Today was hard. We got some bad news about Lily's infection in her former central line (removed from her neck a few days ago). The bacteria that grew in the cultures is resistant to most antibiotics. The name of the bacteria is Klebsiella pneumoniae, for those who are interested in that sort of thing :). She is currently on two antibiotics, Meropenem and Amikacin. I requested a consult with the Infectious Disease (ID) specialist who ordered the antibiotics, but he showed up when I wasn't in the room, listened to her chest, and then left. I'm sorry, but that is NOT a consult, lol! I want to talk to this guy and ask questions, so I requested a REAL consult again tomorrow.
I am blessed with some wonderful friends who have been emailing me information about this bacteria, and it doesn't seem very good. It's a pretty nasty one. We are on "contact isolation" because it is spread by direct contact (as opposed to airborne). Every time I leave the room I have to wash my hands reeeeeally well, and any visitors/nurses/doctors who come into the room have to wear paper gowns and gloves (no masks b/c it's not airborne, thank goodness). I expect we'll be in contact isolation for the rest of our stay here at UVA. The risk of this being spread to healthy adults and children is minimal. The extra precaution is to protect other patients in the hospital with weak immune systems. So in other words, you can still come for a visit and please do :).
I don't know how long Lily will need to be on these antibiotics...again, a question for the ID consult. My guess is we will be here another two weeks. Hopefully not all of that time will be in the PICU, but I really don't know what their protocol for contact isolation is here. My mommy sixth sense has me really worried about this infection, so please pray for no further complications.
It was found by taking a blood culture from the central line in her neck this past Sunday night. They removed the line on Monday, which hopefully removed most of the infection. Today she didn't have any fevers, which is a good sign. However...
This brings me to the second hard part of today: Lily has just not been herself. She is lethargic. She just lays in the crib, occasionally picking up her feet/hands to look at them, but not wiggling or moving like she was yesterday. She also refuses eat. THAT alone has me really concerned, because this girl is an EATER. She almost never refuses the bottle. Usually when she sees it she smiles and does a happy dance. Today, nothing. We put it to her lips and she just turns her head away. Also, her "output" has been waaay down today, if you get my drift. That is not like her at all, either. We are keeping Huggies in business, lol! Any one of those things alone wouldn't worry me that much, but all three together, especially her not eating, has really got me worried. However, she doesn't seem to be in pain, so that is good. Another thing she has not done is sleep. At. All. She's still awake as I type this.
Mary (Rob's mom) and I are taking turns on the "night shift" and tonight is my first full night in the hospital with Lily. I've got a cot right next to her crib that is actually pretty nice. The only trouble is the beeping. Oh, the beeping. I've mastered the art of waking up after the first beep and quieting the alarm before the second beep, but that's not helping either of us sleep. I did sleep for about two hours already tonight, then the beepage woke me up so I thought I'd take this chance to blog.
And I'm eating chocolate. Lots of chocolate. I get the munchies late at night if I'm awake.
There were some good things today, too: Lily was visited by two Physical Therapists and the Preschool Teacher. They are going to come to her bedside every day. We are also going to get some speech therapy (hopefully daily as well) and a nutrition consult while we are here. I'm super excited about this because it will give us a jump-start on Early Intervention. Might as well get as much done as possible while we are here!!
Ok. The beeping has slowed and you are now all up-to-date. Please keep on praying, and thank you for all your kind comments.
11 comments:
Jess, I , from the nursing side, know exactly what you're going through. Unfortunately, with infectious disease, most of his consult will occur by staring at a computer with all of Lily's values and statistics. I hope you're able to get satisfaction from your next encounter with them. We're praying for you! Hope you get home soon.
Praying for you all. Thanks for the update.
Praying for you, Rob, your sweet Lily and the rest of your family. I'm so glad Rob's mom can be with you!
I came across your blog while surfing the net. I will also be praying for you, Lily and the rest of your family. Our God is a God of Mercy, Hope, and Love so I know all things will work out for you and your family. God bless, Lloyd
praying for you and Lily!
Mandy
praying for sweet lily!! hugs!!
I rebuke this infection in Jesus name. I on my knees before the throne of grace seeking the Lords face that He heal your angel! Lord, please place your hands on this baby girl and heal her right up!
Jess, I am definitely praying for Lily! I hope this infection goes away soon and that Lily starts acting like herself again! She is so precious and I just know that soon you'll have your little girl back to normal! Love you! (P.S. It feels SO incredibly weird to be starting a new school semester without you!)
Praying here still, Jess.
Jess, I'm praying for your sweet family! I hope ALL of you guys will be able to come home soon!
Jess, I just got caught up on Lily's surgery and the infection. I am praying that they are getting her the antibiotics that she needs, and that she is eating and sleeping well soon. I am also praying for your strength as I know how hard it is to get any rest in the PICU.
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