Jason has been doing pretty well apart from a few minor hicups along the way. We have had a bit of a nasty feeding tube site that has been bleeding with granuloma. Granuloma is skin that forms around the tube site which Jason isn't too prone to thank goodness. His site has been oozing and bleeding. We have burnt it with a caustic pen but I need to repeat this again myself as we did this 3 weeks ago whilst in for polygam and still there is fresh skin growing. Luckily Jason doesn't feel too much pain so he seems okay.
The polygam 6 weeks ago we did his usual urine protein creatinine test which revealed a result of 153, previous result 121 and Jason's nephrologist (kidney specialist) is concerned by the levels. We had polygam last week and repeated the test and also had an appointment with the nephrologist to discuss the way forward. The result on Thursday was 69 so it has dropped a lot. As Jason's nephrologist said he is concerned by the high levels that keep revealing on the urine tests. Normal is less than 20. The problem he is having is he doesn't want to and can't just go ahead and do a kidney biopsy without a good enough reason for both himself and medical aid. The biopsy is an invasive procedure and has risks and all the other kidney tests we have done in the past haven't given him much to go on to warrant a biopsy. So what we would like to do is see the next result and make a decision then. He would like to do a 24 hour urine protein creatinine test that will give him a better idea as well.
With Jason's digestive and stomach issues as well, we need to do an endoscope as well as a colonoscopy and take biopsies for testing of illnesses and rare diseases. This will give us an idea whether these issues fall under an illness, a bacteria living in his stomach lining or whether this is related to a rare disease or the rare disease that they think he has which is mitochondrial disease. To confirm the mitochondrial disease we need to do a muscle biopsy but I have been reluctant to do that as again this is another procedure and I was told by the specialist in South Africa that deals with mitochondrial illnesses she would prefer the muscle biopsy done in Pretoria due to transportation and the state in which the muscle tissue arrives from KwaZulu Natal to Pretoria. So this would mean flights to Pretoria, a hospital admission in Pretoria and a procedure that will require another anaesthetic. As much as it would be great to know if we can tick or cross this rare disrase off, it's a tough decision to make when we have so much else going on with Jason and his illnesses and finances don't allow us to do everything. We have to tackle one thing at a time. Mitochondrial disease isn't a nice disease to have as the failure of mitochondria in cells can cause havoc on different parts of the body and vital organs. So for example the kidney problems, the digestive problems, the immunodeficiency and cyclic vomitimg could all fall under mitochondrial disease. It's a tough call to make but as Jason's specialists have said, a diagnosis will not change the treatment plan. There is no treatment for mitochondrial disease and there is no cure. So basically we are treating his symptoms as they arise. We are treating his immunodeficiency with 3 weekly polygam infusions, he is on medication for his cyclic vomiting (currently not at the moment though as we're battling to source stock), we are trying to figure out the kidney issues and the digestion and gut issues we would like to do the colonoscopy, endoscope and biopsies.
It's a lot of decisions we as parents have to make and with illnesses, so many more questions than answers it's hard to make the right decisions at the right time. These symptoms and problems manifest themselves at different stages and yes do re-occur but having so much wrong and so many "illnesses and diseases" as well as a peg feeding tube and feeding difficulties we're bound to have these problems and hicups along the way.
For me the way forward is wait on the next urine result when we do the next polygam, see what the nephrologist says, get admitted for the 24 hour urine test and any other tests he requires and do the colonoscopy and endoscope so that we can tick or cross that box of questions as well. A process of elimination.
On a different note I am proud to say that I have overcome my fear this past week. I became a first time blood donor. My fear wasn't the needles or the fact of having my blood taken. My fear was an emotional barrier that I have been carrying for some time. I have been wanting to donate blood for years but with Jason's history of blood transfusions, platelets and polygam (human IGG) I have had this enormous emotional barrier to overcome with walking into the donor clinic bravely and sit through a blood donation and hold it together emotionally because of what I have been through with Jason. It may sound ridiculous but it was a huge deal for me and I donated my first bag of blood, overcome my emotional barrier and I intend on being a regular donor.