Saturday night we couldn't believe it, by 5pm we could hear Jason's chest again, VERY bubbly, very chesty, very wheezy. Unbelievable. When we say Jason changes by the hour we are not kidding. One minute he can be totally fine and the next minute chesty. He did vomit once and we are not sure if he aspirated that time. That's the only thing I can think of because how could he go from a clear chest to very chesty?? Anyway we started nebbing him again 4 hourly, before bed I put his humidifier on, rubbed his chest with vicks and gave his chest meds. Unbelievable.
This morning he was sounding better than last night thank goodness but still chesty. I have booked to go for physio tomorrow at 7:30am - my goodness so early but it was either then or only at 2pm which will be no good, by then he could totally change and get worse.
Today was a little better, still chesty so we continued nebbing, feeding we had to go very slow but we managed to get through the day with a few gags, no vomits.
We are still trying to figure out what is causing the gagging and vomiting. It is not the formula, it doesn't matter what formula we give him, it is not the medicine, he has had the nissan fundoplication so it can't be reflux, he doesn't have any allergies, he is allergic to nothing which was ruled out in Austria. The doctors have done every test under the sun. We did so many blood tests while in hospital now and nothing was picked up, no rotavirus, no adenovirus, no salmonella, nothing. He has had so many endoscopes, a colonoscopy, who knows. One day someone will figure out the missing piece of this puzzle but until then we have to be patient and wait.
It is extremely hard for us having such a sick child. We cannot make any plans, usually plans that are made have to be cancelled. We haven't been to a movie or out alone in 3 years. Gosh we are just trying to survive the day. When we feed Jason we feel guilty knowing that he will feel sick afterwards so sometimes we leave him just to have him happy for a while, but he has to eventually be fed. Like so far I haven't even managed 400mls yet and by now he has normally had 500mls. His milk requirements have dropped and he is losing weight again.
The hard part is when we started Jason's journey in March, our intentions were to help our little man to eat orally by himself and that was the reason for going to Austria. Our hope was that eating would help with everything else, but at the stage we are in right now, we are just trying to keep food in him and that is fed via the tube. Feeding orally is not an option at the moment. And until we can get Jason healthy he is not going to be interested in food and he is not going to talk.
Look I am not looking for anyone's sympathy, my website is designed to say how it is and to describe what we go through with Jason on a daily basis. My intention really is for people to understand what we go through in "Jason's Journey". I am hoping that this website will help people that are going through similar circumstances to realise that they are not alone. We are actually lucky, there are so many parents that have a much harder time than we do with their "special needs" children. Their are children that have much greater challenges than Jason does and there are parents that have huge mountains to climb.
I don't know what our future is with Jason, I don't know where we are going. I don't know what's around the next corner. BUT I do know that God has spared Jason's life many times. I do know that God does answer prayers but he doesn't answer prayers in our time. I do know that I have SO many special friends and family that care about us so much. I do know that Jason will one day eat, I do know that Jason has come such a long way and he is doing absolutely fantastically given what situations have been thrown his way. Our little boy is a survivor, our little boy is amazing, our little boy always has a smile on his face no matter what he goes through AND I do know that Bruce and I are doing out best under the circumstances to keep going, to look after our little boy and to try our best to make the most out of every circumstance.
Christmas and New Year is just around the corner and we only have one wish and that is for health for Jason. It will come, one day it will come!