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

First shower in the hospital

It's been two weeks since Faye has gotten a proper shower. Yes, that has been how long we've been in the hospital. The week has been very draining but I'm glad it's the weekend. Faye has Daddy around all day and lots of supporting visitors. Today our PCSA was kind enough to give Faye a real bath, with water, not those useless wash wipes. Of course baby girl wasn't fond of it (she's never liked baths much to begin with). But she was all fresh and clean and hopefully that made her feel better!

The day went by pretty slow until my family arrived. Today I was happy to have our nurse Kathy though, she saw that I was getting worried that I saw no improvement in Faye's Ascites. I kept asking when they would increase her Aldactone dosage. That is when she asked if I would like to see her labs and then began explaining all the improvements. I'd have to get into more details with her numbers another time, but I'm just glad I now understand why the surgery team weresn't too concerned. She's slowly doing better from what the labs are saying, despite her distended belly.

Albumin, Lasix and Aldactone

August 23, 2012 Faye's Ascites hasn't subsided and to be honest, it's so overwhelming. The worse part is when the surgeon said, "The baby that had surgery the same day as yours, is going home today because she doesn't have Ascites." I don't understand why she would say that to me but that definitely got to me.
They ordered a third X-ray because they were still concerned but luckily this time around, they were able to do it in our room at 8:00 am.
Also, this day is the day that the GI team decided to give her 17cc of Albumin;

"Albumin helps move many small molecules through the blood, including bilirubin, calcium, progesterone, and medications. It plays an important role in keeping the fluid from the blood from leaking out into the tissues."

at 1:40 pm hoping that will help Faye's body. They also increased her dose of Lasix from 2mg to 4mg at 4:45 pm. Also, it may have been how harsh the albumin was but unfortunately, Faye's scalp IV went bad and she had to get another one in her left arm.

August 24, 2012 6:50 am the surgeons made their rounds and once again told me there is no way Faye can go home with her stomach so tense. Faye received another 17cc of Albumin and this day they decided to increase Lasix to 3 times a day rather than the original 2 times a day.

Also big sister Leah decided to be very helpful. It melted my heart.

Complications; Ascites

"Ascites is excess fluid in the space between the tissues lining the abdomen and abdominal organs (the peritoneal cavity)."

August 21, 2012 at 5:00 am Faye had to get another x-ray because the surgery team wanted to make sure her intestines weren't dilated. 5:30 am, she received her second dose of Lasix. Then the results came in and surgery gave the good to go that Faye was able to eat again. 9:10 am Faye drank 20cc of pedialyte, 3 and 6 hours later she was able to drink 30cc of formula.
By night time, when the surgeons rounded, we were very concerned cause she was unable to poop all day too. In my opinion, it was the Ascites that prevented her from pooping which the surgeons said can be a possibility.
Midnight, the surgeons then decided to give her a suppository; glycerin to help. Once the nurse stuck that in her rectum, she pushed it right out along with a bowel.

August 22, 2012 she received glycerin twice and then after that, she was having bowels constantly. Which then, the doctors decided it was fine to give formula and from there her Ascites got much worse. She was slowly unable to take 2 ounces (she normally takes 4 ounces). Her belly started distending even more and started to look even more bruised. Though, even with her belly distending, her swelling in her legs went down.

First time events

August 18, 2012 That morning, due to the concerns of her heart rate and the morphine, the doctor decided to switch her pain medication to Tylenol instead. They say babies seem to handle pain relatively well which seemed to be true given the fact that Faye slept it off. At 2:00 pm I was able to hold my baby after her surgery for the first time. I must admit that it was kind of scary because I was scared to hurt her, but my baby needed to know I was there.

7:08 pm had her first fart and 8:30 pm she had her first poop! Even though it wasn't green, it was more of dark yellow brown. This was a great a sign of her Kasai working. The surgeons kept asking me, and to be honest I was kind of let down nothing happened that day. But that night was full of happiness! Another positive step was removng the tube out of her nose because they had already stopped suction.

August 19, 2012 8:00 am Faye has her first green poop! Though it was more of a very black dark green, it was still green! All good signs. From there the surgeons gave Faye the good to go with drinking pedialyte. 10:30 am she drank 6 ounces of pedialyte but threw up some, which I believe 6 ounces was too much when she only drinks 4 ounces. But the surgeons told me ad-lib therefore I thought she was just hungry. 1:21 pm, Faye was off of IV fluids which was such a happy feeling, it all meant things were going the right direction. But then when the surgeons made their rounds that night, they were concerned about Faye's distending belly and swelling so they ordered an X-ray.

August 20, 2012 3:00 am our nurse Malorie took us down to radiology for an X-ray. Unfortunately her right hand IV started to leak and an IV nurse was called in. 5:27 am They gave us two options; to poke around her arms and legs and hope we find a vein or just do a one poke scalp IV.
Also, this is the day Faye received her first dose of Lasix;

"Lasix (furosemide) is a loop diuretic (water pill) that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine. Lasix treats fluid retention (edema) in people with congestive heart failure, liver disease, or a kidney disorder such as nephrotic syndrome."

at 5:00 pm. So with this medication, we're hoping this medication would help her "pee" out the excess fluid in her belly.

Kasai recovery

We left our baby girl in the hands of the surgery team at 10:00 pm August 16, 2012. 3 hours later, we were called back to the waiting room because they were all done operating on Faye. 1:15 am Dr. Anselmo let us know that everything went fine, but of course, seeing your baby that way is very tough. She spent that night resting and only whined a bit which then she received morphine.

August 17, 2012 consists of Faye recovering, still in and out of it and receiving morphine.There were a few concerns at first, she had gotten a low grade fever but that quickly went away after taking off her blankets. Also, everytime she received morphine, her heart rate would decline so we stopped morphine that night.

Kasai surgery day

Surgery day was pretty rough on us because there was no set time for when they would perform on her. The nurses just told us, just to be safe, we would stop her feeds at 2:00 am. A rough night passed and 8:00 am in the morning had came, I was informed that we wouldn't be going for surgery that early and it could either be at 11:00 am or 2:00 pm. All we could that now was wait for when they would take us in. Anybody hospital parent would know that keeping your baby NPO is not a fun thing. We went the entire nigh and no the entire morning to afternoon still NPO. 11:00 am passed and at 12:16 pm the nurses let us know that we would be the 2:00 pm operation. Still though, we were still not able to give Faye anything. The entire day consisted of trying to keep her asleep so she wouldn't be awake and angry hungry. Finally 2:00 pm came along and all we heard was that surgery for the previous patient was going longed than expected. 4:41 pm came around, the surgeon walked in and said he'd have to delay Faye's surgery. Relieved that we had an answer but upset out baby went NPO all night and day for no reason, Dr. Anselmo let us know that he would be back and her surgery would be set for 9:30 pm.
We continued to wait the longest 3-4 hours ever, 8:45 pm they took us down to prep in the O.R. They explained everything to us, prepared Faye and by 10:00 pm we walked her to the doors where they took our baby girl.

Faye and Mommy

Faye's belly before surgery

Faye and Daddy

Faye with her Aunties and sister