Uneventful Week

No changes this week at home. Olivia has taken right back to her old ways at home --- manipulating  Mom & Dad to hold her as much as possible. Somehow she seems to have my number and always ends up sleeping half the night on my chest....  at least i get sleep that way.

No news yet on the blood work that was run Thursday, hopefully by early next week we'll have those results. When Sasquatch came by last week, Olivia weighed in at 7lbs 2oz !!  The new formula, even though it tastes rancid, seems to be agreeing well with her. 

Here are some pictures from this last week.

Chillin' in the bouncy chair

Shaking  her new wrist rattle:

Striking a pose, showing off her band-aid:

Grumpy Girl gets swaddled and goes for a ride:

All that's needed for a good day; TIVO Remote & Cell Phone -- Bring on the day!!:

Happy Girl

Olivia hamming it up for the camera with a little encouragement from dad...

Home Sweet Home

We made it back home yesterday evening, after one final scare.

Olivia had increased her feedings nicely from 1oz Pedialyte to 50/50 pedialyte/formula to 2 oz formula over about 24 hours. She was acting great, eating well, but hadn't had a 'good' BM yet. When she finally did, Sara noticed some larger reddish/orange flecks & mucous in her stool. This was brought to the nurses attention, and was tested for blood. For the next 2 hours everyone was concerned that there was some GI bleeding that would require a longer hospital stay and more work-up. Finally the Occult Blood test came back as negative, and Olivia was free to go home. What had been seen in in the BM was color left by her multi-vitamin mix -- a fluorescent orange mix --- yum.

Olivia is still adjusting to home, it will probably take a couple days again to get into a nice wake/eat/sleep routine again. 

Everytime she is dismissed from the hospital, her specialist visit list grows. She now has visits setup with her Cardiologist, Nephrologist, and the GI/Liver Specialists. 

We'll keep posting  as these visits come along and things change/improve.

Let's Try This Again

Olivia has recovered very well since her Wed biopsy & procedures. She is back to eating full strength formula & on all her oral meds. The pediatric service wants to send her home alter this afternoon. She had some labs drawn earlier this AM, as long as they come back within her expected levels, she will be good to go :)

We got another chance to talk to Dr. Lopez -- The Liver Specialist -- yesterday afternoon. We all came away feeling quite positive about Olivia's situation. He stressed nutrition & vitamin suplementation as the keys to keeping her growing and keeping her liver as healthy as it can be. He also repeatedly stated that keeping her heart healthy and getting it repaired would be The Single Biggest Factor affecting her liver and providing a longterm positive outcome for her disease process.

Back to work, more later whe or after she gets home.

"I can call you Betty, and Betty when you call me, you can call me Al(agille)"

Olivia has had a really good day. They stopped her Morphine infusion early this morning because she was having too much fun being gorked out of her mind and forgetting to breathe for herself. Once they stopped the Morphine drip, within 6 hours she was breathing on her own and was awake enough to be taken off the ventilator. So our little peanut sounds like a smoker again -- her cough is more like a 1/2 pack smoker this time :)

Dr. Lopez from the GI team did stop by and talk

 to Sara and her mother while I was working today. He was "comfortable" with a diagnosis of Alagille Syndrome with our little Diva. The biopsies that were taken during surgery will most likely confirm the Doctor's suspicions. This Syndrome/Disease is mainly a management disease. We will need to find ways to support her Liver with food, supplements, & medications, there is no cure besides a Liver transplant. Dr. Lopez also stressed that the healthier we can keep her heart, the healthier her liver will be. Hopefully I will get a chance to talk to him sometime before discharge to get some more specific quesrtions answered. 

I'll Post some more on Alagille this evening.

MMMmmmmm Morphine......

I fear our little peanut will be a druggie before she's a year old. I might have to put double locks on the clinic controlled drugs to keep her safe :)  She seems to like Morphine & Versed quite a bit.

She's still on the ventilator and sleeping/sedated after the procedure. Due to her Liver issues, she doesn't process the anesthetic drugs quite as fast as 'normal' , so she's still out of it. She should start slowly waking over the next few hours and be ready to be extubated & off the ventilator 

sometime tomorrow. 

She's also been reunited with her guardian angel Dr. Shah -- he brought her back after her cardiac arrest -- since she's actually recovering in the Cardiac ICU rather than the Ped ICU.

She's got a couple new scars to show off too, one through her belly button, another on the right side of her abdomen, and a small one on her right groin where the hernia was.

Now off to catch some sleep. 

Out of Surgery

1) Biopsy Done

2) Bile Duct Study Complete - Not consistent with Biliary Atresia - but not 'Classic' Alagille

3) Hernia Fixed

4) No Kasai Performed

5) Still No Official Diagnosis - Still most likely Alagille pending biopsy results. 

Now headed back to Pediatric ICU (PICU).  

I'll post more later

And We Wait

Just heard from the nurse, that Olivia is doing well under anesthesia, still doing the Laproscopic procedure, haven't made a determination about the need for a Kasai procedure or not.

Just Starting Now

Olivia just went to the Operating Room now.  Estimated time of the procedure is about 2 hours as long as she doesn't need a Kasai Procedure. If she does need the Kasai time-wise, all bets are off.

Send good Thoughts/Prayers/Mojo her way.

Surgery/Biopsy Postponed Again

Surgery has been put off until 12 this afternoon.  Just a scheduling issue, not a problem w/ Diva. Will update as more info becomes available. 

On Second Thought

Well today was pretty much a wash. After not feeding Olivia for 7 hours and waiting for our Liver biopsy time,  we find out that the biopsy was canceled. Ugh... kind of felt like a wasted day. 

There are some Liver associated complications with Cystic Fibrosis, so today she was tested --- again --- for CF and for the first bit of good news in a while she did test NEGATIVE.

The biopsy has been rescheduled for tomorrow morning bright and early (7:30am). They will actually put her under general anesthesia and do a true surgical biopsy (open her abdomen). At the same time they will perform a contrast study on her bile ducts, giving the doctors a true view of the extent and connection of her biliary system. This dye study should give a difinitve answer to whether Olivia has Biliary Atresia or not. 

If the test confirms Biliary Atresia they will then contiue on in surgery and perform a 'palliative' Kasai procedure to help move Bile from her liver to her small intestine.

If the dye study does not show Biliary Atresia, they will close her up and most likely the diagnosis will be Alagille Syndrome.

Tomorrow will be a big day.  Keep us in your thoughts tomorrow.

Another Day of Testing

Olivia gets to finish up her testing that started yesterday. She'll get one more series of pictures for her HIDA Scan. After her second series of pictures, very little to no dye had left her liver to enter the small intestine. Her final scan this morning will show if anything has moved out in the last 24 hours, hopefully there is some movement, which will show that there is movement of bile from the liver to the intestine, but just not as much as there should be. 

After her final HIDA Scan she'll get to have a liver biopsy. Yipeee !!!  

She'll also be visited by an opthomolagist sometime today to evaluate her for characteristics of Alagille syndrome. The majority of children with this syndrome have changes within the eye that should be evident at her age. Aliagille syndrome (while not a desired diagnosis) manages to explain a number of her issues -- Heart, Kidney, Liver, Metabolic Acidosis.

These three tests - the HIDA Scan, the Liver Biopsy, & the Opthalmic exam -- should help seperate out the two most likely candidates that are causing her liver problems.

It will be nice to just get a diagnosis so we can move on and figure out how to work with her issues.

Wait, Wait Some More, & Wait Even More

Olivia had her first HIDA scan this morning and she's heading back shortly for some follow up pictures. Basically the GI team is still trying to rule out Biliary Atresia (shrinkage/disaperance of bile ducts - either in or outside the liver) with this scan. We had hoped that her original ultrasounds had eliminated this as a possiblity, but there is a version fo BA that can be progressive, developing over the first couple months of life rather than being present at birth.

She will also receive another ultrasound of her liver later this afternoon checking her gall bladder once again -- to make sure it's still present.

Poor girl has been fasted most of the day... needless to say she's NOT HAPPY and she's letting most of the hospital know, by screaming at the top of her lungs.

More later

Hangin' at the Mott

So we made it to Mott Children's Hospital (I assume they're the Applesauce Mott's -- or related) this afternoon w/o any problems. Olivia travels well, the bumpier the road, the happier she is. Those of you that have been fortunate enough to travel on Michigan's wonderful post-winter roads will know that Olivia loved the ride :) Tire swallowing potholes were avoided, so both Olivia & her parents were happy.

Once we arrived at her room, the poking party picked up right where it left off two weeks ago. In the span of the afternoon/evening she's been visited by no less than 5 doctors, listening, poking, measuring, and drawing labs. 

Everyone seems to be quite happy with her condition-- aside from her jaundice. Even the ICU doctor who resuscitated her dropped by because he saw she'd been admitted. He was happy to see it was not heart related :)

So far her labs have come back pretty much the same as last week's, this in itself makes us feel somewhat better because it indicates her condition hasn't progressed/deteriorated much if at all in the last 5 days. 

The plan is for her procedure (HIDA Scan) to start around 10am tomorrow morning. Hopefully by afternoon, we'll  have some answers, or at least the next step in the diagnostic plan. In the mean time, here's the little peanut sporting her Easter IV line.

On the Road Again

We're getting things together tonight to head back to Mott Children's Hospital for Olivia's Liver work-up.  It's hard to say what they will find wrong with our little peanut, but as much as we'd like to put our head in the sand, and continue as if nothing is wrong, we need to stand and face anything that is to come. 

Olivia has met every challenge placed before her with a grace and vigor that Sara and I can only marvel at. The strength contained within our young daugther makes us so proud. It will help bring her through any and all these trials. 

Here's another cute shot of our Diva posing with her seahorse toy (a gift from her Auntie Melinda)

Deja Vu All Over Again or Olivia! My little Yellow Friend....

Olivia's Jaundice continues to get worse. The blood that was drawn earlier this week came back yesterday (Wed). It showed that not only have her Bilirubin values continued to increase, but a couple of her Liver enzymes are also on the rise. I forwarded these results to Olivia's cardiologist to keep her informed. Dr. Dommer contacted us later that afternoon with her concerns about the abnormal liver values. She had already contacted the UofM GI team about Olivia's newest Blood Values. Needless to say the GI team was not happy with the increases seen.

For all her hard work at putting on weight nicely this week, Olivia has been rewarded with another visit to Ann Arbor. She will be admitted to the

 Hospital Sunday night in preparation  for a fun day of poking and prodding at her Liver 

on Monday. Hopefully this visit won't last much longer than a day or two until they figure out what her liver is doing ... or more correctly not doing. 

Here we go again..... It's becoming quite the routine that just when we feel good about her progress, something comes along and pulls the rug out from under us again. At some point his ride better stop or we're going to go crazy. The things keeping us going are our Little Yellow Diva and the support of all our family, friends, and clients. 

Please keep Olivia in your thoughts and prayers over the next days/weeks. It sure seems like we're in for many more twists and turns.

(My thanks & apologies to Blake Edwards & Peter Sellers for the title's inspiration: Cato!! My Little Yellow Friend.)

Movin' Up a Weight Class

The visiting nurse (aka Sasquatch ... she has really big hands....) was by today and gave Olivia a once over. She now weighs in at a whopping 6lbs 4oz !!! Yeah!!!

More blood was drawn to check her Bilirubin & Liver values. Last weeks values had crept up again (Total Bili was up, Direct was down, Indirect was up).. go figure. Her liver values also had crept upwards from the time of discharge. Hopefully today will bring some better news on that front. Visibly Olivia looks a lot less Jaundiced than she did last week, so hope her bloodwork will follow suit.

She is eating really well, somewhere between 2.5 -4 oz per feeding -- about every 3 hours. 

She was dissapointed in the basketball game last night, she was hoping for a closer affair than the blowout provided. She also can't wait to grow into her Jayhawk Bib to show her true colors.

Another Day Another Doctor's Office

We took Olivia back to the Cardiogist for her 1-week post Hospital discharge visit. Everything went very well. Olivia's Oxygenation was 86% -- even while screaming -- that was a new record for her. Her Heart Ultrasound also showed no new problems. Dr. Dommer was happy with Olivia's heart function (ejection fraction -- the degree of herat contractility) , which had decreased slightly after surgery, but now is back to presurgery levels. There are no signs of fluid build up around the heart which we have been told is one of the more common complications 3 to 6 weeks post surgery. Olivia will need to see Dr. Dommer again in 2 weeks for another echo -- sounds like this will be at least a monthly occurence for the forseeable future.

We have not yet heard about her latest Bilirubin values, hopefully tomorrow when the Visiting Nurse comes we'll get a copy of the bloodwork. Dr. Dommer was also right on top of this, contacting UofM while we were there to get results w/o any success. 

We have been extremely impressed and comfortable with our cardiologist (Dr. Fountain - Dommer), she has been very pro-active and involved. Sara and I truely believe that she was and will continue to be a vital part to Olivia's continued success. In that vein we will also be changing pediatrician's offices to someone that is more familiar with the special health needs of our One-Kidney, Jaundiced, Heart Defective Diva :)  Dr. Dommer gave us some names of pediatricians in Kalamazoo that are more used to dealing with special needs kids.

Some New & Old Pics

Happy in Dads arms

Sleeping on Mom's Lap

Not Happy about a Doctor Visit

Poke me one more time and I'll pop ya

Thumbs: The Pacifier You Never Drop