Decisions to be made

So, We are still in the hospital. Quinn had an endocrinology work up and  there were no real abnormalities found in her bloodwork except that her cortisol level was found to be low. The endo feels like the level was drawn 3 hours too early and so she wants it redrawn today (which is what they did). So we should get those results this afternoon. if the levels are found to be low again, she will need to be treated for it and it would explain her low blood sugars. As well as her low blood pressure and a couple of other weird "Quinn" symptoms.

Quinn is funny. Our first 36 hours here, Q's tummy was fine, actually. but, since she follows her schedule pretty much right on, I KNEW she was going to be ok on that day. It's just the way her tummy works. I called it and i was right. So on monday, she had a bad tummy day. she was puking, pushing out bile, her tummy was big and bloated everything was painful. given her bad day, it was still not one of the worst "bad" days we have seen, but her docs got to have a piece of what i'm going through. i showed the nurse who was taking care of her on her "good day" her "bad day" tummy and she was so surprised. Because she hadn't looked like that the day before.

so, Quinn's GI doc is the one that is on her team this week which makes a WORLD of a difference because he really cares about Quinn. He also knows all the crazy stuff we have tried to keep her tummy working. We discussed a lot of stuff. He really wants her on TPN at home, or he wants us to try it because he thinks it will help her through the bad tummy days. After posting on my trusty P2P board and asking family and some FB friends, I thought it would be more beneficial to have her on just IV fluids to push her through her rough patches instead of TPN. The problem with TPN is that it needs to be run continuously and scheduled... so i can't just start it up if she is having a bad day. Plus, labs need to be continuously monitored. I just don't think Quinn is "that bad" yet to need tpn. She's growing on her J feeds. Granted, it's very painful for her, but it's still working. she's not underweight. She just has a lot of issues digesting her foods. So I think the better choice here would be to go with IV fluids at home and I can just run them if she is getting distended.

Typically, if Q is getting distended pretty bad, i would cut off her feeds because she just has so many issues with it. However, cutting off her feeds can cause her to go into a hypoglycemic crisis (as we have already learned). Even running pedialyte isn't cutting it for her sugars. She just doesn't absorb much in her tummy during the "bad" days. Not to mention that despite having plenty to drink, she is remaining dehydrated. For instance, yesterday, and the day before that, she only peed a maxiumum of four times for those two days combined. And the pee was obviously dehydration pee (pretty brown). So she needed IV fluids. Despite having had plenty to drink and being on her normal at-home regimen. Our Doc told us not to plan on going home without a PICC line. so, we feel that having a PICC line to get her through tummy issues will be very helpful. Not to mention that we can hang D10 if she is having hypoglycemic attacks.

Ok, back to endocrinology. Wouldn't you know it?... Quinn's blood sugars have been very stable since we've been here (except in ER). We didn't do a fasting test. But yesterday when endo came in and talked to me, she said that we know Q has lows. she's had them in the hospital before and obviously when i brought her to the ER. But she doesn't believe the highs we are seeing are true highs because she believed we would have seen at least some highs by now. She has always been lower than 120 in all the pricks they have done. So she felt that she's not having true highs. plus, her A1C levels came back REALLY GOOD!!! This was the most happy news I have heard in a long time. She told me that she can tell me for sure that Quinn does NOT have diabetes. WHEW!!! i was so happy to hear this. So, instead she gave us a new glucometer to have at home. We need to check her 6-8 times a day, plus she needs to be checked at school. She is likely going low a lot more often than we think she is. for quinn, her low is 70. anything under 70, we were told to treat her. Now this part is really funny and just made me laugh my ass off! Last night, when they were checking the 8 o'clock glucose levels, she was found to be hyperglycemic. Recall in my previous sentances that she hasn't had any highs and the doc didn't believe that she was having true highs. I find this quite comical because this is the same kind of bull crap that she pulls on me at home! So the nurse had to page the doc to let them know that Q had a high reading. It's nice that they have kept us long enough for them to actually see her true colors. sometimes, I feel like a total lunatic when i bring her in and tell them that this is what i'm seeing and she pulls no such nonsense in the hospital. So, i'm excited that we are hopefully going to be able to start treating these things instead of being completely blown off. I think also that having this mito diagnosis truly helps. It's odd how that helps.

So, not sure what the plan is today. i'm hoping the Dr. B (our GI doc) will get the ball rolling and let us put the PICC in today and let us go home. That would be so nice. Q is not "sick sick" per se. So she's getting ansy being in the hospital. So am I. i can't afford the gas and I can't afford to feed myself and I can't afford her being in here at all. So I just want to get the hell home. I have a lot of stuff to take care of. I need to clean my house and find a spot where we will be diong PICC dressing changes and sterilize that whole area.