Tuesday, March 17, 2009

Chicago's news

Well...everything looked pretty good. I know, I know, hard to believe after the past 2 weeks she's had, but its true. They didn't even do labs on her! :o Her abdominal ultrasound revealed a new "mass" right below the current cyst. The current cyst is still the same size - which is smaller than it was originally. As for the new "mass," a CT may be ordered to get a closer look, but they say these "cysts" really do happen frequently, especially with ultrasound technology continually improving. These are usually things that they see on the actual liver at the time of transplant, but now can see them through ultrasound. We're not too worried about this new discovery. We'll just sit back and see what the surgeon decides if and/or what he wants to do with this new information. Her spleen has grown another 2 cm in 4 months. It now measures 17 cm! Remember, for you non-medical people reading this, doctors shouldn't be able to feel your spleen. Yup, Shelby's is huge which leads to her portal hypertension. Her complication with PH is her low white blood cell count as a result of splenomegaly & pancytopenia. Dr. Alonso said that bacteria/viruses that live on our bodies were more of a threat to Shelby than her being out in public. Interesting. It was decided upon today that Dr. Alonso will consult with Hematology and find out more about Shelby receiving GCSF injections. This may just be a plan we keep in our back pocket in case she gets hospitalized again with a bacterial infection or virus, or this may be a treatment we start now. Those would be administered at home by us }:-( YIKES!!! Once again, we'll just wait to hear from Chicago on that. If all goes well, we'll see her Hepatologist again in 4 months. In the meantime, we'll have a check-up with Dr. Deutsch (local GI), see her Orthopedic doctor in Chicago (next week to check on her spondylolisthesis), visit her Pediatrician for her 7-year-old (this Saturday is her birthday) check-up and her allergist to follow-up on all these stinkin' food allergies. Speaking of the food allergies, we did get to speak with the nutritionist today about them. We expressed our frustration in wanting to feed Shelby more than potato chips and our concern of a supplement (think Pediasure) to give her on the days where she just won't eat much. She did let us know that feeding her was different than feeding a "picky" eater. Shelby has medical reasons why she cannot have certain foods; of course, so many of them seem to be foods she loves, but it creates havoc on the whole eating situation. Sometimes she just seems afraid of food, especially new foods. The nutritionist also recommended a book by Ellyn Satter that would be helpful in dealing with Shelby's eating.

O.k., I think that sums it up for today. Time to cuddle with my hubby (or go goof off on Facebook!) It was a lllooonnngg day. Please pray for Shelby to stay healthy!

(P.S. I like to keep people informed about Shelby's health via this blog, but am not sure if the work I put into it is worth it. Do I have any readers out there? Please leave a comment if you are a regular reader so I can decide on whether to keep this up and running.)


Fred & Carol said...

I check the blog all the time. I need to know how my girls are doing.

Our prayers are always with you Shelby.

Uncle Freddie and Auntie Lu

Coralee said...

Me too. You explain Shelby's situation much better. I refer all Shelby's prayer group people here!


Anonymous said...

I'm a silent onlooker, I worry about all my liver babies and check on them all the time.
Mary O.

Jenn said...

Its nice to "see" you. How is Danny doing?

Anonymous said...

Donovin and I check the blog frequently to stay up to date on the goings-on with you guys!! We would miss it!!

Anonymous said...

I'm part of Grandma's "prayer connection," so when she refers us to this blog, we check it to see what's happening. Thanks for the effort and for sharing Shelby with us.

Anonymous said...

Jennifer, I'm sure it is easier to tell all of us how Shelby is doing once - here, rather than to each of us one at a time. When I know you are facing challenges, I don't want to disturb you, and I appreciate this way of finding out what is going on. Prayers for you and Shelby and the rest of the family. And hoping you all have a happy day Saturday celebrating Shelby! Britta

Mom of Natalie Bear said...

Sounds good?
No really, nothing new found, so that's good. Poor kiddo with the food stuff.

Natalie and Shelby still have so much in common...even with us being post-tx...the spleen thing. We've no longer got portal vein hypertension...we'ver got portal vein blockage :) Not that that helps you any, but you are not alone with massive spleen issues.

Let's get the girls together, soon.

Anonymous said...

I check in pretty regularly to see how you all are doing.

Deb B

Anonymous said...

Jenn I can check this out any time to see how you guys are all doing. When I am downstairs with the kids on Sunday I don't know always know what is going on this way I can check it out. Thanks for doing this.

Tracy P.

Anonymous said...

Danny is doing fine. If it makes you feel any better he has a big spleen, low platelets, low white cell count, and portal hypertension. He has had all of these all of his life, he'll be nine in May. The pediatrician was worried about the big spleen and him going to gym class. I contacted Children's at his request, and they said no limits on him for gym class. I guess it's just part of the 'game' with these BA kids. Stay well and keep Shelby well!
Mary O.