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.

Step by step process

Dr. Anselmo, the surgeon who did Faye's Kasai just came in to talk to me. He did confirm once again that chylous Ascites is very uncommon but now that we have our diagnosis, we can now treat it. Because we have to slowly increase the Octreotide dosage, it's going to take some time before she's able to feed again. His plan as of now is to slowly increase the Octreotide up until her second paracentisis scheduled for Tuesday September 4, then slowly decrease the Octreotide. Once we get to that point, we will slowly introduce her to a special formula with MCT oil, without fat, just in case her ruptured lymphatic duct is still open. We are pretty much taking precautions, not feeding her anything with fat to make sure she doesn't leak chyle again.
But another concern is the fact that Faye's belly has distended a bit the past two days. At this point, we are assuming she has a combination of both chylous Ascites and regular Ascites. So now she will be back on the diuretics (Lasix and Aldactone) just to be sure we get any and every fluid out of her belly. I did let him know that I'm concerned that her Albumin (the protein in your body that absorbs fluids) is still low in which he will recommend adding more protein in her TPN.

"Albumin performs many functions including maintaining the "osmotic pressure" that causes fluid to remain within the blood stream instead of leaking out into the tissues."

But with that, he just says her liver needs to recover in her to produce more albumin on its own, that's all.

Before & After Kasai

Dr. Anselmo informed me that this is going to be a long process, so it'll be awhile till we are out of the hospital. We pretty much have to see how her body reacts and go from there. On a good note though, I feel as if she's gaining back the weight she lost and the Kasai is working!
She is also learning how to suck on her hand.. Silly girl haha

Chylous Ascites

After her paracentisis on Tuesday (Aug 28, 2012), they were able to drain 400cc of fluid. They tested the fluid and diagnosed her Ascites. She didn't have the common Ascites they were assuming she had but instead, she had Chylous Ascites.

"Chylous ascites refers to a leakage of a natural bodily fluid called chyle into the abdominal cavity from a duct in the lymphatic system. It is a rare condition that can be caused by many different factors. Blunt trauma to the abdomen, cancer, liver cirrhosis, and surgical procedures can all lead to chylous ascites. True chylous ascites is defined as the presence of ascitic fluid with high fat (triglyceride) content, usually higher than 110 mg/dL."

PICC still in dressing

"Chyle is a thick, white substance comprised mainly of triglycerides and other fatty deposits absorbed by the small intestine. The substance travels through small lymphatic vessels to the main thoracic duct, where it can then drain and feed throughout the body. An obstruction in the thoracic duct, lymph node, or another element of the lymphatic system can cause a rupture that leaks chyle into the open spaces in the abdomen."

So pretty much the entire week last week of Lasix and Aldactone was useless. On top of that, the feedings didn't help at all with what she had. Because every time she fed, all the fat from the formula just leaked out into her abdominal cavity. Thats also another reason why she wasn't gaining any weight as well. Now she has been ordered to be NPO (nothing oral) and receiving TPN and lipids through her PICC line. These are nutrients to help her grow since she can't feed orally. They also prescribed Octreotide; used to reduce the outflow of lymph fluid in persons with chylous ascites. Octreotide is not compatible with the TPN and lipids which means she still needed a new IV on her right hand to receive that. Bummer.
Now we are giving her stomach a rest so that whatever ruptured duct in her lymphatic system can seal up. After that, we will slowly introduce a low fat formula to see if it healed successfully. That's pretty much all we can do now, says the surgery team and GI.

Until then.. Here is my much happier baby!

New right arm IV

PICC line

3 months today; Paracentisis and PICC line

Happy 3 months!

Mommy & baby

Monday they ordered for Faye's paracentisis for 10:30 am. That morning consisted of playing with such a happy and talkative baby! Happy 3 months to my baby girl! That early morning around 7:00 am, the surgeons denied my request for a PICC line;

"A peripherally inserted central catheter (PICC) is a long, flexible, thin tube inserted in a vein to provide intravenous access to treatments. A PICC may be inserted through a small incision in your arm (peripheral location) and from there, threaded through a vein all the way to a large vein near your heart. At the insertion point on your arm, a length of catheter line will extend outside of your skin, ending in injection ports that are closed by caps. PICC lines may remain in place on a long-term basis if they are well-maintained."

The surgeons were saying that Faye needed the smallest catheter which meant she would be able to receive medications but wouldn't be able to draw blood from that size line. The main reason I wanted the PICC line is because she was already receiving medications through IV and getting poked for labs everyday. Especially since Faye would already be sedated for her Paracentisis, it was only reasonable to do it at the same time so she wouldn't need to be sedated another time just for the PICC. Also, it only made sense because Dr. Stanley who was doing the Paracentisis, dies the PICC. (He also did her liver biopsy) Well, our nurse Donna (amazing lady!) was baffled by their reasons and spent her morning getting surgery to put in the order. Even all the nurses were shocked the surgery team would say that because they've put PICC lines in 2 day olds! Donna was successful and they ordered the PICC to be done.
Then they called to let us know they were taking us in early, we headed down to IR around 9:15 am. Until they realized that Faye's last feed was at 4:00 am, they weren't able to take her because they needed a 6 hour window of an empty stomach (risks of anesthesia). We waited and I was just keeping Faye asleep since she was very grumpy from being NPO. 10:00 am and they finally brought us into the IR, they let me hold Faye while they pushed her anesthesia, told me to give her a kiss and walked me out.

Hernia After

Hernia Before

11:00 am they finally called me info recovery room where Faye was waking up from anesthesia. The nurses let me know that they were able to drain 400cc of fluid. By noon, we were finally transported back to our room. We (the nurses and I) seemed to be boggled that her belly was still so large but her belly was a bit softer and hernia was less red. Also, you can see the dressings to her PICC line!