Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, September 5, 2011

So today!

Yesterday I picked up the girls for some mommy time, it is about this time after a few weeks that Ry starts to have a hard time. We had dinner together and went on a little bike ride, followed by popcorn and m&ms in my bed and a movie! Daddy and Gator hung out together last night and this morning.This morning Gator's IV failed and he had to have a new one. I made it up to the hospital around lunch time. I took Gator to the playroom but we only got to stay for a little while until they paged us over the intercom. Infection control wanted to chat with us. It seems Gators culturs have grown out for a third time. We know for sure that it is there now. IC is called in to make sure we are treating it the right way. They have some ideas of what it is but are not 100%. We know it is staph but not sure if it is endovascular or endocarditis. So to begin they have him on some big gun antibiotics: vancomycin, gentomycin, and rifampin. The plan now is to do a TEE or trans esophageal echocardiogram. We hope this will try and find sources of infection and also see if his new conduit if functioning correctly. We will learn how to take care of a PICC line for meds for six weeks and then he most likely will be on antibiotics orally for six months. We will have to ask how this will effect things in the future like school and church! Gator got tomride the tractor a ton today which was really nice for him. He loves to laugh but it hurts. Daddy even took him out on the terrace for some sunshine. If you have to be in a hospital it is nice to have distractions like tractors, playrooms, and sunshiny terraces.


likeschocolate said...

Hope they figure out what is going on and can find a way to treat it. Sending you my prayers.

Kaidence's Mommy said...

oh man! Endocarditis stinks. We did a picc with those same antibiotics for Kaidence at home. It's another job itself BUT you get to be home:) So when are you heading? Let me know if I can do anything. Thinking of you.

The Hood's said...

Oh Brynn... my heart is breaking right now! I am so sorry for this bump that you guys have hit. Gator is such a little stud!
We will continue to pray for you guys. Please let us know if we can do ANYTHING for you.

Chrissie said...

Oh Brynn, I had no idea, when I ran into you in the pr room, I checked your blog & there was nothing, so I figured things were okay!! I am so sorry, these little kiddos sometime make for bumpy rides!!! LOL I am glad things are looking up. Please know we are PRAYING for you & so know how you feel!!! I'm sorry about the PICC line, that things was horrible for Kylie. Where did they put Gators? High Hopes for you guys!! I am extreamly sorry for your little bumps!! Things will get better!! XOXOXO Chrissie