I had to use my I-mean-business tone with Chicago on Monday and let them know how mad we were getting at not hearing from them. So, amazingly enough, Dr. Alonso herself called me back that afternoon. But..I couldn't answer the call because I had just dropped my cell phone (our home/cell phone) in a small bowl of ranch dressing. Why, you ask, was my cell phone around ranch dressing...well, don't ask...just remember I'm pregnant and allowed to do crazy things like that. Off to Verizon Wireless I went with my blood pressure skyrocketing, I'm sure. The tech guy was able to make my phone work again, but told me it was a goner and I'd better contact my insurance to get a new one sent out. Yea, whatever. Its working just fine. Anyway, before I left the store I listened to my voicemail from Dr. Alonso. I did also call back and ask to talk to her (which I did). Seems she was the relay person seeing as Dr. Superina would have called if he wasn't out-of-town for a few days. This cyst is located in Shelby's liver. It is most likely the result of dilated bile ducts and filled with bile. Since it is not causing her any pain or infections they're just going to leave it. In February she'll have an ultrasound to check on it and we'll pray and keep our fingers and toes crossed that it doesn't start giving her trouble. And that's that!
Scott and I were talking Monday night how funny it is we've been told our daughter has a cyst in her liver and how relieved we are. Mind you we've had 4 years of experience with this so that's how, in the grand scheme of crappy livers, this is not a big deal right now.
If any fellow liver disease parents are reading this and have experience with dialated bile ducts and/or cysts in the liver, please share your experience with us. We like to be armed with plenty of information for when this sleeping beast awakes.
Thank you so much for your prayers for Shelby. They mean so much to us and we can feel the support everyone is sending her way.
Yes, unreal, I know. 7. Seven. 1,2,3,4,5,6,7! Yesterday my firstborn turned 7. She had a wonderful day and, as you can tell by this picture, is cuter than ever!
Shelby couldn't wait to give Riley her present. She woke her up yesterday morning to give it to her. Riley is a bit sleepy still in this picture.
Here is Riley's most prized birthday present. A beautiful vanity set from Grammie & Papa. Also you can see the flowers she received from Uncle Freddie & Auntie Lu from Florida. They're beautiful!
And this picture just shows you the cute things they do that help keep Scott & I from focusing too hard on all the tough things in life. Our hula girls. Oh yeah, they did the hula dance for us, too.
Today we'd better hear from Chicago on what the next step is with Shelby or I will not be a happy camper. Also, today I have my 16-week check-up with my OB. I have some extra testing that needs to be done, so please send some prayers my way. Thank you!
Shelby last Friday before and after her CT scan
The results showed "normal emptying through the liver into the bowel," "no contrast goes into the cyst," and "doesn't appear to be bowel from surgery or bile leak." What does all that mean? Well, the doctors were hoping that contrast did go into the cyst so they could see its exact location and what it is attached to or possibly filled with. But it didn't show any of that. Now, on to more testing. We have to wait for Dr. Deutsch (Rockford) and Dr. Alonso (Chicago) to decide what the next step is. Most likely it will involve inserting a needle into the cyst while Shelby is sedated, drawing out the fluid, and then inserting dye directly into the cyst to see where it goes. Ugh. We just need an answer as to what this thing is!
Please continue prayers for our sweet girl. I will continue to keep everyone updated. Thank you.
Look close. She lost her 2nd top tooth.
Shelby's CT scan was today. Other than the 2-hour delay because of a miscommunication between anesthesia and radiology, the test went fine. Daddy, Mommy, and Papa got to be with her as she went to sleep. Of course, Shelby will tell you she just decided to close her eyes for a while. She was not happy about drinking the CT contrast, but she managed. There were tears, but 10 ounces were downed in her new Sponge Bob cup. She fell in love with the wagon at the hospital and we spent much of the 2-hour delay pulling her through the halls in her "bathtub." She took a white blanket and would spread it out so it was very smooth and then lay under it. The blanket was her bubbles. Too funny!
Dr. Deutsch, her local GI, called a little bit after 5 p.m. with the results. NO TUMOR/MASS!!!! Thank God! It does not look like cancer. There is a fluid-filled cyst that they can see, but they don't know where its coming from. Is it in the liver or behind the liver? What is it filled with? Why is it there? All those questions remain unanswered. It is most likely something related to her Kasai procedure and liver-related, but they weren't able to get a clear enough picture from the CT scan.
So, what do we do next? On Monday Dr. Deutsch will order a HIDA scan. Shelby had one when she was under a month old and that was one of the big indicators that pointed to Biliary Atresia. Hopefully with this test, the dye will go to the area where the cyst is, showing where it is coming from. With today's test, the dye did not go to that area that well, making it difficult to tell what is causing the cyst.
If the HIDA scan does not give them good results, the next step with be going in with a needle. They'll drain the cyst to see what the fluid is and shoot in dye to see where it goes from the cyst.
Thank you everyone for the prayers for her. She still needs them. While its a relief that there was no mass and that its not looking cancerous, there is still concern as to what exactly is going on in there.
