On Sunday (yesterday) we got admitted for Jason's nephrotic syndrome (chronic kidney disease). After we have been monitoring his test results for two and a half years, it is time for us to do some more investigations to try and get some more answers. So yesterday we did a whole lot of urine tests, blood tests and started an antibiotic. We are still waiting for some of the results. His iron levels are a bit low so we have started him on iron supplements and a vitamin C.
We have a whole week of tests to get through. Today was x-rays of the stomach, arms and legs and an ultrasound of the abdomen and stomach, checking all internal organs.
This morning didn't get off to a good start. Jason wasn't well. He had one of his gagging, nausea and vomiting attacks. I am not sure why but I think it was anxiety and stress. He gagged non stop for about half an hour and was very nauseous. The gagging causes a LOT of air in his tummy which makes it worse. When he gets like this I have to insert a tube and syringe into his mic-key (feeding tube) to release the air as he can't expel it any other way. He goes all sweaty whilst gagging non stop and eventually he passes out from pain and exhaustion. Not fun to go through.
Jason slept a little but woke up to the dermatologist looking at his raw bum (not a happy camper). We haven't been able to heal the burn for over 4 weeks now and I hate to know how sore that is for him. The dermatologist agrees with me that it's acid burn and has prescribed an antibiotic to heal it and another cream. We need to air it as much as possible (which is impossible with his diarrhea). He will come and see me during the course of the week.
I had to make the x-ray department hold out with fetching us until Jason had recovered a bit. X-ray department is a few kms up the road, a real fancy private company that specializes in these sort of x-rays, ultrasounds and tests. They send their driver to fetch us and we go on a little outing (quite nice and refreshing to get some fresh air and a change of scenery).
Well x-ray didn't go well, it was quite a traumatic experience. I actually forgot how scared and traumatized Jason is with x-rays. He is petrified of the machines - all sensory problems due to the sound and sight of these big machines. I had quiver lip and big tears and begging me to "go home" before we even got into the x-ray room. I managed to calm him down but as soon as he saw that x-ray machine he was hysterical - screaming and crying at the top of his lungs "I want to go home" "help me" "it's owie" (machine didn't touch him). He was shivering like a leaf with fear and totally petrified. So we had to get through a few x-rays of his chest, his arms, his legs and his feet with him screaming at the top of his lungs.
After the x-rays we had the ultrasound of the abdomen and kidneys. This he didn't mind too much. He found it quite interesting that warm gel on his tummy and totally tickilish - laughed his way through the whole ultrasound which made it quite difficult for the radiologist to measure and find his organs. The problem we had with the ultrasound which is something I was afraid of was that his stomach and abdomen was so full of gas (air) that she battled to find half of his organs. Luckily she found both kidneys and managed to measure those.
The stomach air I am not sure if it was the air being there then feeding him that caused the gagging episode or if it was the gagging episode that caused the air/gas. It could have been either way round.
All I can sum up is that it was a LONG stressful day for the two of us and I am not looking forward to the DMSA scan tomorrow. I hope he is calmer for that as it's quite a procedure, a long wait and a lengthy scan. The radiology department runs a radioactive solution through his veins and they then have to wait a few hours for the dye to get through his blood system to the kidneys. This test gives the doctors information about any abnormalities in the kidney, how the kidneys drain over time and how much overall work each kidney is doing. I remember from two years ago that it's a whole morning procedure and we had to wait at radiology for the dye to do it's trick. I am hoping that they can inject the dye, allow us to go back to the hospital until it's time for the scan BUT I think I am dreaming. I am going to ask the doc if it's possible to give Jase something to calm him a bit as it's far too traumatic for him, for me and for the radiologists doing the test and then we don't have a great result because he was screaming the whole way through. During the ultrasound today they battled to find half of his organs because of the air. I don't want the same thing happening. We need accurate results and some answers.
Anyway time for me to get some shut eye. I am exhausted but if I don't update the website I will forget half the things and no everyone is on facebook reading the updates. If you are, apologies for repeating myself at stages but I get tired and it's easier for me to copy and paste sometimes.