Well things have been chugging along here.
We have come up with a good morphine/anti-nausea med schedule that is controlling the pain very well so that is a relief. Unfortunately I have the metabolism of a mouse so it means small doses of morphine every 2 hours by IV - but thankfully since I am in hospital the nurses just do it automatically and I don't have to remember anything... remembering to blink is hard enough for me - I can't imagine remember a med schedule that involves 'every-2-hours' of anything.
So the good news is I'm officially 'pain-controlled' which is a very big step.
The down side is that's only half the equation.
I had my hissy fit yesterday about the lack of an explanation for the pain.
I had a second hissy fit today (OK maybe not - I have a new attending and he's very pretty - so my hissy fit might have been more like me drooling and saying 'yes doctor' while batting my eyelashes - but the good news is the new attending is very proactive and wants to get to the bottom of this, so my inability to stop staring at his jawline was likely not too detrimental to my care).
The docs all agreed this morning that it's time to ramp up the investigation and figure out WHY I am in so much pain (that only took 2 weeks).
So this morning they did more labs, and it turns out my bloodwork is suspiciously looking 'infectious', and 'progressively infectious' at that (just meaning that my blood cells have gotten more and more unbalanced over the past week - they are not totally outrageously abnormal yet, but he said the 'trend' is definately pointing towards an infection that is going on). So they finally bit the bullet and ordered an abdominal CT scan today. They are specifically looking for an abcess in my abdomen, likely caused by the tube. This would be 'good' in that it's a cause we can treat. This would also not be unexpected as I am on immunosuppresants, so certainly an infection would not be a surprise.
I didn't think I'd say I was 'hoping' for an abcess, but at this stage in the game, if it is NOT an abcess, I don't think they have any clue what to do next.
So fingers crossed..
Otherwise things are plodding along quite well.
Dave is home with the boys full time and I think it has made a HUGE difference for both him and the boys. The stress of child care is gone and the boys have their dad which they desperately need right now.
The boys are doing surprisingly well considering they have been sans-mom for the better part of 2 months now. We talk every night on speaker phone which helps, but it's not the same as having mom. That has been very hard on all of us - I miss being a family. I cannot wait to get home and be with them every day again. But the boys have done very well in spite of it. I think largely because of family support - they have had my parents and Dave's parents and other family members helping out so much and because of that help we have been able to minimize the disruption to their normal schedule, which helps tremendously in keeping them calm and happy.
So that is a huge relief...
Life goes on.
My central line went in yesterday, it was a breeze thankfully - so I now have the central line (Hickman) that comes out of my chest just below my collar bone (no more scoop neck shirts unless I want to scare everyone), and I still have my large bore central line (Vas Cath) that comes out of the side of my neck (gotta find some turtle necks!). Throw in the feeding tube, and the implant in my heart from when they repaired the hole and the running joke is I am turning into robo-cop.... I am wondering if they can implant a lighter in my pinkie finger next time their mucking around with me.
But the central line is a big step to going home!! I should start training on how to do the TPN and line care this week, and if we can get the pain figured out and dealt with I might get to go home late next week!!! (that's a big might - but I cant stop myself from getting excited by it!).
Mayo we are still waiting to hear from. The ball is in their court and we are waiting on an appointment date now. Could be next week, could be next year - no clue at all... I will start pushing them to followup later this week if we don't hear from them.
Progress is slow - but it's progress. We're going in the right direction.
Thanks for checking...
Well things have been chugging along here.