Hello still! The April/May blog post got really slow to load- I think maybe too many pictures in the beginning before we knew we’d be here for almost 2 months! So with it being a new month, I figured I’d start a new post. Same updates everyday, just on a fresh page so you lovely friends don’t have to keep scrolling and scrolling and waiting for the page to load 🙂
Friday, June 1st
Conjugated bili is 3.9 (down from Wednesday- 4.1). All the liver enzymes are lower as well! Only thing higher is the total bili at 8.9.
Today was Dr. Miloh’s last day on service. Over the weekend we will have Dr. Fishman, and then starting on Monday Dr. Himes will be on service for the next 2 weeks. It’s crazy how many attendings we’ve gone through this stay! We’ve practically met the entire Texas Childrens Hepatologist group by now!
So Bailey will continue her IV antibiotics until drainage stops coming out of the old bile drain site. The output has been significantly less over the last 4 days! I’ve only had to change the dressing every 2 days, and the output is still green. Oh and several days ago they told me that what they cultured from it, just collecting it from the skin, didn’t grown anything- not even pseudomonas! So these antibiotics are finally working! Once the drainage stops completely, they will switch her to a PO antibiotic and as long as she afebrile, they could possibly send us home to wait for transplant. We will just see how she does next week.
June 6th is the official 14 day period where they should have voted on the petition points. So waiting patiently until then.
Weight: 8.92 kg (down just a little, but that’s good because it’s belly fluid)
Girth: 51 cm (was 51.5 cm this am, which was up 1 cm from last night. And came down to 51 cm after the spironalactone increase)
Saturday, June 2nd
No labs today!
Bailey had a really good day just being active and playing 🙂 She’s acting herself! And we love it!
Dr. Fishman is on this weekend. He is the one who was going to do Bailey’s endoscopy that ended up getting cancelled during this hospital stay. He remembered us even though we never actually met him. He said he had a 3 year old and a 4 year old. Seemed really nice. No changes to be made today (duh. it’s the weekend.)
I walked over to Methodist to visit Kev (He’s in for appendicitis!), and of course I get a call from “unknown caller”. It was Sarah, one of the transplant coordinators. My heart STOPPED. She said that Dr. Goss (transplant surgeon) has requested we list her under “ABOI Incompatibility” meaning she can accept any livers from blood types A, AB, or O instead of just A. Apparently there have been several livers available this weekend, but none of them were Bailey’s A Blood type. Sarah explained that research shows no more or less of a rejection in patients under the age of 2 that receive liver transplants from outside their blood type (as long as she doesn’t get just plain B). They ran an isohemoglobin titer on 5/23 and it was 4 (?) but she said that’s really low and really good and puts her in a good place to be able to accept other livers.
Her PELD is 32! The exception points got approved!
Praying for Bailey’s perfect liver. It could be anytime now! She said to keep my phone connected to my hip and on LOUD.
Weight: 8.95 kg
Girth: 51 cm
Sunday, June 3rd
No changes! Nothing really new to report (It’s Sunday!)
Actually, Bailey decided to do a dressing change herself, and ripped off her bile drain site dressing and there was zero drainage on it (after 24 hours)! So we left it to air, and I let the team know, but of course we’ll talk about it with the primary team tomorrow.
Weight: 9.010 kg
Girth: 51.5 cm
Monday, June 4th
Conjugated bili is 3.5! (Decrease!!!) and Total Bili is 8.2 (Decrease from 8.9)! AST/ALT were a little elevated from Friday’s labs.
Dr. Himes is on. He’s really good with Bailey! He let his fellow do all the talking during rounds while he just played with Bailey. He bent down and got on her level, made sure to make eye contact with her, and he really tried to establish a good first impression with her. I LOVED that!
Since the drainage site isn’t putting out anymore output- it’s scabbed over now- we’re gonna get an ultrasound today just to see if it’s starting to accumulate again or if it’s draining into the intestine like it’s supposed to.
Ultrasound reading: NO FLUID pocket at ALL! This is amazing. The last ultrasound just a few weeks ago showed the pocket being about 1 cm in size, but today’s didn’t show anything. This is just one more step closer to getting off IV antibiotics, getting the PICC line out, and going home to wait for a liver.
Dr. Himes mentioned we could go home by the end of the week and wait for transplant from home!! That’s ONLY IF the transplant ID team is ready to DC the IV antibiotics, possibly switch over to a PO one, and IF Bailey stays fever free after being off the IV antibiotics.
They went ahead and placed the home health order for the feeding pump and equipment.
We also changed her aquADEK’s liquid vitamin over to a pill that we crush up and mix with water (she tolerated that SO much better!) and we did the same for the spironalactone. The spironalactone pill version increased her dose just a little bit, but they think it’ll be fine.
Weight: 9.080 kg (increase 70 grams! Which is awesome. They want steady increase of about 20 grams/day so this is good)
Girth: 52.5 cm (increase by 1 cm, but I watched the PCA do it and it looked closer to 52 cm to me)
Tuesday, June 5th
No labs today.
Today the ID transplant team didn’t have time to stop by, but passed along their plan to the Liver team. They want to stay on the IV antibiotics until tomorrow, where they’ll switch her over to a P.O. antibiotic (maybe two depending on what they want). After that, they’ll watch her for 24 hours inpatient still to make sure she doesn’t spike a fever. And if she stays fever free Bailey is free to go HOME and wait for a liver from there!!!! So possibly going Home on Thursday!
We took Bailey to the TCH park while we waited for our Uber Eats to deliver Mexican food! We met Nana and Grandpa there, and had to FaceTime Uncle Kev who is still just down the street at Methodist.
Tomorrow is Wednesday. And Kevin got his liver transplant on a Wednesday. Who knows if Bailey wants to follow completely and totally in his footsteps… but tomorrow would be a good day… just sayin!
Weight: 8.975 kg (down a little)
Girth: 52.5 cm
Wednesday, June 6th
Conjugated Bili is higher at 3.9, but AST/ALT are lower!
The plan is to give her last IV antibiotic today at 11 am, and then start P.O. ciprofloxacin and flagyl tonight at 9 pm. And of course monitor for any fevers. Then home Friday if all goes well! 🙌🏼
Dr. Bocchini stopped by to explain that the plan is a total of 12 weeks of antibiotics, starting whenever we started her first IV dose… I’ll have to look back to see when that was. But chances are she’ll just be on these until transplant and then she won’t need them anymore! We don’t need to be on prophylactic Bactrim because cipro and flagyl will definitely cover that. We’ll still use bactrim after transplant. She explained Bailey’s resistance to the ceftazidime and Cefepime and that’s why we switched over to Cipro. Cipro is a really good drug for bile duct infection because it’s able to get up into the biliary tree.
Weight: 9.015 kg (increase! She’s looking SO healthy – almost chunky to me🤗)
Girth: 51.5 cm (down)
Thursday, June 7th
We are officially on all PO antibiotics! No fevers overnight, hopefully it stays that way all day today and we can go home tomorrow!!!
The resident is doing an awesome job getting all of Bailey’s prescriptions sent over to all the right pharmacies. Texas Children’s pharmacy still doesn’t accept our insurance (even though our insurance is THROUGH Texas Children’s). I can’t tell you how much easier that would make my life since we have to find outside compound pharmacies for half of her meds.
Weight: 9.008 kg
Friday, June 8th
WE. ARE. GOING. HOME! No fevers overnight, got all of her meds filled.
It’s time to go home! We were discharged by 11 am. SO THANKFUL!