Awaiting discharge

We have some good news!! They are aiming for Thursday to be out discharge date!! September 13. They already had the home care nurses come talk to me yesterday so I'm sure we are going to start training today. I'm going to learn how to use the machine which is in a portable back pack so we can go to places if necessary. I'm also going to have to learn how to prime the TPN and lipids which I'm nervous about but I'll think of it as early nurse training. They also recommended for Grandma to come learn too!

Yesterday Faye's abdominal girth was 43 cm, today her girth was 41.5 cm! Things are getting better!

So now.. We wait and prepare for the big day.
Here are some updated pictures of baby girl yesterday though

Sunday funday!

Update; Her belly measured 44 cm! The surgeons said that things are looking even better, so now he's going to report back to Dr. Anselmo. He pretty much said its going to be up to me and him to decide what to do next. So, we will see how things go this week but I'm very happy with the progress!
Oh, and miss little Faye has been so independent lately. She doesn't like being carried anymore and cries of you do! She'd rather lay down and play herself. I don't know if it's because she's had a bath and is feeling good either, but she's been sleeping so good! It can be a growth spurt too, but she's been falling asleep on her own and sleeping for 3 hours straight. She's growing up too fast!

Another Saturday

So, another weekend goes by.. We're pretty much waiting to see how Faye's belly does. But, things are looking good though! It's been staying around 45.5-46cm at this point and is as soft as ever. It's even better too because her umbilical hernia looks much much better, almost back to normal.
Finally Faye was able to get another bath too! Its been almost two weeks? We had to wait because of her blister from the tegaderm they put on her, but that's healing up perfectly. Also, big sister came to play! They are so cute together, so perfect in my eyes. My perfect angels. It's all good news from here, so let's see what happens next!

Oh, and miss little Faye has found her hands, which means sucking and licking them like crazy! Can't believe she's growing up so fast.

A free arm!

Well, all this time we were misinformed. The nurse last week told us that the Octreotide was not compatible with the TPN and lipids. Guess what though?! Today our new nurse Stacy was questioning the entire situation. She went to ask Pharmacy and they confirmed that it was in fact, COMPATIBLE! Great. So my poor baby had to get a new IV just for the Octreotide for no reason. Good news though, her IV went bad today but she doesn't need to get a new one!

Update; the good and the bad

Another bad and good update from Dr. Anselmo today! He came in to visit and check up on how everything was going.. He even asked if I've gone home this entire him we've been here. He told me I needed to, for my sanity at least. Haha. So, first thing's first, he is very impressed by how much softer Faye's belly has gotten. At this point though, we are hoping it does stay soft and doesn't get bigger or harder. Especially because she has been NPO (nothing oral) for a week in a half now, only on TPN and lipids (nutrients) through IV. My impression at first was if she's not eating, there was no way Chyle can leak, but I was informed otherwise. The GI team the other day did tell me that it is still possible for her to leak Chyle still. The Octreotide and being NPO only helps slow down the flow of Chyle, your lymphatic system constantly produces chyle? (Not sure how that works)

Anyways, so Dr. Anselmo is optimistic that her Chylous Ascites will go away once the duct seals. He also told me that he believes that she mostly has Chylous Ascites;

"True chylous ascites is defined as the presence of ascitic fluid with high fat (triglyceride) content, usually higher than 110 mg/dL."

because 97% of the fluid they drained in her belly were all triglycerides;

"Triglycerides are a type of fat in the bloodstream and fat tissue."

He also said that even though the liver biopsy showed that she had Fibrosis;

"Repeated damage and inflammation of the liver can lead to scarring, known as fibrosis. Fibrous strands develop where the liver has tried to repair and protect injured tissue.If the cause of the damage is removed, fibrosis can be reversed. However if damage continues, further scarring will occur and the liver will start to lose function."

But he said when he performed on her, he said her liver didn't look that damaged at all. Which is a good thing because her liver function and everything looks very good to compared to before her Kasai. He said, "Looks like her Kasai and liver is pretty much secondary at this point." Which is good, one less thing to worry about as of now.

So the bad news is, if her belly does get big and hard again, he is considering doing a procedure to find out where the leak is in her lymphatic system. With that procedure though, the success rate is very low. But he didn't want to discuss something like that until we see how her belly progress does in the next week.

And the good news is, even if we do have to wait to the 6 week mark before feeding her again and making sure the duct is sealed, he may still send us home! He said that he is going to consider sending us home on the TPN (IV nutrients) with Octreotide in the liquids. He said he's done this before, so he had no problem with it at all. With that, we will just have weekly visits with him so he can monitor her belly progress and he'll let us know what to do from there.

But he did say that we will definitely have to wait another week to see how her belly is, especially because it hasn't even been 2 weeks yet. We pretty much are going to take things slow with this one. We don't want to do anymore damaged and have to back track our progress. So, let's see what the next week holds for us!

Here are pictures of Faye today. Do you think her stomachs better?

Holding her PICC

Second paracentisis today

Faye had her second paracentisis today at 10:00 am. It took 30 minutes to do the operation but she was in recovery for 30 minutes before they called me in. I spent an hour in the recovery room holding her, trying to calm her down. Finally by noon we were back into our room. They informed me that they drained out 500 cc of fluid! Last week they only took out 400cc and I didn't see a difference at all. But today, her abdominal girth went from 51cm to 47.5cm. Her belly button looks much better as well!

Before

After

After sideview

Before

After

Labor day weekend

The weekends are usually slow, but it'll be even longer since its labor day on Monday. So, these 3 days will consists of slowly increasing her Octreotide to get it to the maximum dosage so we can make sure her duct heals. Then once the week starts on Tuesday, she'll get her second paracentisis and things will start progressing from there. Hoping for the best at this point but I must say, she's been happier than ever lately! The surgeon says her Kasai scar is healing up very well too!
And big sister Leah makes everything better.