Our little man is looking and feeling a lot better. We haven't had any temperature spikes since 5pm yesterday afternoon. Feeding is going well, I am even managing 200ml bolus feeds and therefore we can get some catch up growth. It's amazing what the right formula can do!!! I can actually see Jason's cheeks and legs have started to fill out. A huge difference from where he was last week. The formula is pricey but at least we will get a nice discount and at least it is staying IN and not coming straight back out. Jason's colouring in his skin is looking so much better as well. Not so white and transparent. His eyes aren't as dark underneath and he is just looking so much better.
I was really hoping that we would be home tomorrow for Mother's day but Dr. P told me that the one antibiotic he is on for the Candida only comes in IV form and we therefore have to stay for the course which is minimum of 5 days. We are on day 3 today. I was a bit disappointed as I would have liked to have spent Mother's day with both my children together and Bruce but we can celebrate all these things when we get home. Besides things are going so well what's another few days. As long as Jason gets better, that's the main thing!!
We received another 20 pound donation today. Thank you SO much, every donation goes towards buying Jason's Neocate, pump sets and feeding bags. Because Jason is immunodeficient we cannot take any chances by cleaning and sterilizing the pump sets and bags. We use to but have been advised NOT to as Jason is at risk of infections. I still have to work on getting prices and buying these supplies for when we are discharged. While we are here medical aid is paying. I have added a new tab on the left called "Jason's monthly expenses" to give you all an idea of Jason's needs and the expenses. I still need to get prices for a few things.
I saw Dr. P and Prof B today. They are both really pleased that Jason is looking so much better. The herpes test was negative so Jason does not have herpes. They had to rule it out as it was a concern for them. Otherwise I had a long chat with Prof B today. He really is amazing, he is a Professor (kidney specialist for short) and wow he is so knowledgeable and even though he is a Professor he is so down to earth and so patient and kind and answers all my questions and explains everything so nicely. I have been worried about Jason's Kidney problems. The Prof explained to me today that he cannot do any further tests to test Jason's kidneys as all blood and urine tests will have false readings due to all the medication he is on. We will therefore have to look into this once Jason is well and off the antibiotics. For now the medication that he has put Jason on will prevent further damage. As he said we are lucky that we caught it now and not later in life where the damage is irreversible. Jason has had this all his life, it was picked up on the ultrasound when he was still in my tummy. Unfortunately this was overlooked and not investigated after Jason was born. The Motilium medication he has put Jason on will help to treat the nausea, vomiting and gastroparesis and it is also known to treat reflux. He has received a response from the pediatric Gastroenterologist in New Hampshire Hospital for Children. We will call him Dr. S. Well Dr. S has a whole lot of questions and has asked for further medical tests and reports to be sent to him for further investigation. He has a whole lot of questions which Dr. P and Prof B will have to answer and hopefully we will get further information regarding Jason's gut problem. I hope they action on this fast while we are here!!
I must say being here in hospital for this month has forced the doctors to live our lives for a change. It has been a good exercise for them to see what we go through with Jason on a daily basis.
Anyway it is way past my bed time. I must really get some sleep. For those of you celebrating Mother's day tomorrow. Happy Mother's day to all of you!! xxx