Additionally the dressing and site for her best IV access site on the right side of her neck was disgusting. Before they pulled it they needed IV access elsewhere. The resident told me that they were going to get a PICC line and then get a peripheral IV on top of that. I kind of laughed and asked who in the world was going to place a peripheral IV. She said, "Oh, we'll call our IV team". I told her that two different IV teams in the NICU couldn't get one when she was perfectly healthy before G-tube surgery. That made her blink a little. So the PICC team knew Ava and refused to place it on the floor- good call on their part. The other problem is that Ava could not be transported to the IR Lab while she was on continuous dialysis. Tomorrow she will have a small break from dialysis when they change out the circuit but the IR lab is double booked already. (If push comes to shove Ava would play the trump card and bump even double booked folks to get in). Buuuuuut the nasty central line in her neck needed to come out today and nurses really needed more access. So, the IR Lab came to Ava. They brought their sterile table and an ultrasound machine and did the procedure on top of an xray plate and had x-ray take series of pictures to help with placement. Well, after two and a half hours of planning and procedure they were only able to make it a peripheral IV. So, Miss Resident, with all due respect, this is what it takes to get a peripheral IV. The nurses are really having to juggle meds though because the peripheral line is one port whereas the one in her neck had 3 ports. So they will have to stop continuous infusions, especially her nutrition like lipids and TPN, for 30 minutes in order to give other meds.
Also Ava spiked a fever last night. No one knows why. They took cultures of everything from everywhere and nothing has grown anything....as usual. So vancomycin was restarted just in case. Her temperature was normal the rest of the day. They did not take a culture of the pus-y neck IV. I don't know why.
Ava did not make urine today. They were also not able to get any for one of the liver labs. I think they did get a smidgen for a urine culture early in the morning though. They pulled the foley catheter again.
The doctors are getting creative with labs now. Now, it seems, that every conceivable test related to the liver has been sent off. They are looking for metabolic diseases or liver disease like hepatitis. Basically anything and everything related to the liver. They have also decided to send off blood for the genetic testing for the atypical HUS, but that was still put off because they had to take so much blood for other labs and the genetic testing one also needs 10mLs...which is a lot for a little baby. Results will come back at different times. It's already been 24 hours and no results have come back yet. Some of the labs had to be sent off.
One bright side: Ava did very well in her spontaneous breathing trial today. She breathed normally for 1 whole hour today, so that was good exercise for her.
My dad and Vicky switched off "babysitting" Ivy today. Vicky went back home to organize some scout stuff and get some other things done. They'll switch off again Monday and then, Ava permitting, we're planning to meet up again in Logan for Thanksgiving. I really could care less about holidays this year, but I know my boys love to play with Vicky's sister's kids and pets and my Grandmother will appreciate a big family get together for Thanksgiving, especially since we've stolen her away from Texas for so long.
Ivy is a champ. I made her a bunch of baby food of carrots and spinach in the ronald mcdonald room while i was waiting for the IR Lab IV surgical team. I froze it flat in ziplock baggies so that we could just break off chunks to thaw out. Thank you to whoever donated the blendtec blender to the room.
Man, It's 2am again! What was I thinking!
Given the spirit of Thanksgiving splashed accross facebook I think this week and next I need to make better efforts to to Walk in the Spirit.
Amber, You are walking in the Spirit. It just looks different. You are exhibiting love, joy, peace, longsuffering, kindness, goodness, faithfulness, gentleness and self-control. Maybe not all at the same time or all to the same degree. But I want to encourage you. You are a testimony of God's love even through the hard times. Hugs.
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