How is Jason doing??? Not too good at the moment. I am actually at home with him as he is not well. It was inevitable. I caught bronchitis from who knows where and have been coughing for weeks. I was afraid Jason and Nicole would get it and trues bob both of them got it :-(. Well there is lots of bugs and gogas going around at the moment. Most people I chat to they are either sick or their kids are sick. I guess it's that time of the year. The weather at the moment is one day it is a gorgeous 32 degrees, the next day raining and cold. Winds blowing one way and then the next. That's October for you in Durban.
Between this update and the previous one we had an admission with Nicole for 4 days as she had bronchial pneumonia. She has had a lot of chest problems this year coughing a lot and this was our first admission with her. Hopefully never again lol. We were lucky Jason managed to avoid this one amazingly enough.
So both kids are sick at the moment. Both coughing and fevers. Nicole she manages but with Jason being immunodeficient and with his feeding and absorption issues he gets it really bad. On Thursday he started with diarrhea and on Friday we got admitted for octagam and Nicole's ENT procedure. Friday, Saturday and Sunday he had many poo nappies. We sent off a stool sample on Friday and that has come back negative for all the usual. When Dr. P examined him he asked me what he had been eating. Nothing of course but he was concerned as his tongue was white. I assume thrush. His bloods were ok except his lymphocyte levels were low indicating infection. He decided to put Jason on an antibiotic just to cover it. Thank goodness he did as he started with fevers and coughing on Sunday. Yesterday I thought we were headed for an admission again. His fevers got up to 39.7. Today they are a bit better but at the moment 38.2 and he is not well. His ears are read, face is pale with rosy cheeks, skin is clear and motley, mouth open and dry. He is chesty and breathing through his mouth because his nose is blocked up. His stomach isn't right either. Griping, peristalsis movements and bloated. All of these symptoms he has had before and seem to come with fevers. The see-through skin scared me a lot as well as the mottled skin. When I googled this of course everything pointed to malnutrition. Makes sense as he isn't absorbing his food!!
I really hope we don't end up getting admitted. I am trying my best to nurse him at home and keep him out of hospital. I am keeping him hydrated and medicating him for the fevers. BUT I know sometimes the best thing for him unfortunately is a drip. It's amazing how as soon as he receives a drip he automatically changes and comes right after a few minutes. That's what concerns me. What goes in is coming out and as much as I try and keep him hydrated I cannot do what a drip can do :-(. Yesterday I even cooked two meals IN CASE we get admitted. It's so frustrating, so sad that we have to live like this.
Feeding wise I am battling. The dieticians I am seeing would like to try more solid foods which I am trying but they aren't having the effect that we would like them to. The good news is he has grown 3cm in height since his last weigh in but he has lost weight. No matter what I do, no matter what I try it just doesn't work. He seems to handle the Neocate the best BUT Neocate is a baby formula and as much as we are concentrating it, it isn't enough for weight gain. I am trying very bland blends like chicken soups, mashed potatoes, mash and gravy but with the diarrhea I am not sure if this is doing more good or harm or if this is just a co-incidence. I am working closely with Jason''s dietician who has been with us for years. She is amazing and she totally understands Jason. She knows how easily something can trigger gagging/vomiting/diarrhea. We are very lucky and blessed to have her. I wish I could just blend the food that we are eating, that would be awesome but anything with too much fat, too much oil, the wrong spice etc. triggers a bad reaction. We are a bit stumped at the moment but we continue to try and find something that works for Jason.
We have had some good times between this post and the last. Not all bad stuff. We managed to go down the coast to see granny and grandpa for a wonderful week long holiday. Everyone was healthy and happy and it was awesome to have some good quality family/friend time. The kids were happy and healthy and had a fantastic time with granny and grandpa down on the beach.
Jason's speech is coming along nicely as well. We have missed quite a lot of therapy with the holidays and now with him sick but the words he is coming out with is amazing. Great progress. He is also starting to get naughty :-) Finally at 6 years old we are seeing signs of naughtiness.
I have also sent off Jason's registration forms for the new special needs school that will be right in our home town. How blessed are we? Prayers have been answered and Jason will be able to go to a lovely little school here equipped for his needs. The school day will also include speech and occupational therapy.
So we just need to get over this little hiccup of both Jason and Nicole being sick. Please all pray for our little man. I know a lot of you do pray for him all the time but we really need some extra prayers for us to avoid an admission and weight loss.
Thank you to everyone for your prayers