Today the diarrhea wasn't too bad but we are having really high fevers. I noticed this morning that Jason did a cough which was strange because he hasn't had a cough previously. I had a PINSA (primary immunodeficiency network of SA) meeting today which I made a plan to get to. I don't like to leave Jason but I decided that this was important to go to as we would be meeting some important doctors as well as the KZN parents. The meeting was great, very informative and very well organized. It was nice to be in a room full of parents that understood exactly what we go through with our kids. Anyway after the meeting when I got back to the hospital Bruce told me that Jason was still having fever spikes and Dr. P took bloods and had tested for swine flu and H influenza. The full bloods revealed the same that this is a viral infection, not a bacterial infection. His potassium levels are low and they need to add potassium to his drip. The fevers are still very high. The last one was 39.6. His tummy not as bad as it was. Hopefully by Monday we will know if it's swine flu or H influenza. Jason has had H Influenza before and it is quite nasty and not so easy to get rid of. Jason has a lot of the symptoms of swine flu as well. We are still waiting for the results of the stool test. The lab had not tested for rotavirus or norovirus yet so Dr. Pather has told them to move it up and test for this. By the time they do, he won't have it anymore anyway. Taking so long!!
So Jason is still being nebbed, is on two antibiotics, fever meds and now receiving physio as well. These fevers are worrying me as they are so frequent. I am happy he is getting some milk in his tummy which is now at 45mls an hour. I am taking it slow and don't want to rush it and he feels sick. His face is quite puffy as you can see in the picture. This is because of the low potassium levels. What happens is you retain water. We are waiting for the potassium but of course it is Saturday night, pharmacy is closed, paeds and maternity don't have. So we are waiting to see if we can get some. I don't know how urgent it is?? Does worry me because of his kidneys though. We have left a message for Dr. P to find out what to do and whether it can wait until tomorrow.
Today at the PINSA meeting I was able to speak to a paed who has a patient with mitochondrial disease. In order to test we will have to fly to Pretoria to do the muscle biopsy and get the muscle to London ASAP via a courier company. A bit disappointed that we can't do it at the same time as the urology operation as this means two anaesthetics plus a flight and doctors we don't know BUT I don't want to leave this. I need to know if Jason has mitochondrial disease. It is quite important. I know who to contact now and I actually contacted the doctor last week. So hopefully I will get a reply soon to explain how this all works.
Besides the fevers today Jason is looking a lot better though. Hopefully he has turned the corner and is on the road to recovery. His tummy isn't right yet though and obviously the fevers and hydration are a problem and also the feeding. So we won't be going anywhere anytime soon. So seems like we will still be here next week. We will probably only know the blood results on Monday for swine flu and H influenza. So for now we sit tight in our home away from home. Missing my own cooking and hospital food is never nice especially when you are eating off the kiddie menu. I eat Jason's meals otherwise I will have to pay extra for my meals. My chicken the other night, I am sure it died of old age. Tonight I couldn't take another hospital meal so got take away which was delicious.
Anyway this mommy is tired. An early night is in order for me. I need to get some rest. Time to curl up on my chair soon and get our little man to bed. Night, night everyone. Please say a prayer for Jason tonight again xxx