liver is still larger than normal, but it’s smaller than it used to be. His liver numbers this month are the best they’ve ever been!
4) Our boy: Yes, Kyle is on lots of meds and needs monitoring and surgeries. But all in all, he’s a happy boy who doesn’t let anything stop him. Watching his resilience and ability to just keep going through all these challenges continues to inspire me. God has amazing plans for him and I can’t wait to see what the future holds for him!!

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Lizella
Macon, GA
31220

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https://www.amazon.com/hz/wishlist/ls/2AY9KQ63XHSSS?ref_=wl_share

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