Thursday, January 20, 2011


I thought the smile was a good title for this post.  I'm feeling a bit better about things and Shelby got a FABULOUS report in clinic Tuesday.  The surgeon and her hepatologist are thrilled with her recovery.  Her spleen has shrunk about 3 cm in 5 weeks and her wbc and platelets have doubled.  Of course, that does not mean they are "normal" yet, but I have faith (and so do the doctors) that they will get there.  If all remains well, we go back in 2 months for another ultrasound of her shunt; if all looks good then, we go back in 3 months.  The doctors are very optimistic that this is really a GREAT thing for Shelby and now, having been through it, I feel wholeheartedly that it is, too.  I am very relieved that she *only* had to recover from surgery and that we are not having to worry about rejection and all the other complications that can come with transplant.  Not yet.  You're probably not ever "ready" for that until that is your last possible option.  I pray that this gives time for Shelby to grow, live and feel "normal" for quite some time before we have to head down that transplant road.  I pray that medical advances come along in that time period that allow for safer anti-rejection meds and that organ donation becomes more of the "norm" for people to choose to do so that the waiting list is not so long.  I pray for us as a family to look at Shelby's life in a new way; different than we have, especially the past 2 rough years.  I pray for Shelby to look at herself as a healthy kid who happens to have liver disease, not as a sick kid.  

Our trip to Chicago did not quite go as planned as my Mom was not feeling well Monday morning and was understandably not up for the trip.  Scott made several phone calls to find out if it was even possible for him to miss his first day of clinicals for this semester and found out it was o.k.  We headed into Chicago driving no more than 35 mph for the 1st hour, but made it in there safely on Monday.  We ate supper that night at Shelby's favorite, Bacino's, and stayed at the Kohl's House.  Tuesday she had an early appointment with Dr. Jill and then we dashed off to catch the train to catch the bus to the Aquarium.  That was a long trip, but we had about an hour to spend at the Aquarium once we got there.  We opted to just take a cab back to Children's so our travel time would not be as long.  The rest of the day was filled with clinic time and was zoo-like considering all 5 of us were there.  One nurse said to Scott "Oh.  I didn't know you had so many girls."  We headed home late, but made pretty good time and slept HARD that night.  

Shelby is back to school full-time and back to gym.  Her lower back pain gets less and less each day.  The hepatologist was impressed at how well she sat up after lying down to be examined.  We were told by the surgeon no high-impact sports (like sledding) until her spleen and platelets improve even more.  Turns out that had we consulted the surgeon on if her activity should have been restricted when we asked her hepatologist we would have gotten 2 different answers.  The surgeon is in the restrict camp and the hepatologist is not - interesting.  Phew - thank goodness nothing ever happened.  My girls are adrenaline junkies and play HARD.  Shelby can tackle an adult pretty darn good. :-O

Hopefully you followed along my rambling post good enough to get that we are all improving and plan on continuing to.  Please pray for Scott as he started nursing classes back up again this week and starts yet another "new" schedule at work.

Take care, everyone, and STAY WARM!


Click on picture to see entire album
Chicago January 2011

Sunday, January 16, 2011

Still hanging in there

Life is moving at its busy pace.  Its about to get busier, too, as Scott begins his spring semester this week, starts a new work schedule and (hopefully) Shelby goes back to school full-time.

Tomorrow my Mom, the girls and I will head into Chicago for a day of fun at the Adler Planetarium (free w/Discovery Center membership - yay!) and then the Shedd Aquarium (FREE day there! - bonus).  We will spend the night at the Kohl's House and Shelby will have a full day of appointments on Tuesday.  This will be the first ultrasound of her abdomen to make sure her shunt is still open (please pray specifically that it is) and to see her surgeon.  She will also meet with her beloved Dr. Jill and her hepatologist, Dr. Alonso.  Busy, busy, busy!   I have myself really pumped up that her labs are going to be so awesome so they better be!  Scott can't make the trip with us due to work and school so that's why I've recruited my (poor) Mom!  I told her to wear her walking shoes and take her vitamins! :-)   

I'll update again after our trip....

Tuesday, January 04, 2011

Elephant in the Room

I have not had trouble sharing on here before.  That is, sharing in depth Shelby's medical situation.  I have touched the surface of talking of how it affects our family...the surface.  Tonight I am going to do my best for me and for those out there reading this blog who may be facing this same path.  Finding others going through or who had gone through what we were facing when Shelby was a newborn is what saved me.  Its what said to me "others have survived this, we can, too.  Biliary Atresia is NOT a death sentence.  Transplant is more common than you think."  Through talking and sharing with others on C.L.A.S.S. kids and now on Liver Families I have persevered, and, I believe for the most part, thrived.

Shelby's recovery from her shunt surgery is going amazingly well.  Today, we had some concerns about this "lump" that appeared today.  It was not there last night.  It is tender to the touch and red (although that does not show up in the pics well) and feels hard when you touch it.  I can push everywhere else around her scar with no problems and it is nice and soft; not at this area.  MANY phones calls were made and I finally heard back this evening from one of Dr. Superina's associates.  He said if she has no fever then just watch it.  Great...waiting for that shoe to drop.  Honestly, I'm concerned that its a hernia.  When she coughs, it bulges out more.  Since this is something involving her surgery, we would have to go to Chicago to have it looked at.  Right now, Scott and I have determined that it can wait, but it is still not sitting right with me.
The redness does not quite show up and its ABOVE her incision, not on it.

Please excuse my poor attempt at using "paint" to mark the area I'm talking about!
Back to my "sharing."  Despite Shelby doing so well and her recovery being so amazing, I am not doing amazing.  I am still a bit shell-shocked from all this.  I already have an appointment set up with my counselor for this week to talk about this, but if I don't share it on here, what happens to that other parent experiencing something similar who is afraid to talk to someone and share their feelings?  I know how much I have been helped by others, so now its my turn.  The PICU was a scary place.  I really believe that the weeks leading up to Shelby's surgery and all that worry about it were less traumatic for me than spending 6 days in the ICU.  Post-op Day #2 when I had my "breakdown" was to put it mildly.  I cried so hard that I felt physically exhausted; like I cried it out from my toes all the way up my body.  Buckets of tears fell, and, get this, my child was doing pretty "good" for an ICU patient.  Seeing her improve after her blood transfusion and being put on the high-flow oxygen was helpful...until Friday night.  I was SO happy to have all 3 of my girls together and my Mom there, but there was a death in the ICU that evening.  A death of a child.  A grieving family in the halls.  White curtains set up for privacy.  An entire hallway closed off.  Gut-wrenching.  It is sitting with me and not moving.  I know that someday we have to go back to the ICU.  She will need to after her transplant and will be much sicker after that surgery than she was after this one.  I am trying to not dwell on that future and enjoy how well she is doing, but part of me just won't let me.  Posttraumatic stress disorder is so common in so many people for so many reasons.  It is frustrating and scary to go through it knowing that you should not be so worried.  Sleep SUCKS for me since Shelby's surgery.  Many nights its 3 a.m. before my eyes will even attempt to close and then I am haunted in my sleep.  Horrible sleep.  Restless sleep.  I pray to God for peace; I plead, I beg.  But this is a part of the physical side of me.  One that will take time to work through and most likely an increase in some of my meds.  Sigh...I will survive and then I will thrive again, but its going to take some time. 

Sunday, January 02, 2011

Lookin' good

Upper left - right before surgery, Upper left - day after surgery, Lower left - yesterday, Lower right - today