We have been battling with VERY watery diarrhea for the past 4 days and it was a good chance for Dr P to actually see what I am talking about. When I talk about diarrhea he automatically assumes it is Jason's normal diarrhea but this is pure water and I actually made him come and look in the potty LOL. Well we sent a sample for testing and we will see if anything comes up. Dr. P has put him on an antibiotic though to help clear it ASAP. With Jason we cannot lose any more fluids. As it is he is always dehydrated and not absorbing his food so rather be safe than sorry and do the antibiotic thing to make sure we cover all bases. It's also strange because the previous 3 nights before we weren't able to give Jason his full feeds because of the broken pump so strange that his diarrhoea was worse. Otherwise his bloods were the same as normal, lymphocyte levels are always low (risk of infection), his haemoglobin on the lower side and always dehydrated. Otherwise the blood culture we always wait for and Dr. P has also repeated the stool test for H. Pylori to see if he is clear or not. This we will only know in a few days time.
I am very happy to report that the wonderful staff at our hospital have made a plan for us for Jason's feeding pump. The buyer that I always deal with for pump sets, feeding tubes and who orders our polygam every three weeks has made a plan for us. He kindly got permission from Management and they have loaned us a pump until ours is fixed. I could have kissed him when he arrived and handed me the loaned pump. We are truly blessed to have such wonderful people in our lives. What a relief it was knowing that we could give Jason his full calories that he requires. Every day we go loosing calories he loses weight. I know it's crazy, but we cannot go without night feeds as Jason does not eat on his own or nearly eats enough with syringe feeding every 3 hours and with the diarrhoea he just loses weight.
The fund raiser at the Barnyard Theatre, Gateway, Durban will be on Saturday the 6th April at 8pm. The show is called "Rocking in a free world" and sounds really fantastic. The show will take us on a trip to 12 musical destinations, music from around the world with songs from The Beatles, Cliff Richard and the Shadows, Adel, Amy Winehouse, Roxette, Eddie Grant, Bob Marley, Midnight Oil, INXS, Shania Twain, Celine Dion, Lady Gaga, Pink, Celine Dion, Aerosmith and a whole lot more. The deal is we have to sell a minimum of 50 tickets (5 tables of 10). I have booked and will be paying the deposit this week. As soon as I have finalized the last details I will upload the flyer and start taking bookings. I am sure it's going to be a whole lot of fun and I really hope we can get the support that we need. A portion of the ticket sales will be paid into Jason's trust account and will assist us with medical expenses and therapies. Obviously the more tickets we sell the better chance we have on raising funds to assist with Jason's expenses. I will have the flyer up as soon as I have finalized the last details.
Otherwise Jason is good and his speech is coming along nicely. We have to be really careful what we say now. Today he was practicing his speech and said sh!t a few times. I quickly had to explain that sh!t is not a good word to say. He did miss his therapies once last week because he was gagging, crying and not feeling well which I think had to do with the diarrhoea. The other therapy sessions he said a maximum of two words in speech but they did work on other exercises that didn't require speech. Not the best news going to speech and he says 2 words in half an hour but what can you do. Jason has his good days and his bad days. This was just one of the bad days.
Last Friday Bruce and myself managed to sneak out and go to dinner ALONE for my birthday (it's been almost 6 years). A friend from work very kindly and very bravely offered to look after Jason and Nicole and we were able to go and have a lovely dinner and alone time. The great thing was that Jason ATE some popcorn all on his own. My friend's little boy was eating popcorn and so was Nicole and when Jason was offered some he actually ate a few pieces himself :-). The next day he woke up and ate about 3 pieces and when we went to my folks he had to have his piece of popcorn with him and held it in his hand almost the whole way there and eventually ate it in the car. Great progress!! Guess who will be baby sitting more often he he.