News about Liam

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September 25, 2007

What promised to be a great 16th birthday celebration and hope for returning home to a new beginning, ended up being several days of frustration as Liam’s recovery has seemed to stall and all our prayerful expectations faded to new concerns of Liam’s Cystic Fibrosis care.  The entire transplant team was convinced and very optimistic that once Liam’s respiratory issues had been addressed and his new liver continued to thrive he would be ready to return home to San Diego.  There was even some discussion as to the timing of Liam being allowed to return home.  
 
Liam was out of the hospital for his birthday and did his best that evening to enjoy his first ever filet minion, but even though the company was great (Mom & Dad) and the restaurant was his choosing (Daniel’s Broiler on Lake Union) it was obvious that Liam was struggling to be energetic and upbeat.  At first we wrote it off to him missing his sister, extended family and friends and not being able to celebrate his birthday with them, but it soon became apparent that even though we shared a few laughs, the problems were more than emotional.  Liam was unable to hold his meal down and in the process ended up throwing up his NG feeding tube, for the third time.  We decided a good night’s sleep would do him well and decided to hold off on going back to the hospital to reinstall the NG tube until the next day. 
 
Liam’s biggest hurdle and number one concern for all his caregivers is currently his nutrition.  Liam has not been able to take in any serious amount of food and his only caloric intake has been through tube feeding but now he is not even able to hold those down.  He is currently on TPN (IV nutrition transfused through his port-a-cath).  In an attempt to motivate Liam that he is in control of his own health and recovery, and that it’s his disease, his life, his medicine,  he needed to force himself  to take his medicine on time and take care of his nutrition by forcing himself to eat more… turned out to be about as successful as I suppose many father, 16 year old son motivational talks go… and in Liam’s case his attempt to do his part ended up with him loosing all his morning medicine and what little breakfast he was able to take in.  I now understand better how difficult it is for him, as it would be for any one of us, taking the fist fulls of medicines that he does.  I can’t even imagine the toxins from all these necessary drugs running through his body and what they might be doing to his cravings for food and his digestive system.  Yet another lesson in patience and sympathy taught by this young man.
 
Liam ended up spiking a fever of 103 that morning and on top of his nausea and inability to hold down any medicine and the need to get the NG tube reinstalled we set off for the ER.  After spending 14 hours in the ER (11:00 Am – 3:00 AM), two x-rays, two sonograms and a Vascular / GI Contras CT Scan it was determined necessary to readmit Liam for further testing and monitoring.
 
The CT Scan results presented yet another challenge with Liam’s care.  Liam was found to have an abscess approximately two inches long and three inched wide in his abdomen next to his pancreas.   Currently the team is monitoring the abscess with the hope that the IV antibiotics he is on will take care of the abscess.  Lancing and draining the abscess is not possible because of its location so surgically removing it would be the only other option.  It will be a few more days before a decision is made.
 
Even though Liam's new liver is working beautifully his other organs… pancreas, spleen, and kidneys still compromise his successful recovery and continued healing.  No one is sure yet why Liam continues to struggle nutritional as it was everyone’s hope that Liam would have been thriving by now.  There is some suspicion that Liam’s nutritional issues are routed in his overall Cystic Fibrosis care.
 
Please continue to pray for Liam to stay strong and that he makes progress nutritionally.  Once he does he will be ready to come home.