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!

A week of Ascites

A happy baby through it all

Today marks the exactly a week since Faye's Ascites. At 5:00 pm last Monday, she received her first dose of Lasix. Now a long week of waiting and hoping for the Lasix to work along with the Aldactone, still no changes. Honestly, her hernia has been distending even more these past few days. This morning though, the GI team examined it and said as long as it pushes back in, it's fine. Also the surgery team came in and ordered an ultrasound to figure out what's going on. At this point, we are assuming there is a blood clot in one of her veins which I'm praying isn't in her main portal vein. If it is in her main portal vein, from what I have researched, it means she will not be eligible for a living liver donor. Fingers crossed though. Though they did say if she does have a blood clot, they were prescribe blood thinners and hope that'll fix the problem. Also, they did give us an update that they will be doing the Paracentesis tomorrow. She was able to get her ultrasound around 10:00 am so now we are just waiting for the results.

August 25 to August 26; hernia veins protrude

Also, big sister Leah was able to hold Faye today! Such a great sister, I love my girls

The waiting game

We spoke to the GI team yesterday (August 25, 2012) and they did say that they were considering doing a Paracentesis; a procedure to take out fluid that has collected in the belly. Though, this morning, 8:20 am, the surgery team said that is something they wish not to do but that they will consider if her belly gets worse. Right now though, we are depending on the medications (Lasix and Aldactone) to draw the fluid out. So I guess all we have to do and can do is wait to see how Faye's body reacts. I know we want to do ANYTHING to get rid of her Ascites but another operation is what we want to avoid. Let's just wait and see, staying positive.

On a good note, after 2 weeks of being here and rocking Faye in our arms, the hospital gave us a swing to use! Yay