PTSD and Transplant

I've always joked that we have PTSD from Kai's transplant. In truth, I wasn't kidding. 

"Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you've seen or experienced a traumatic event that involved the threat of injury or death." (www.ncbi.nlm.nih.gov/)

For at least the first year after her transplant, I know that my friends and family probably got sick of me talking about it because it was ALL I could talk about… all I could think of. I would shudder when pulling to the side of the road, and sometimes break into tears, when an ambulance screamed by, or get furious with people who didn't give the emergency vehicle way, remembering a tiny, yellow, and very scared Kai riding in the back of the ambulance on our two-hour trip to Georgetown in DC from Sinai in Baltimore, where we were told she might not make it through the next 24 hours. 

Nightmares, flashbacks and disturbing thoughts all interfered with my daily life. The farther away from transplant that we got, the less intrusive these things would become, although they still effected me. I thought it was normal and, for what we went through, it is.

Until this past November when Kai was hospitalized for CMV and needed a PICC line to administer a low-grade cytotoxic medication that would, potentially save her life. During the routine procedure, unbeknownst to the anesthesiologist, her IV blew when administering the lidocaine to make her sleep. As they began the procedure and I was leaving the room, she woke up. The incision was made, the catheter partially inserted, if she moved too much, it could puncture a major artery. If they pulled it out, it would be 3 more days until another surgery could be scheduled, which meant 3 more days before Kai could get the medication that might save her life. The pharmacy could not get more anesthesia to the room in time. She would have to be held down while the procedure was completed. 

So, I held her. I draped my body across hers and whispered soothing words and sang "You are My Sunshine" with tears streaming down my face as she screamed and cried, "No, Mommy! Don't let them do this to me!". They continued pushing the line up the artery to her heart and stitched it in place before a dose of inhaled versed arrived and could be administered. She fell asleep in my arms, sweaty and pale with tears on her cheeks. I felt like I might collapse. 

November through February, Kai was hospitalized 3 times and received 2 PICC lines. She woke up during the 2nd placement, as well, but medicine was on hand that time to be administered immediately. 

I began having severe episodes of fatigue where my body felt so heavy and tired I could barely pull myself up the stairs or lift my arms. I would sleep for days, recover to some degree, only to have it reoccur. I had severe joint pain, my hands and feet were going numb and there were some other strange things happening. 

The 3rd time she was hospitalized, I noticed a bunch of tiny, red spots cropping up all over my legs, torso and arms. 20-30 overnight. I called my doctor who urged me to go to the ER. "petechial spots," they said, and testing for cancer ensued. When that came up negative, another battery of tests was ordered, and scans. I was sent to specialist after specialist. Finally, I went to see a rheumatologist about a possible auto-immune disorder. He asked me several questions and then concluded, "You have PTSD. These episodes are from adrenal fatigue related to the disorder. Your daughter waking up during surgery likely triggered it. You need to see a therapist."

I was flabbergasted! But, sure enough, after further investigation, I had all the symptoms and a direct and obvious cause. 

And I'm not the only one who has it. Kai has it too. She has a very severe case of it, in fact. It causes nightmares, behavioral issues, extreme defiance (even for the defiant age of 4) and destructive or even dangerous behaviors. 

Some of her behaviors are so extreme I not only worry about her right now, but how it could impact her in her teenage years and early 20's. She has begun seeing a therapist recommended by her specialists and her friends in the Child-Life program at Georgetown University Hospital. It was mentioned by another therapist that she could even be developing a very severe form of PTSD called Dissociative Disorder, where the line between reality and fantasy can become very fuzzy and confusing (leading to dangerous and risky behaviors). It's scary. 

For children like Kai, there is no avoiding it. Her physical health must come first, for her to survive, and mental well being must be taken into consideration later. It is something that will recur, quite possibly, her whole life.  

Despite all this, when you see her, most of the time, she is a "normal" 4 year old girl! She is usually a very well-behaved, well-mannered, albeit very high spirited, little individual. She has often been likened to a happy little sprite or fairy. However, some days, she clearly has inner demons to battle and it's like dealing with an entirely different child… beyond tantrums. The normal methods of discipline do not work; her behaviors will only get more extreme and destructive. It's as though she has some pent up rage that must be released. 

PTSD is a real disorder, it can lead to more serious disorders if not diagnosed and treated and it can interfere with daily life, make someone who is usually very patient extremely irritable and moody, create severe behavioral issues in children and much worse. 

I post this with hesitation but, with the intention of educating. For those who have seen Kai battling demons (or me battling mine) and don't understand, for those battling their own and for those who wonder if they or someone they know might be. Get help. There's no shame in it. Only healing.

Once A Liver Momma, Always A Liver Momma

As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.

Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.

When someone announces "THE call has come; a match has been found!" We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill. 

When we hear "There are complications, we need prayers!" We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.

Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were "the lucky ones", and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.  

To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it's a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I'm sorry for your loss does not even begin to adequately cover the depth of my empathy. 

I can say this, though: Once a Liver Momma, always a Liver Momma.


Please keep baby Piper and baby Riley and their families in your thoughts. Piper underwent a Liver Transplant several days ago with complications. She is not receiving adequate blood-flow to her extremities and has been re-listed as status 1A (the very highest) for a new liver. 
Riley is in very critical condition after receiving her 2nd liver transplant and was not expected to make it through the night the other night but, somehow, she has pulled through thus far. 

Weighing In on Kony, the Children of Uganda and the Invisible Children Organization

In the last day or two, a youtube video has been going viral across the internet, promoting an organization, Invisible Children, and a cause to remove Joseph Kony, a brutal war criminal who recruits and abducts children for his army in Uganda.


There is no argument that Kony is bad news. He kidnaps children from their homes in the night and forces the boys to fight in his army and forces the girls to be sex slaves. There's really nothing more heinous than that. He leads these children to kill and mame their own people, even their own families. It's tragic and sickening and there is no question that these people, these children, need help and that Kony needs to be stopped.


Kudos to Invisible Children for raising awareness of this cause where there was none before. They have done a lot to help the people and children of Uganda. In this, they are fundamentally good and their hearts are in the right place. 


However, in addition to being proponents of removing Kony via any means possible - including violence against Kony's army comprised of the very children they are trying to save - and helping and supporting a government that has questionable practices of it's own regarding human rights and violence against it's own people - they have been under fire for the way they appropriate their funds and run their organization. 


While there is no question that something needs to be done, the way Invisible Children and their recent, viral campaign - Kony 2012 - are going about it should be investigated thoroughly and questioned (as should any charitable organization) before you lend your support and your voice to it. Here is an excellent article from the Washington Post with more information on this subject: http://www.washingtonpost.com/blogs/blogpost/post/invisible-childrens-stop-kony-campaign/2012/03/07/gIQA7B31wR_blog.html


NPR Interviews a native Ugandan journalist, who weighs in on the Invisible Children's Kony 2012 video campaign: "The video accurately, I think, displays the evils of this man [Kony]. But it underplays the difficult choices involved in trying to do something about it."
- Author Jeremi Suri

(Source: http://www.npr.org/2012/03/08/148239201/joseph-kony-is-now-a-star-but-will-he-be-caught)

There are, however, other charities working to help the children of Uganda without lending their support to a violent regime that you could consider supporting:
Save The Children
World Vision


More suggestions from Charitywatch.Org: http://www.charitywatch.org/hottopics/uganda.html


I encourage everyone to research any charity and thoroughly look into a cause before supporting it. Usually, there are multiple organizations out there working toward the same goal and not every charitable organization is created equal. Awareness is key; knowledge is power.


Please share this blog and spread the word, if you agree.