So... What's been go'n on you ask? Well, quite a bit. The past week has been pretty busy. Bella's had some real good days and recently some really stressful ones. It's always been an extreme stress on her and us to figure out why she pukes, there's always been so many factors. After we got the main one out the of way (blockages from Hirschprungs) there's been med changes, virus issues, motility issues, gaining weight, not gaining weight, retching episodes, ng, gtube, continuous feeds, to bolus feeds, to a mix of bolus in the day continuous at night, oh and then she's NPO (not fed) for 8 hours one day for procedures and tests... have I used enough commas yet, does your head hurt as much as mine?
Ya, so... Tid bit stressful when you want your daughter to have one effing break before she starts effing chemo.
Arghh...
Bella is feeling better today. Sun/Mon/Tues were hard. She was puking every feed and really not herself. After all the changes we made with her feeds and meds we couldn't figure out why things were so worse. Well... found out today she has Rotovirus. We have been protective in every single way possible, and so have the nurses. The virus is not even going around on the unit. Bella does not need this before chemo and transplant. I'm praying right now the result was wrong. But it could explain her bout of more puking on Monday.
Bella recently had her kidneys tested. This being part of the routine workup before transplant. They are fine but not filtering as quickly as the doctors would like so they will adjust her meds accordingly. However, she does not need a virus of any kind, going into transplant. Her kidneys will have enough work to do, we don't want her system stressed out more. And guess WHY this is??!! Well, if Bella's kidneys didn't have to go through the bullshit of months on antibiotics in Sasktoon, the 3 weeks in PICU on a mass amout of antibiotics saving her life from septic shock because we didn't know she had flip'n SCID! Ugh... well then her kidneys would be a lot stronger and functioning better. So ya, another reason why a SCID screening program could of saved her all those months of pain. And aparently, could of saved her kidneys.
Anyway, so we hope and pray this Rotovirus is gone before transplant. But with no immune system, you can shed a virus for months, like she has with the Entero/Rhino virus she's still shedding that she got back in Sept. 2014. It was really deflating to hear the Roto virus results today. I just want my baby girl at her strongest before chemo. She doesn't need more puking and pain before going through chemo. Her body is going to have to work hard enough to let chemo do its job and then on top of that, not allow anything to cause a complication while waiting for her new donor cells to take over and get her a fully functioning immune system.
We have been so diligent and working so hard to make sure nothing like this happens before transplant. I wipe her entire room down with cavi wipes daily. We've been so strict on what goes in and out of her room. Her doctors, nurses and myself are conpletely stumped on how she could of got Roto in the last month.
But! Bella is Brave, she's have'n a good day today and she's our super hero!
I jazzed up her burn netting dressing that she wears to keep her central line (iv line) from dangling near her diaper. She wears the burn netting like a little tight tank top and I thought they needed a lil more jaz. :)
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