Hi everyone, well it’s been a few days since I came on here to let you all know what was happening with Caitie … But here I am.
First of all, I would like to wish all the mums out there a very happy mothers day for yesterday … I spent half my day at home, and the other half at the hospital with Caitie … But all in all, after breakfast in bed, I had an okay day. Obviously it would have been better if I had all my kids with me at home, but ya gotta be happy with what ya get.
Anyways, as you’re all probably aware, Caitie is still in hospital .. It’s been 8 days now … So here’s a run down.
She went into hospital last Sunday night / early Monday morning. After a few hours in emergency, she was admitted and sent upstairs. She had copious amounts of pain relief and an enormous amount of dextrose, but it still didn’t do anything. On Wednesday, the drs decided that ANOTHER PIK line would be going in, and the hemetin would start again. Well, the PIk didn’t go in until Thursday afternoon, and the hemetin didn’t start until Friday, and she was only given 2 days treatment. Radiology had a little trouble getting the PiK in, as her veins are pretty shot, 1 of the veins collapsed whilst they were trying, but they managed to get it into a larger one.
Before they can put a PiK in, they need to check the coagulants in the blood, meaning they need to check for clotting etc, the drs tried and tried to get blood .. The vial they use is only like a 5ml tube, and after 11 attempts, and only a third of the vial, they decided to go straight into the artery. The dr came in, told us what he was going to do, we all freaked a little, he dug extremely deep but got the blood required. Caities arm was a little sore, but nothing to major. With the coags done, we were off to radiology and the PIk was inserted.
We have been having an ongoing argument with the drs about the amount of times they try and get blood, or put a canular in, how distressing it is for Caitie to be “stabbed” so many times, and the fact that she has had 4 PIkS in 3 weeks, 1 of which didn’t work .. We have been asking them to leave the line in so Caitie doesn’t have to go through it, but they keep refusing. Anyway, the dr came in on Friday morning, after a meeting with the medical director, told us that the PIk couldn’t stay in … BUT, they were considering putting in a portacath ( however its spelt). Apparently, it’s a little safer than the line, but it’s a bit more invasive and requires a sedation to be put in.
That’s what it looks like .. Well I think that’s it, I may be totally wrong. If I am, I will put up a correct picture when I find one.
Anyway, it needs to be put in by surgeons, and as far as we are aware, it will be going in, we’re just not sure when.
So, Caitie has had a really rough time with this hospital visit .. She’s been touched with latex gloves, been in absolute agony, had to wait for treatment, even the basic treatment hasn’t been done when it’s supposed to have been, been pricked so many times I’ve lost count, been feeling so sick and not sleeping very well at all. Her pain level has been that high that she is now on a PCA with morphine running straight through and is having subcutaneous morphine through a butterfly ..
This is inserted under the skin in caities stomach and the morphine is pushed through it.
It takes about 20 minutes or so to disperse and is supposed to last a little longer that IV morphine, but it hasn’t seemed to be working to well at all, well not at the moment anyway.
So today is Monday, the drs are trying to work out how to help Caitie, and at this point in time, they haven’t come up with much at all .. Although, I will say, her dr isn’t going to give up so that’s a plus.
I’ll be back soon with another update .. Have a good one everyone 🙂
Caities Porphyria 