Monday, June 29, 2009

The Sleep Study: Part 1

Part 2
All went well. Despite being grumpy that we were there, Shelby went right to sleep after watching a few short shows on Netflix. The technician had to come in several times in the night to adjust the nasal sensors, but Shelby rolled with it. I guess in a few weeks we'll know the results. One test down, 3 to go....

Part 1
She is not thrilled by any of this, but is doing really well. They have to hook up kids with more "things" than adults (or so I was told by the technician this evening). We'll see how the night goes. She drained my laptop battery so this will be short, but here are some pics I took with my phone. I'll update again tomorrow.

Monday, June 22, 2009

All the tests are on the books

Who has time for summer fun when you have to be at the doctor's this much?!?!

Monday - sleep study in Rockford to see if she has sleep apnea and needs her tonsils and adenoids removed
July 14th - Upper endoscopy in Chicago to see if she has varices from her portal hypertension
Aug. 17th - PFT's and Pulmonologist in Chicago to see if she has reduced lung function from her liver disease
Sept. 22nd - Bubble Echo and Cardiologist in Chicago to see if she has Hepatopulmonary Syndrome. (although this is going to be sooner, they just haven't called back with the new date yet)

These are not "routine" tests that she is having. Her Hepatologist (Liver doctor) in Chicago believes Shelby may have Hepatopulmonary Syndrome. She's thought that before too, but so far, so good. If she does have Hepatopulmonary Syndrome, back on the waiting list she goes with several exception points to get her transplanted ASAP....and we thought things would be calm for a bit after the "mass" scare. *Sigh* Either she'll have this, and things will happen very fast or she won't have it and we'll just wait for the next thing of concern to pop up. That's how it goes on this rollercoaster of liver disease.

Tuesday, June 16, 2009

Clinic Day

Today was Shelby's first liver clinic since her biopsy. First of all, let me say that she is doing quite well. Last week she went to Camp Winnebago (YMCA day-camp just north of Rockford) and had a fantastic time. I will post pictures when I can. I want to try to get all the info in from today's clinic before my laptop battery dies. My laptop charger does not work so I have to charge up my laptop at Mom's until the new one arrives in the mail. I have 56 minutes left and a whole's days worth of internet surfing (I mean work) to catch up on.

Back to today's clinic. We had some concern about the area of her abdomen where her liver is sticking out lately. Her abdomen has always been large, but this was a new area to be protruding so much. There was no real explanation for it, but some ideas. We found out today that Shelby has gained over 6 pounds since clinic in March! That's a bit much to be explained by a growth spurt. The idea right now is that she has some ascites. The doctor said 1-2 pounds of fluid could be ascites that they could not detect by examining her. It does not explain the rest of the weight gain so we are just to watch that. For the ascites, Shelby is to reduce her sodium intake (so there's less fluid retention). Argh! She seems to crave salty foods and while we try to keep them to a minimum, she does have more than she should (especially when its easy to find a bag of potato chips to make her happy when she can't have what everyone else is having because it has dairy in it). She was NOT happy to hear that news. (Moreena, I need your best tips on finding yummy low-sodium food please!) Also, Dr. Alonso felt that Shelby's clubbing on her fingers and toes was more evident today. That, along with even more spider veins on her face and such low platelets warrants an "scope" to be done.
Its been almost 2 years since her last one. Seems her portal hypertension is getting much worse. Dr. Alonso said Shelby is not a candidate for a shunt because her disease is progressing and she probably won't go even 5 years without needing a transplant. Finally, in addition to all that, all of Shelby's current symptoms are because of her portal hypertension. That leads to concern that she is checked by the cardiologist for hepatopulmonary syndrome. She was just seen a year ago by her, but Dr. Alonso wants Shelby now rather than in another year, like was previously planned. Another bubble echo and some pulmonary tests are in Shelby's near future. It will be a busy summer. Not what we had in mind. Shelby will also be having a sleep study probably within the next month to see if she has sleep apnea. If she does, then her tonsils and adenoids will need to come out.

Sorry if this is choppy, but I'm pooped and am going to try to go back and add links to all the medical mumbo-jumbo I threw out there.

Friday, June 05, 2009

7 years ago today...

I began writing this on Friday, but did not complete it then. I finally got around to working on it again today. :-) I hear many of you have wondered how we're doing. Please be reassured that no news is good news. I post so much during our rough times that its nice to take a break when all is calm.

Big Sister Riley holding less than a week old VERY jaundiced Shelby.

...Scott and I handed over our 10-week old Shelby to the amazing hands of Dr. Superina for exploratory surgery. That exploratory surgery turned into the Kasai procedure. We were so terrified sending her off to surgery and then even more scared when the phone call came from the OR saying that, indeed, she did have Biliary Atresia and they would be proceeding with the longer surgery. She stayed in the hospital for just under a week.

Shelby 7 years ago

What a long way you've come kiddo!

Shelby and Riley finished off the school year with wonderful report cards! We celebrated by taking them to Volcano Falls. Shelby LOVED the go-carts. Monday Shelby starts off with day-camp for a week and will do that 3 times this summer. Riley will have 6 weeks of various camps this summer with one being a Girl Scout sleep-away camp! I sure hope this Mommy survives the week ;~0 Riley is very excited.

Avery is funny, as usual. She enjoys her big sisters and has a bit of a temper, but is a "can do" kind-of little girl. Enjoy the pictures and videos!

Misc. Spring 2009