From the beginning...my 9m old just had open heart surgery July 11th was hospitalized until July 26th (an extra week because she caught Rhinovirus (a cold) from a nurse there!. She has Trisomy21 (Down syndrome) but theres nothing down about her I say she has Up syndrome. Anyways! We just got home the other day (Friday) and I noticed Saturday morning that her urine was a little strong by Monday I immediately could smell it walking in her room so she had a appointment at 10:15am with her nurse practitioner so I took her and they put a bag over her vaginal area to check her urine and she said if it comes back positive then they have to do a catheter and send that off. So it came back within 10min positive with Pus in her urine. She then sent us to children's hospital were she was poked 4 times to find a vein were they had to then result to the vein in her head. Her results came back were the main doctor at her office called us saying her blood results came back positive for an infection and to bring her in the morning to be examined. I'm literally having a panic attack right now worried and scared to death! Her surgery was 4hrs away in Nashville Vanderbilt were I also learned today that the day of her surgery it was supposed to only take 6hrs and her surgery was 9am and ended very close to 3pm. We were told it would be 2hrs b4 we could see her once she was settled in PICU. We get a call 2hrs later saying there was an emergency in the PICU with a bed and there waiting to take her up there once everything is settled...everyone was gone for the day dozens of surgery families in and gone and then there was just us! We didn't get to see our daughter until 9pm with no other calls or updates and I had to break through the PICU to find her because I wasn't being informed of anything other then the surgeon at 3pm saying everything went great...her Nurse practitioner looked at me yesterday as she walked in the room "WOW! that was quite a long surgery process having to go back twice in her chest after being sewed up cause she was still leaking fluid from her heart into her lungs!"...😶...WHAT?!...her face immediately looked like oops! I asked her how long the surgery lasted and she said let me go check be right back...came back in saying that it never said..So your telling her heart surgery report dosen't say when it started and when it ended?! I called her heart doctor here the after hours line and the nurse told my husband just to call the office in the morning she cant page him if it's not a true emergency. I also tried to call Vanderbilt were I was told theres a heart doctor on call 24hrs and to call with and concerns day or night and the nurse said she can page the E.r doctor...I NEED A HEART SURGEON/DOCTOR not some rando in the E.r!! I'm just petrified right now! I buried 1 baby July 2017 I refuse to again! I don't know what to do😭😭😭😭😭😭😭😭 she dosen't have a fever seems ok.

*Update* JULY 31

Her blood test came back positive they gave her a shot in her leg of a strong antibiotics and start by mouth tomorrow. I feel this isn't being taken seriously.

*UPDATE* August 1

So I got another call this morning saying her nurse practitioner wanted to draw more blood because she sent out the blood again for the other day and it again came back positive. She wants to make sure this isn't staph on the skin that was contaminated within drawling the. Blood from her veins in the head. When the nurse practitioner drew her blood today she sanitized her head with cleaning solution and did everything perfectly versus children hospital lab had blood everywhere looking like a blood bath and my 14yr old daughter stayed with her while it was done at children's hospital because I just cry and cant handle seeing my baby being hurt and cry. Children's hospital didn't sanitize the head area either just drew blood. Her nurse practitioner also checked her white blood count today and it was at a 7000 instead of the 14000 the other day b4 the antibiotics shot so she seems to think things are going in the right direction which I'm ecstatic about! We will know the results hopefully tomorrow but she said she may need to be hospital for IV antibiotics cause these antibiotics in the phase aren't gonna work on staph. Prayers for my sweet girl please.