Hello everyone I have made some changes around here. A name change is what happened. We went from Us + Three to Modern Farmhouse Living. I needed this change and was ready to complete it. one of my dreams is to live on a farm but that is not happening at the moment so what I am doing is making the best and living out my modern farmhouse dream with that I can.
Anyways, today I am here to talk about Tracheostomy Tube Awareness week for 2020. Our youngest son Kai is two years old and has had his tracheostomy tube almost two years now. You can read about Kai’s story here. Short story Kai was born with multiple conditions that brought him to the NICU right after he was born. He needed a ventilator to breath and just could not come off needing the vent, so the best option was to go with the Tracheostomy’s Tube. He also had a condition called Tracheobronchomalacia meaning his airways would collapse and he was not strong enough to open them back up. As parents it was not an easy decision to make but we knew that it would the best decision for our son to be able to bring him home and try to be as normal as could be. We did as much studying as we could to make sure that we indeed were choosing the right choice for our son. Not knowing if we would be able to hear our son cry or make baby noises, to be able to eat without a tube, will he be able to function like a “normal” child? I found a great article that explains the Tracheostomy Tube really well. Once his trach was placed he was able to be on the vent without having all these tubes all over his face. Check this website out right HERE.
Typically children who have Trachs placed usually get a feeding tube directly to their stomach called a G-Tube/G-button. Kai also was born with a condition called Giant omphalocele which means part of his organs were on the outside covered in skin. So instead of the G-tube he as an NG Tube, Nasogastric Tube that goes through his nose down into his stomach so he can get his feedings through there since he could never take a bottle. Now he still has it and gets toddler formula while we get speech therapy to work on eating by mouth. He can drink by mouth and sometimes gets his formula that way but the tube is very helpful to make sure he’s getting the allotted calories that we have decided he needs with the help of the nutritionist at the doctors office.
This picture above is most of Kai’s bigger equipment. The ventilator, feeding machine, oxygen tanks, suction machines, pulse oximeter, home concentrator machine which administers oxygen by pulling oxygen from the atmosphere and makes it more pure so Kai can receive it through the ventilator. When Kai first came home he needed the vent full time to help him breath and he would get really upset if the vent was off or got disconnected. Most peoples blood oxygen around 95-100 and he would drop below those numbers which can be dangerous because it means oxygen is not circulating through his body properly. So the ventilator & oxygen was on at all times. After he turned a year and he was growing and growing stronger we started trials off the vent at very small increments. Now he is two years and a few months and officially off the vent during all waking hours!! Such an amazing little boy he amazes me everyday. He still uses his ventilator during sleeping time but hopefully we will be able to start doing some trials off the vent during naps & at night. Kai was originally scheduled for his stomach repair in the summer but during Covid-19 we decided to postpone because his surgeon is out of state. SO once he is repaired then we will work towards the trach being fully removed, by God’s Grace. Then we also still work on getting rid of the feeding tube as well.
What I can say about my son having a trach has opened a whole new world for our family and how we became a medical family in a blink of an eye. It all seemed so scary which I won’t lie about. Now that we have been living this life for two year it is just second nature. I can’t count on my fingers how many times I have changed a tracheostomy tube or put it back in because Kai pulls it out. I’ve replaced his feeding time multiple times as well. It can be a lot but I do it because it is my son and we want what is best for him. Everyones journey is so different and you can learn about all the different journeys by visiting the Global Tracheostomy Awareness Group. I am more than happy to answer any questions you all have you can email me or follow all my social media. I am going to try and share more about Kai and the daily things that need to be done. Thank you all for coming here today and taking the time to learn a little bit about our bubba Kai and to bring some awareness.