My last post was about Jason's poor bum and burns he is getting from acidic diarrhea. We have a few plans in place now. I have started him on the digestive enzymes and whey protein powder last week. We have to give it time to see if it makes a difference. Jason's nephrologist emailed the pictures to a friend of his who is a gastroenterologist in the US. He has made some suggestions as well. One of the medications he has suggested is trying Cholestryamine which is commonly used to treat diarrhea resulting from bile acid malabsorption. This sounds very positive and sounds like Jason's problem BUT (always a but) when the meds came upstairs it came up in three separate doses to be taken 8 hours apart. So I have enough to last 36 hours. When I went to pharmacy to query getting a monthly dose I was advised that this is a section 21 drug and the doctor has to make a special application for this drug as it is imported and cannot be stocked on the shelf - so don't know our way around this one. I will have to email Jason's doctors to find out the process and see whether this is going to be a possibility for Jason. Also sounds expensive seen as though it is imported - eeek.
Another positive today was I managed to see a wound care specialist. The paed suggested her coming to see the difficulties we are having and how she can help externally with the treatment of these acid burns. She has suggested Opsite spray which is basically a spray that you spray on the area and it creates a film that protects the area. In other words I spray this on Jason's bum area that is prone to burning and this film may protect his bum from the continuous acid burns. They use this a lot in surgery. A stump is no stock but hopefully I will get this spray this week before we get another burn.
Eating wise we haven't seen much eating going on. Jason goes through good patches and bad patches. At the moment I haven't seen too much interest in food at all. Breakfast he hasn't been wanting to eat his egg. He hasn't been interested in boiled eggs either. He eats what I feed him but usually with reluctance when it's proper food like mash and gravy or soup - not ideal. I want him to show an interest in food and eating. I don't know why he is off food but I am hoping it will pass. At school they have been doing lots of cooking which he has been participating in and enjoying but I don't think too much eating either. I guess it is a faze that will pass. I do find it very frustrating as it's hard for me to see the hope of getting off night feeds. As it is he is very skinny and doctors say keep the nutrition up - nutrition has been my life for the past 8 years but when you have diarrhea like Jason, it's going in and coming out just as fast so the body isn't absorbing what he is eating anyway - boo hoo!! I know it's timing and it will happen in Jason's time. I just wish Jason would understand that he has to eat in order to grow and feed his brain. He is growing in height but is still my little skinnymalinks! Night feeds are a nightmare as he wees too much and I have to change him at least 3 times during the night and every night his bedding. I'm very tired of this but I have to keep it up. No way of avoiding it unfortunately. I do give myself a break every now and then but when I do I feel guilty.
A few weeks ago an audiologist came to Jason's school to test all their hearing and ears. I got Jason's audiology report yesterday which said that there is middle ear congestion. I phoned the audiologist today and she confirmed that this congestion could affect Jason's hearing. This is probably related to Jason's chronic sinusitis problem as he is always congested which would affect the middle ear. I spoke to the paed today as well and we just have to keep treating his sinuses with his nasal sprays and hopefully this will improve. The audiologist would like to see us for a follow up to re-test. As I am sitting here Jason is battling with his nose and breathing funny. So another thing I need to focus my attention on.
I am seeing lots of happy, positive photos and feedback from school. Jason loves his little school and you can see the work they do in the pictures we are sent. They are continuously stimulated and pushed to perform at their individual level. An answer to prayers and I thank God every day for such an amazing school right on our doorstep. We are truly blessed to have such a school designed for Jason's specific needs. Bless those teachers and therapists - our little angels in our life.