I lay in bed at 4am listening to him gag and gag and gag. I obviously do try and comfort him but find sometimes it’s better to leave him for him to hopefully fall asleep. I lay with him for a while holding him and re-assuring him. His tummy was making huge noises. I vented him (put the tube in his mic-key) to allow some air and formula out. Sometimes venting helps as sometimes they get a build up of air in their stomachs and this relieves the discomfort. Air did come out and I let out some formula as well and gave him some buscopan in case of stomach cramps. He eventually fell asleep.
I have a job to go to; I need to earn some money to pay for the bills and Jason’s expenses. April I didn’t work at all due to being in hospital and May I worked 4 days. The thing with Jason he can either be violently ill and gag nonstop or he can gag and eventually come right. If you feed him, not a chance he will gag nonstop. Some days I make work, some days I just can't. Erin (his caregiver) has been great with helping out if I am not around by checking his temp and giving him water for me and she will let me know if I need to go home to see to him. Luckily work is only 2 minutes away from home.
It really feels like a helpless situation. We have been dealing with this for years. It’s nothing new to us. Bruce and I are so use to it. One minute Jason is fine and the next minute he isn’t. We go through our lives day by day. No doctors can help us; no doctors can give us answers. They cannot pinpoint why Jason goes through these problems. When I got home yesterday and fed him he was fine, I gave him 150mls and he started gagging, his face went all red and blotchy and he eventually passed out asleep from sheer exhaustion.
We obviously need to do the kidney investigation tests which we will do in July and we need to see the surgeon regarding the hypospadias (urology problem). I am not sure if these problems are the reason for his problems he has. He has had the kidney problem and the hypospadias his whole life. He was born with these problems. Before birth my amniotic fluid was low and my sonar scan showed evidence that there was a possible kink in his kidney and other kidney issues resulting in the low amniotic fluid. If he has kidney problems and how bad we don’t know. All we know is that his creatanine levels even with the medication is too high which is an indicator for kidney abnormality. We will know more once we are able to do the necessary tests. We are also waiting for the DNA results to see if Jason has Cystic Fibrosis. Jason’s other “symptom” he has which we have become more aware of is hiccups. Erin has noticed this as well and hiccups are a symptom of kidney disease. Maybe I Google too much!!
The way I feel at the moment is Bruce and I have to just deal with the situation as best as we can and deal with the symptoms as they arise. No doctors have answers for us and it’s NOT their fault. They have tried everything in their power to help Jason and on “paper” the results aren’t showing. We spent 40 days in hospital with the same sort of issues, couldn’t feed Jason at all, went on TPN feeds for a week to give his stomach a rest and eventually we could start feeding him Neocate (the best and most expensive formula on the market). Jason can be fine for a while, as you can see in the above picture he looks so good BUT again we are battling and he is a different child when sick like this. The only answer is a miracle and this is what I will continue to pray for. I know God is in our situation and he knows what the next step is. I will just continue to pray that we get some results to help our little man.