12 April at 15:55
I can't explain what this does to my heart. Jason's award today 😁.
Polygam infusion day today. Blessed by all the blood donors. There is quite a shortage at the moment so lucky to have sourced our 24 grams.
21 April at 10:44
Not having a good time. Poked 4 times and drip on his thumb. How's he going to play games and machine will probably beep all day because of site being positional. Got here just after 8am. Polygam was still in pharmacy this morning which was meant to be sent up yesterday. Doctor left no notes for bloods to be done. Polygam only started 2 and a half hours later. Ward full full full. Fun and games. Polygam takes at least 12 hours. Going at 15mls an hour but can't rush a foreign liquid in his body. Going to be a long day.
Moan over!!
So 5 hours later we have only done 200mls. 600mls to go and I think I'm kidding myself if we are going home tonight 😒. Looks like we are here for the night.
Jason's nephrologist wants to see us and will hopefully make it tonight if he doesn't get called out. To me this means 1 thing - kidney biopsy 😌. His protein creatine levels have been high every time we test which is every three weeks. He's on medication for this and we've done all the tests except for the biopsy. This is really freaking me out at the moment and it's hard not to stress about the prospect of a kidney biopsy and week in hospital far from home. I guess I am getting ahead of myself but I kind of know it's what we need to do.
In other news. Happy news is Jason did very well with his stew AND rice today
About an hour to go until polygam is finished.
We saw the nephrologist tonight. He is being cautious and does not want to rush into the kidney biopsy which is a good thing. He said in Jason's case his levels aren't high enough to convince him that the the biopsy is the way to go but also his levels are not normal either. He is borderline which makes his decision hard. He has to think about Jason's immunodeficiency which is a big thing if he's looking at treating with steroids and also his gut issues that are a huge problem. A biopsy can give him answers but it could also give him no answers and any procedure like this is invasive and has risks. He is going to run Jason's results and case with a colleague of his in America and get a second opinion. He will get back to me as soon as he has made a decision and received the second opinion. This may take a few weeks as his colleague is away at the moment.
I do feel relieved that no biopsy is on the cards just yet. This is stressful these decisions we have to make for our child.
22 April at 10:55
So after a long day and night in hospital yesterday, Jason managed to wake up this morning and make his school outing with his friends and teachers. He's having a blast. Lovely getting updates from school 😁. Thank you Bloom Centre, amazing school for our little ones.
The funny things kids say :-
Tonight Jason is playing with my hair and comes across my mole on my head. He parts my hair so he can see my mole clearly. When he sees it, he announces "oh my gosh look at your brain" 😂
His speech is coming along nicely 😁