Friday January 5, 2018
I haven’t gotten even a second to write down my thoughts and the events of the last 24 hours. We ended up taking Bailey into the ER last night around 7 for extreme fussiness, diarrhea, low grade fever, and excessive sleepiness- on top of the already elevated 0.6 conjugated bili. We didn’t want it to get any worse throughout the night and have to end up taking her in anyways. Dr. Sonny agreed with us and paved the way for a smooth transition to be admitted to the 12th floor (med surg/transplant).
Last night in the ER her conjugated went down to 0.2 but they decided to admit her anyways due to the diarrhea and fussiness. Then for the 5:00 labs it was right back up to 0.6 so that bought us at least another 24 hours of IV antibiotics and waiting for stool samples to come back.
We are officially being treated for cholangitis 😞😫
Bailey refuses to sleep in the hospital bed … aka “cage”. It’s the most insane looking bed. She’s so trained to fall asleep on her own that it’s almost impossible for me to get her to fall asleep with me. Or if she does fall asleep, she doesn’t stay asleep for long. So we are both very sleep deprived. Thank goodness for my mom who came up early this morning and got B to nap for 2 hours and let me take a little nap also.
Saturday, January 6, 2018 Her conjugated bili was even higher today. It was 0.7. So they’re talking about putting in a central line (PICC/Broviac) and sending us Home for 2 weeks of antibiotics (Zosyn). Will know more of a time frame of how soon “Home” can happen after rounds in a little bit.
On a good note, she slept 2 stretches of 4 hours in her Hospital crib last night 🙌🏼 we all feel SO rested today! (Well… as rested as you can feel in the hospital)
Sunday January 7, 2018 Bailey’s conjugated bili is still 0.7 😫😞 but all of her other liver enzymes are trending down. We are mentally preparing for a central line to be placed tomorrow.
Sunday Night: As I type this, Bailey is sleeping on my lap. At midnight she will be NPO (no food or milk) so she can have her central line placement tomorrow morning. Hopefully it’ll be the first case early in the morning 🤞🏼 they said they try to get the little babies who scream because they haven’t eaten anything done first.
I’m not sure how long they’ll keep us in the hospital after the central line is placed… I’m sure they will have to monitor her because they will be intubating and sedating Bailey for the procedure. (Which is good! We don’t want that needle puncturing anything). Please pray for an uneventful procedure tomorrow morning and hopefully a peaceful night tonight.
Monday January 8, 2018 Conjugated Bili is 0.8. Highest so far. Good thing she is getting a PICC line today.
Tuesday January 9, 2018Yesterday after the central line placement, Dr. Tessier came in and updated us on the plan since the bili increased from 0.7 to 0.8. We changed antibiotics from just Zosyn to Cefepime and Flagyl. The ultrasound they did in the ER was just to rule out intussusception in her bowels. They didn’t actually get a good view of the liver. So we did another ultrasound of the liver yesterday. Since she’s 2 weeks from being 1 they decided to switch her to the big girl formula Pediasure Peptide. Which. Bailey. LOVES. it’s like a milkshake to her. She woke up from her procedure and ate 8 oz 😂 she’s never eaten 8 oz of anything in 1 sitting in her whole life. Finally, they mentioned possibly needing to start continuous feedings through an NG tube if the bili doesn’t come down- not because she has issues eating but to stimulate bile flow.
Today the bili is ……..0.1 🙌🏼🙌🏼🙌🏼🙌🏼
Dr. Tessier rounded with Dr. Cowel and Heather (dietician). They talked about the liver ultrasound. It definitely showed more scarring than her previous ultrasound (which was in January LAST year) so that is to be expected with Biliary Atresia. There is still a chance that her Kasai is starting to fail (which was the first time they said this to us!) but since we saw the drop from 0.8 to 0.1 today they are leaning more towards Cholangitis than a failing Kasai. So the plan is 3 weeks of Cefepime and Flagyl at home (starting from yesterday).
Of course they want to see a trending low bili before they feel comfortable sending us home. Dr. Tessier said she can be almost certain we will be home by Friday!
Bailey is acting more like herself today 🙂 happy, laughing, waving to everyone she sees. We are so proud of our sweet girl. She’s the bravest 11 month old we know.
Wednesday, January 10, 2018
The team just rounded. Bili is still 0.1, which is awesome! They want one more day of monitoring the bili, vomits, and diarrhea, and to put the home health orders in for our antibiotics and new formula (praying insurance will cover it!). Sounds like Home will happen TOMORROW!
There is a bruise that popped up on her central line site and a little knot forming on her neck on that side. So we will get an X-ray today just to make sure the catheter is in the right place. There is good blood draw and it flushes well so I’m not sure what’s going on.
Vomiting a little bit more, but it could just getting used to the new formula. She lost about 30 grams last night so hopefully she gains tomorrow before we go home!
Thursday, January 11, 2018
Well. The Conjugated Bili came back 0.5 this morning. So we are staying another night at least and depending on tomorrow’s number possibly longer. They think she’s just got slow bile flow from that area where the Kasai was done that connects the intestine to her liver. Whatever it is, they don’t feel comfortable sending us home with that number.
In other news, despite the increased amount of vomiting she gained 30 grams last night and nothing seems to be alarming on the ultrasound of the PICC and X-ray. The bruising has gotten better around her PICC site and the knot is only there when she’s angry and crying.
She’s also teething. Yay us. Popped her 7th tooth out since she’s been admitted andworking on her 8th 😭
Friday January 12, 2018
WE ARE GOING HOME TODAY!!!!
CONJUGATED BILIRUBIN IS 0!!!!!!
GOD IS GOOD!
January 31 at 10:30 is our follow up with Dr. Sonny. Bailey will be 1 year old, 1 year and 1 day post Kasai that day! (Remember to bring Dr. Tessier poop samples for research). Until then, labs every Tuesday with home health and possibly more frequently if need be. Will monitor for fever- especially with a central line.
I almost can’t even remember what our home routine is, when you’ve been in the hospital for 8 days, and when you come home with a PICC line and 2 antibiotics to give IV that go over a total of 1.5 hours your routine is gonna change up a lot. We are SO very thankful to be home.
Now for a good night’ssleep in my own bed 💚