The catch being that the doctor really dropped the ball on us.... This was at our local hospital so all the kids there are managed by there pediatricians group. Well someone new was on this week, this was her first time managing kids at this hospital. When we were discharged this morning to say I was frustrated would have been an understatement!
We essentially got what we needed done while there but we were there but we were sent on our way with no plan. We figured (I figured) out that the Broviac must be up against a wall or something since it is so positional it is almost impossible to get blood off of but still works great, thank god! So this was basically just not even dealt with as planned. The cultures were drawn and came back negative. This was a very good thing. Here's where all the glitches start coming in, first off she had labs on Thursday and Friday since they were ordered by her pediatrician. She also had a CBC done only because I begged since her H&H had dropped over a point in 1 day and also her WBC's had gone down 3 points in a day when it wasn't super high to begin with. Anyways, she had refused at first but finally called back and agreed to do the CBC but refused to check her Chemistry when we were having some issues with that too. We had to do her Gentamycin level and get her sed rate anyway so it's not like we were doing it just for this. So overall her WBC's dropped over 6 points in 48hrs. to an all time low of 3000. Her H&H was down to almost where we transfuse her at and her sed rate was also elevated. This was brushed off as no biggy. She certainly didn't check anything again after Saturday night. Also, the fact that she never had another temp since starting the abx and don't forget, something all my mito mom friends will understand, "SHE LOOKS GREAT" combined with the labs must have meant she had a virus.... Agggghhhhh, ya that's me screaming and wanting to pull out my hair, LOL! She had these fevers for 7 days and she was 100.3 when we got there Friday. Not high but she had consistently been in the 100's and low 101's for 7days and her labs were getting funky so aren't we lucky that the"virus" miraculously went away as soon as we started the different abx!
Today we were sent on our way and told to just start her back on her IV Ancef (abx she was on at home) and basically have a nice day. But, we were supposed to be done with them today. That is one problem and another is if the Ancef wasn't working before why the heck would it work now.... HELLO. This has basically guaranteed our ticket back into the hospital by the end of the week, that is really frustrating! She refused to call her GI and let him know and she also wouldn't call ID and let them know the situation either. She was as useless as a resident. At least they have people constantly have people reminding them they don't know everything when they think they do! She is on my list now....
Anyway, I did call ID after we got home. After a few miscommunication and phone tag I had just missed her for the day so I never got an answer today. Riley has been sleeping a lot today. Her temp was up to 100.3 when she went to bed at 5:30 for the night.... Liam has croup again. I actually have to go pick-up his steroids now. I think we are all just tired for today. There were many other things today but I'll have to get those in another time. But, hopefully tomorrow will be a better day after a good nights sleep in our own bed.