Going through a lot of mixed emotions since seeing Jason's nephrologist yesterday.
The time has come for us to do some more investigations into Jason's kidney problems.
We have been keeping a close eye on the protein creatinine ratio in Jason's urine and every test reveals high levels for the past two years. Including when Jason is healthy which is a concern.
Jason's nephrologist has been amazing with his care and hasn't wanted to rush into it and be too invasive but Jason is strong and doing well and he needs to do the kidney biopsy to know what we are dealing with. The high levels of protein is a big concern for him and he needs to go in.
So next month we will be admitted for a week to do the tests needed and the kidney biopsy.
The good thing is this will give us the answers we need but doesn't take away the anxiety I am feeling right now with my little man going through these tests and going to theatre for the biopsy.
This also means a week away from my baby girl and Bruce and a week off work during my tax deadline which also means a loss in income for those 5 days off work. Lots of pressure for me but I know that I can do my best to get my work done before we are admitted. This needs to be done for Jason and family comes first. My job is very important to me and I love my job. This is something that can't wait though.
Our last appointment with the dietitian was also a tough one for me. I was advised that government will not help with formula anymore because Jason is "doing well" and not "failure to thrive". As much as I know Jason is not failure to thrive, the reason is because he is still on his night feeds and does rely on his formula for nutrition. Without his night feeds he would not be thriving. Yes I would LOVE to stop his night feeds but at this stage we can't. A big blow for us financially without the help of formula and pump sets but that's life and we have been blessed to get that help in the past. As with all things one door closes and another is opened. There's always a reason for things.
The last two weeks we have been battling with Jason waking up at night and moving around. I sometimes find him on the floor (attached to his pump) which is a concern that he pulls out his feeding tube. When I stop his feeds I often find him sleeping on the couch. He has been rubbing his legs and I am thinking maybe it is growing pains. Amazing that he is getting these feelings and sensations because his pain threshold and feelings aren't something he has had in the past.
Jason's bum is raw raw raw again. I have been using antipeol and sudocrem but not helping. Jason's nephrologist has put him on nexium to see if it helps with the stomach acid.
Kids are now on a weeks school holidays. I have managed to put Nicole into holiday club but unfortunately for Jason he will have to stay home. There are no schools prepared to take a special needs 8 year old that doesn't eat and still in nappies and also I have to be careful of bugs and infections with his immunodeficiency. Luckily these holidays aren't too long and Jason is pretty easy going at home. He will certainly be bored but only for 4 days as we have polygam this week so one day with mommy.