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. 


Margaça said...

When Martim had his transplant I had my daughter with me so I did not cried, because I did not want her to feel insecure with daddy and little brother in surgery...

4 days after, I still was fighting against my tears, but that night, a sweet nurse gave me a hug and I cried, and cried...poor nurse!

But that helped me so much!

take care!

moreena said...

Hugs, my friend. Wish we were closer so that we could go out together on nights like these. I'm still a bit of a mess, years later. I'm not sure what helps, but sitting and reading with Annika (or just sitting and chatting) sometimes leaves me feeling a bit more peaceful. It's hard to lose that safe feeling, but there can be safe moments to be enjoyed together. Moment to moment to moment.

Val said...

This all makes sense to me. And the family photo at the top now is just beautiful. :) Thinking of you.

amber said...


It is so hard dealing with all of this. After Dylan's GI bleed I too am suffering from PTSD. It is so painful watching your child suffer. For the most part I know I was in denial before Dylan's bleed. I almost felt like he would make it without transplant. Surgeries, PICUs and life/death experiences make it all too real. Hang in there you are doing a great job and are an inspiration. As always prayers for Shelby and I hope she continues to do great!