We are still battling with Jason's terrible bum burns from what it seems like is pure acid. This has been years of Jason going through pure agony of bum burns and I mean really bad ones! It really breaks my heart with every burn - I take a photo of it in order to document and show the doctors what I am talking about. Jason has had these burns for years, from when he was a baby.
I decided to share these pictures to show everyone what I am actually talking about. I know they are graphic but these are just 4 of the photos I have taken in the last 6 months. Now everyone knows what it's like having a burn on your bum but imagine how painful these burns are!! I have had plenty advice of try this cream, try maziena, try egg white, try this powder. Yes these things do help but it doesn't solve the problem of the burns continuously happening and this is why I decided to share the photos - pure acid burn and Jason needs healing from the inside in order to prevent these from re-occurring all the time.
In other news we went to our appointment with the government hospital dietician. No weight gain but no weight loss and this is important. Unfortunately they can't help with the paediasure formula that Jason needs and the only formula that he can tolerate at the moment but they are helping with 10 pump sets a month (each pump set costs about R90) and we use one a night. As crappy as it is taking Jason to a hospital because of the fear of germs and his immune system we are very grateful for the help that we do get from the government hospital. The dieticians are really lovely there and so kind and considerate with trying to help with Jason's diet and eating plan. They would like me to continue with trying to include fruits and vegetables into his diet, try and add fats (which is impossible) and continue to try and get his weight up. I need to try and add a cereal into his eating schedule as well. Something he has never liked. So I have a bit of a challenge on my hands with his diet.
Jason's nephrologist wants to see Jason again regarding his kidneys so we will probably go and see him next weekend after polygam and his urine test. I am not to sure what we can expect. What I do know is his last urine result although it came down to 2, it is still a concern as he is on maximum meds and it is not helping his chronic kidney disease. We shall see what he says and what next weeks test shows.
Polygam is due next week already - feels like it was just last week that we had polygam. I don't think I am going to do an overnight stay after the last polygam. Too many disturbances for us every 2 hours in the night, ear probes being put in Jason's ear to check his temperature, checking his oxygen. It's just too disturbing for us. We shall see. The last two admissions we had to have an overnighter because of the availability of isolation rooms so we may have to do another and can't be too fussy when it comes to admissions. I just want a stress free polygam for Jason and myself, whatever is best for him at the end of the day. It is a long day, usually a 14 hour infusion and these three weeks fly. Before we know it, it's the next admission.
One other thing we need to do which I am concerned about is Jason's 6 year injections (he is 8 years). I have put it off because of being concerned about his immune system and the reaction he may have to them but we could also run into problems if we don't have them. Dr. P said that ideally he should be off polygam for 3 months before we do them but that is not a possibility so we need to do them a week at least before polygam. I'm scared that they may make him sick but also not having them he is at risk.
I've been thinking a lot about my dream of having a book published about Jason. This has been something I really would like to do - a tribute to Jason and basically a book about Jason's journey and the trials and tribulations we have had during his journey. I would like to give other parents hope and advice and this is something I have always wanted to do. One day I will find a publisher interested in Jason's story.
So that's the latest news of the last two weeks. Jason is back at school, swimming and speech therapy has begun again and we are back into a nice routine. Eating is still slow but hey he's eating bits. We are trying to get him to chew which is something he doesn't do. He just swallows whole. Speech/feeding therapy is helping in that department but ideally we need more weekly sessions but have to make do with what we can right now.
Time for some shut eye. I am giving myself a break from feeds tonight and giving Jason's stomach a break as well.