News about Liam

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August 20, 2007

Not positive where we left off with the last up date and accidentally erased a two pager started over the weekend… which I’m sure had too much detail and emotion to share. Good therapy though, but best it was not sent.

Liam had a very, very difficult weekend. As strong as his mind and spirit are his body was failing to cooperate. Friday night started his weekend with an adverse reaction to an anti rejection drug call Tacrolimus. The best way to describe his condition is that he was literally crawling out of his skin. Extreme agitation, anxiety, convulsions, headaches, vomiting, and uncontrollable screaming. 14 hours later he was finally able to sleep with the help of pain killers and sedation. The team immediately stopped administering the Tacrolimus and continued testing his levels to confirm they were therapeutic. Once his levels were reduced they continued its use but at a much lower dose. By Sunday all seemed well… Liam was eating, once again in good spirits and doing well enough to be discharged from ICU to a step down unit.

Sunday afternoon just after 4:00 PM, just two hours being released from the ICU Liam had the first of two seizures. Liam was rushed back to the ICU for testing and monitoring. The second seizure came at 7:00 am Monday morning. CT Scan, MRI and blood work were completed and no permanent damage was found or anticipated. Both seizures are believed to be caused by the same anti–rejection drug that caused Friday’s reaction. With all that Liam has gone through in his life there has only been two times that we thought we might loose him and Saturday night was the second. Our minds took us to a prior conversation with the transplant team about damage to his Splenetic Artery and it possibly bursting causing irreversible damage… but thankfully this was quickly determined to not be the case. The first seizure lasted two minutes and the second just over three. Short term memory loss, a strained back, sore abdomen and the fear of additional seizures were the only lasting impacts of the seizures. Liam is now temporarily off the Tacrolimus and on two different anti-rejection drugs and a new anti-seizure drug.

We are constantly amazed at what a fighter Liam is and what his body can go through. Tuesday and Wednesday have been much better days. Liam’s lungs are doing well, his appetite is once again up, the last of the drainage tubes is out, only one more IV to be removed before he is free of all access point. His smile is back, his future very hopeful. The lesson learned this weekend was to never loose the faith… “Faith is the realization of what is hoped for and the evidence of things not seen”. For us, today Liam has once again reassured our faith, allowing us to remember all is in Gods hands.

We are eternally grateful for all your love, prayers and support.