January 31st will forever be engraved in my memory. Watching my son’s health decline right before my eyes and being unable to help. Hearing the words “they want him…they want him there before he gets to critical”.
Watching a team of strangers walk into our room and walk me through what is going to happen once he is loaded into the helicopter. Explain to me what could happen on the flight to DeVos. Having me sign papers while I could barley control my body from shaking. Watching my son being rolled away hooked up to multiple machines with a team of strangers. Walking out into a snow covered parking lot and get into our car. Looking through the frosted window to see the red lights of the helicopter that is carrying my precious cargo.
We were told to take our time. We were told to go home and grab a bag of clothes because we would likely be staying a couple days and then come home. We were told don’t rush…you will not beat us there. We will be with him the entire way, until he is admitted and in his room. We will call as soon as we arrive to give you an update.
My phone rang… before we even arrived home. Mrs Amesbury this is Theresa the AreoMed flight medic…Jase did well we did not have to intubate on the flight. His stats stayed pretty consistent throughout the flight. He is currently in room 806. Take your time, he is in great hands.
The next few hours were a blur. I felt like I couldn’t move fast enough to get to him. The weather reminded me of the weather we have today. Heavy winds, poor visibility, and snow covered roads. Hours and hours went by … not knowing what was going on or who was taking care of my son. My son that was probably very scared and wanted him mom and dad to comfort him.
Hours later we arrived at the hospital and took the elevator to the 8th floor…not knowing what we would walk into. This….this is what I saw. A very tired little boy. A boy that was hooked up to even more machines and alarms. But for this moment he was resting. I only wish this peacefulness would have lasted longer…instead of what happened in the next hours.
Hours of many tears and unknowns
Today we continue to witness a true miracle
On Feb 11, 2018, we were told there was a possibility that Jase would relay on us 100% to live a somewhat of a “normal life”. We were told it was a possibility that he may not wake up from sedation. We were told that the mortality rate of his brain injury was 70%.But this boy is a true fighter. He is showing all those doctors that he has a different plan. He is not willing to settle. He is not giving up anytime soon.
Today Jase had his final IV pulled from his hand. This IV has been in since January 31st. He had all the leads removed from his chest. The only tube that is still present is his NG tube for feeding. Today they discontinued continuous feedings thru his NG. Instead they are doing scheduled feedings (every 6 hours) he receives formula. By 7:00 am tomorrow morning he should be at his goal feedings.
Today we tried applesauce……but Dad ended up wearing it.
He is not ready for any oral food at this time. But we will continue to work on it.OT and PT also got Jase up and out of bed. They had him standing…this little boy is so skinny and has lost so much muscle mass. It is going to take some time and many hours of therapy but we are optimistic he will get it back.Right now little man, dad and I are watching his favorite movie ( The Secret Life of Pets) while he has another meal. Then we will read books and say goodnight.Tomorrow will be a big day. The doctors are very pleased with his progress and feel that Jase is ready to move on to bigger and better things. Inpatient therapy at Mary Free Bed!!! This is HUGE and brings us one step closer to coming home!!!
He still has a long time to make up…but we will take as long as we need!!!
Over the last few weeks of Dec 2018, we have seen and heard Jase do things to increase his independence.
Sometimes its the little things that you over look when you are getting ready. Like your child being able to put their pants on or their socks on without any assistance. Months and months we have been encouraging Jase to TRY to do these simple tasks. And all of a sudden it clicked!!! He will sit down and put his legs into the leg holes of his pants. He will grab his waistband and pull his pants up. He will sit on the floor and work so hard to pull his little sock over his toes and then over his entire foot.
He is also starting to talk more and more Speaking in 4-6 word sentences, asking when he needs help, engaging in more activities at home and school as well has interacting with his peers.
His confidence is growing each and every day..and he continues to amaze me. We are still working very hard on his fine motor skills. Jase is very easily distracted when he needs to focus on what seems to be a simple job. Together with his therapist we are trying to simplify and break down these tasks that he needs to do on a regular basis. On top of the lack of attention, his vision also plays a role in this. I am excited to be attending a workshop next week that will help me understand more about cortical vision impairments. I want to do whatever I can to help Jase succeed. I am constantly looking online to find games, books or activities that we can do to help him get to here he needs to be. He is still delayed compared to the other children in his class, but we are not giving up. We will continue to give him the tools he needs to get him to where he needs to be!!!
March 2019, The last few days we have been battling an asthma flare up with Jase, but tonight I could tell he was declining and I was no longer comfortable treating home. After multiple attempts to open up his airways in the ER we made the call, it was time to send him south.
We will not take any chances with this little man. I know that he will be in great hands and we will be able to get him over this hurdle.
Jase is a true miracle.