I must say Jason is doing well with avoiding hospital admissions. He got over the stomach bug he had three weeks ago without dehydrating and needing a drip which is good going for him and a huge relief for Bruce and myself. He had fevers and wasn't well and lost a bit of weight but we managed to get through it.
We do find that nearing octagam he often gets sick. After speaking to both Jason's paed and nephrologist this week it does make sense that his immune system is down at this time nearing octagam and this is when he gets his immune boost from octagam. On Wednesday was octagam and quite a difficult day for Jason. He is so good and I believe he understands that octagam is what is needed to keep him healthy. I always talk him through it before we go for octagam telling him he is going to see Dr. P and going to have his drip for his medication to keep him better. It's hard on me, no octagam is easy. I dread every three weeks having to watch Jason go through being prodded and poked for bloods and the drip. He has such tiny veins and most of them have turned into spider veins which are no good for dripping. On Wednesday they had to try about six times in order to find a decent vein where they could get bloods and one decent enough that could hold for the day for octagam. As much as Jason has a high pain threshold and is so good with allowing the nurses to work on him, shame he came through to me afterwards totally heartbroken and in tears. I will never get use to this, I don't think any mother would. We did discuss a port to avoid having to drip every three weeks but Jason is too high risk for a port and it wouldn't be a good idea having a second "opening" for risk of infection.
On Wednesday whilst in hospital we also had a barium swallow done. Discussing Jason's eating with his speech therapist and dietitian we decided it was a good idea to have a barium done as we were concerned that Jason is at risk of apirating whilst swallowing. Jason whilst eating always gets "congested" and we have to make him cough to clear his throat. The barium went well. I was so dreading it, it isn't easy asking a non eating and drinking child to drink 100mls of a disgusting tasting liquid in front of two complete strangers with a xray machine moving up and down around you whilst you do this. Well Jason did extremely well and allowed me to syringe the barium fluid and he was an absolute star. The results show no reflux and no aspiration which is fantastic news for us. It seems Jason "pools" his formula or food at the back of his throat and doesn't swallow as he should. This is merely something that he is going to have to learn with learning to eat. Wednesday was a long day but at least octagam was done for 3 weeks. Well that's what we thought. On Thursday morning I received a call from the unit manager who advised me that one bottle of octagam wasn't given and we had to go back. I obviously couldn't believe this. I had Jason and Nicole in the car at the time ready for school and work. BUT what can you do, accidents happen. We had to go back and Jason had to go through re-dripping all over again. My poor baby.
On Wednesday afternoon Jason wasn't well, he was very gaggy which I put it down to the barium upsetting him. Thursday after octagam he slept the whole afternoon and on Friday school phoned me to say that he wasn't well. When I arrived at school he was in quite a state, gagging, nauseous, breathing out his mouth, red ears, shivering and goosies all over his body. These are his usual symptoms when he is gagging. No fever though. Friday he slept basically the whole day and I managed to give him small feeds and water.
On Friday morning I received an email from Jason's nephrologist (kidney specialist) to say that the urine test revealed that the urine protein creatinine ration was still too high and he wanted to see me in order to address this. As we know already, Jason has chronic kidney disease. He is on medication for the protein in his urine but the levels are still there and still too high. The test 3 weeks ago also revealed the levels were high and he was hoping that it had come down. I managed to get an appointment on Saturday morning. On examining Jason Prof B advised that his glands in his neck were swollen. He advised that the bloods on Wednesday didn't reveal high CRP levels and he feels that Jason may have a viral infection which is not treatable with antibiotics. He more than likely has what I have. He has a post nasal drip with excess mucous which is obviously causing him to be nauseous and gag. He explained that with Jason being immunedeficient he won't always present with a fever. As he said a fever is good because it means the body is trying to fight the infection. Jason won't always have a fever. This all does make sense and we are hoping that this infection is elevating the protein creatinine levels. We will repeat the urine test again in 3 weeks. If the levels are still high we will have to make changes to his medication for the kidneys. It does concern me that we are having high levels. We know that Jason has chronic kidney disease and we have done all the necessary tests to test the kidneys and see what kind of state they are in but every infection is a risk to his kidneys which is concerning especially due to the fact that he has combined primary immunedeficiency. So the plan is to test again in three weeks.
The rest of the weekend was good. Jason was not well Saturday morning but Saturday afternoon he was fine. We had a family function to go to and I was so pleased that we could make it. I made the decision to take it easy with the feeding and not push him with not feeling well so we held back all feeds and just gave him water to keep him hydrated. He was so full of beans, so happy, so excited, so social. It was lovely to see and lovely to have him enjoying himself without feeling sick. Today he was ok as well. We pushed fluids and held back a little on feeds. Every 3 weeks when he has bloods, his bloods reveal he is dehydrated. I find we give him plenty fluid - formula and water but I have learnt that I am pushing feeds (formula) when I need to focus on water as well. I discussed this with Prof B and he advised that the formula you do count as fluid but we need to give him more water according to the fluid requirements per kg. So this is something we need to focus on.
So we have been up and down, we have missed out on a bit of work and school last week which is a pity but that's how it is with Jason. We never know what tomorrow brings. Hopefully this week will be better. We have a few appointments this week. We are meeting with the feeding clinic tomorrow if we can make it and we have Jason's hearing test on Wednesday.