On Tuesday night I opened the box of delivered milk (Nutrini Peptisorb) ready to feed him while he sleeps and thank goodness I looked at the expiry date, all 27 units that were delivered had expired on the 10th January! That would have just made him so much worse giving him expired milk!! So after no food all day we couldn't even feed him that night and we were stuck with no milk for Jason. The hospital pharmacy and Nutricia came to our rescue and we managed to get 8 units on Wednesday afternoon. After many calls and emails to both Nutricia and CDM we managed to get the 27 units replaced today!
On Wednesday Jason still wasn't well so I stayed home with him and made an appointment to see the Paediatritian. As soon as I fed him again his temperature shot up and he was gagging and fell asleep for 2 hours. The paed has adjusted the dose of the antibiotics (increased the dose) to see if that helps but he said Jason also has a post nasal drip which could also be aggrevating the gagging. Also the H Pylori bacteria needs to be killed and the antibiotics doesn't help the diarrhoea either. The paed advised me that Jason's red cell count and neutrophils (white cell count) are both very low which means he will catch any bacteria and virus going around. He said that we need to keep him off school for at least 2 weeks to avoid him getting sick! So that's 2 weeks without school and stimulation. In the mornings I have to see how he is and if not well I stay home with him otherwise he is home with my domestic worker that looks after Nicole and I am 2 minutes from home (work mornings only). The paed also said that he would call Jason's surgeon to discuss the possibility of an endoscope to see what's going on inside and to do biopsies to check for Coeliac disease and Crohn's disease and basically have a good look at what is going on in his stomach and his oesophagus. This will also give us an idea if he is refluxing or not.
Yesterday he seemed fine, was fine in the morning and when I got home he was sleeping. We had speech and occupational therapy in the afternoon. When he woke up he was gagging a little but I decided to take him anyway as we have had times where he has been gagging and not well and then all of a sudden he is fine. Well he wasn't well. The therapists were all horified when they saw him (I am so use to it). We waited a while but he just gagged and gagged and gagged, his ears were blood red and he was so pale. We did try but it was a no go! Not long after going home he was fine again but obviously I couldn't feed him until the late afternoon. It's crazy how he changes!!
What is happening with Jason is food hits his stomach, his temperature shoots up and he is violently ill. It doesn't matter what food it is, stews, soups, custard, yoghurt. He eats and he is sick! We have tried a no dairy period and still he gets sick. I am not sure if it is this H Pylori virus or not but I hope that the increase in medication will help make him feel better soon!!
Next Friday is polygam. By then his medication will be finished and we can check his bloods again and see how he has been this next week.
As Dr. P said to me we need to go overseas maybe to the UK where Jason can be evaluated there and have all the tests that he needs. South Africa doesn't have the technology for the kind of blood tests that Jason needs - genetic, chromosome, DNA and specific tests for specific conditions. If we had to send the blood there via courier it would actually work out cheaper for Jason and myself to fly there and see the specialists and do the tests while there rather. This is quite a scary thought for me, a huge step to take and financially we don't have the funds for it. For now I will put it at the back of my mind and see where we go with the next few weeks. The paed also discussed putting Jason on a chronic antibiotic that he will take every day. I am not so keen on this idea but if this is what we have to do I guess we will have to do it.
There is one more option that I would like to try. I chatted to a homeopath on Thursday about Jason and he seems to think he can help. He has treated some children who are immunodeficient and also can help with the nausea and diarrhoea. I have never tried homeopathy but I think it's worth a try before we decide to go onto a chronic antibiotic.
Today Jason was a lot better, no gagging or vomiting but still diarrhoea. At least we could feed him today!!!