The kids have just had three weeks school holidays and goodness school holidays are challenging. My two need routine and stimulation and sitting at home for three weeks is very boring for them. Jason is so use to his school routine and friends that he missed his friends, teachers and stimulation terribly. We did manage to get a few days break down with Palm Beach granny and grandpa. Our happy place, always lovely to have some time out with granny and grandpa. My mother in law decided I needed a little break from the struggle of every day life and it was a break I really needed. The kids as well. Unfortunately Bruce couldn't join us because of work and leave but it was a great break for me and the kids. I was entering stress breaking point and a much needed break was exactly what I needed. Sometimes when you are in a situation you don't realize how stressed you actually are. I often find myself just going without stopping and catching a breath. I am sure a lot of you special needs parents are the same. We don't have the choice to stop, to relax and to catch our breath. It's non stop go, go, go. I have to try and remind myself that I need to look after myself. Heck I have gift vouchers for beauty treatments some years old already. Well I promised myself that I am going to use them and pamper myself, a bit of spoiling for me. Also some alone time with my hubby. We don't make enough time for each other, always busy with the kids. Well it's time for some US time, a dinner every now and then without looking over our shoulder, adult conversation. It's very important to make time for each other.
We had polygam last Thursday afternoon which turned into an overnight stay because of the admission time. Yet another challenging overnight stay. I thought overnight stays were better than day admissions but after this last polygam I have changed my mind. It's hard to understand why unless you have stayed in hospital overnight sleeping on a chair with nurses and bin ladies in and out every two hours with drips beeping and polygam bottles finishing. As much as Jason is sleeping most of the infusion, it's a restless sleep. Nurses sticking thermometers in his ear every two hours while he is trying to sleep. The last two infusions ended up being overnight due to the availability of isolation beds. Jason has to have an isolation room due to his immune system. If not we get admitted for polygam and go home with rotavirus or pnemonia.
A bit of a worry for us at the moment is Jason's kidneys. I hate invisible diseases and Jason has two of them. Three weeks ago his urine protein creatinine ratio was 3.15. Last week 2.00. A big worry as you are not meant to have protein in your urine at all. Two years ago we found out that Jason has chronic kidney disease and two years down the line we are still trying to figure it out. Jason's nephrologist is not happy with these levels which is worrisome. Jason is on maximum dose meds for his weight and still not helping to normalize the levels to 0. When Jason is ill the levels can be elevated so we are hoping that this is the case and we will test again later this week again.
One of my favorite sayings is "just keep swimming" and this is what we will do. We will continue to take things one day at a time and continue to have faith and pray for a miracle and a miraculous healing for Jason. What is causing this and what extent of damage we don't know at this stage but one day at a time. Please keep Jason and our family in your prayers.