By this afternoon he was looking a lot better, even got out of bed and walked around a bit with his drip stand. Played on my computer and watched dvd’s. We waited the whole day to see Dr. S (the stand in paed) hoping that we would at least have some input. I didn’t think we were going home and by this afternoon had made up my mind that we were going to stay anyway. Shame Dr. S got here at 7:00pm as he was obviously busy in his practice and had 3 patients on ventilation and he actually lost one (very sad). These doctors are truly amazing how they are so dedicated to their work and the long hours they work, having not much family life at all! Anyway Dr. S examined Jason. He was not happy with his hydration. He said that his eyes are still very sunk in, his mouth is still very dry and he still looks very dehydrated. He is therefore not happy to discharge until the pooing eases off. We have stopped some of the medication but he said two of the antibiotics is actually for the diarrhoea and therefore have to continue for now.
I was a bit cheeky this evening being gatvol having been here for 6 days on all
this medication and no actual diagnosis so I managed to have a long conversation with Dr. S about Jason. He knows Jason from two years back as he saw to Jason once when Dr. P was off. As far as this admission, as he said Jason is negative for rotavirus, adenovirus, norovirus and salmonella, all the common virus and bacteria doing their rounds. He has tested for the tick bite but the results are pending and he has also tested for another specific bacterium that it may be and these results are also pending. If these two come back negative he has no idea what it could be! Hopefully these results won’t take too long.
We also discussed Jason and his other issues being the vomiting, gagging and diarrhoea that he gets periodically. We discussed the different diseases (which there are plenty). Things like coeliac disease, crohn's disease etc. All of these are diseases of the gut which have intermittent vomiting and diarrhoea episodes. He said in order to test for these; this would mean sedation, an endoscope and biopsies. Obviously we can’t do this now anyway with Jason being sick plus we do not have a paediatric surgeon in this hospital. A CT scan of the stomach and colon would not help; the best way would be to actually go in. ONE big problem though is while in Austria we saw a paediatric gastroenterologist who did an endoscope and a colonoscopy and a whole lot of biopsies and saw all the organs BUT the report from this is 28 pages long and is in German. Dr. S said what we really need is this report in English so we are not repeating any tests and can actually read up what has been done. Also from a cost factor there is no point in doing any of these tests if they have been done already. A few months back I queried the translation of this report ant the cost to do the translation is 50 euros a page. Now if you convert that to South African rands, that is about R15,000.00. I am really trying to find a German DOCTOR that understands the medical terms that can translate it for me but unfortunately that is just not happening. I have had two basic translations by two people that speak German and English but we really need the whole document translated by someone who understands the medical terminology. Any German DOCTORS out there???
As Dr. S and I discussed, the medical field in South Africa is not like overseas. We do not have the technology for the tests that Jason needs. We do not have an immunologist, the genetic testing here is NOTHING compared to the likes of the UK, which we have found out by waiting a year and a half for a chromosome test because they are “short staffed”. We can send the blood overseas but that will cost R15,000.00! All these tests cost and as Dr. S said to me tonight that the day we find the diagnosis for Jason I must make sure Dr. P lets him know!! Ag I don’t know I asked Dr. S tonight if these pediatritions run away from cases like Jason. He said no they don’t but in a case like Jason, there aren’t many recorded cases here in South Africa and the technology for testing is just not available. So being in South Africa we just have to test by ruling out and these things take time (years we have realized) and these things cost and with Jason’s history of getting sick all the time, a lot of the time we cannot do these tests because he is ill or on medication.
A lot of people are asking me how I am holding up. I guess that is a normal question to ask. I am holding up fine, I am strong. I am not down or depressed,
actually quite the opposite. I am more determined than anything to try and get
answers for my child. I don’t have time to sit here and cry and fall apart. Maybe it will hit me when I get home but for now I have to be strong for Jason and for Bruce and for Nicole. Falling apart isn’t going to help. I will more than likely have a few moments when I get home because the stress of worrying about keeping Jason well and hydrated with this illness will be over. I do have ulcers in my mouth, eczema on my hands, I have been sleeping on a blow up bed for 6 nights, eating hospital food, I have a tax deadline at work at the end of January, every day I don't work, I don't get paid but hey we are in the right place and as long as Jason is getting the medical treatment he needs I will sit here for as long as I need to and I can't worry about those things. I will worry about them when Jason is better. I miss my husband and I miss my 9 month old baby who I haven’t seen in 6 days. I haven’t been home because Nicole is doing fine. Bruce is doing a fantastic job caring for her and I don’t want her to see me for a short time and “rock the boat”. My darling husband, shame he is doing so much (good for him, I know). He is looking after our baby, he is going to work, he is delivering plants back and forth to work, he is running back and forth to the hospital plus he has to cook and see to himself and Nicole. He is tired as much as I am tired BUT we work as a team. Situations like this can make or break a marriage. We have had a hard time with Jason for 5 and a half years but we are still together, we still love each other as much as we did the day we married. He is my soul mate, my best friend and the most wonderful husband and father and I love him very much!
Oops I have rambled on and on as usual – so sorry!! But hey this is my blog, this is my diary and I like to write what I am thinking. My blog is therapeutic for me and I know I have lots of friends that like to read about Jason and want to know how he is doing. I mean obviously if my blog is boring and you don’t want to read it then why are you reading it? All right for those of you on the Facebook group, I added you on the group without you requesting to join but again if you don’t want to read it you can chose not to (he he).
Night Night everyone. Tomorrow is another day!!