Naomi needs a liver transplant

It has been determined that my granddaughter, currently 5 months, will require a liver transplant before she turns 1. The last week was spent at the Edmonton Childrens hospital.  My son, daughter in law, granddaughter and both grandmothers (myself included) travelled the 2000 km for a week of testing, teaching and information regarding the process required for transplant and organ donation.

We started the process with more testing for Naomi, she had a MRI, CT scan, ultra sound, X-rays, ECG, echocardiogram, blood work....lots of bloodwork, so much that they had to take it over days because they maxed out the allowable amounts to be drawn each day.  After the testing it was appointment after appointment meeting with each medical professional that makes up the transplant team.  The occupational therapist and neuropsychologist both did base line assessments on Naomi so they will be able to determine any loss she may have as a result of the disease progressing or the surgery.

We met with an infectious disease specialist to discuss accelerating her vaccines as her immune systems will be severely compromised after the surgery and for the rest of her life.  After transplant Naomi will be put on anti rejection medication which will help with the transplant however also makes her vulnerable to every virus out there.  The infectious disease specialist also discussed with us the many potentially dangerous situations Naomi will need to avoid, severely limiting contact with anyone with a virus, avoiding contact with birds (including chickens, her other grandmother is a chicken farmer), reptiles (her parents will be getting rid of their geckos), avoiding eating any game, never able to get a "live" vaccine after surgery, etc.

We met with the transplant surgeons to discuss the process, timing and risks involved.  It has been determined that ideally Naomi must grow for the surgery to have a better potential for success.  It is preferred that transplant patients weigh at least 10 kg and Naomi is currently 6 kg.  As the liver disease progresses the ability to grow is severely limited as the body is not able to digest the fats in the food and the body stores fluids around the damaged organ limiting room for food.  We have already been seeing signs of these issues for Naomi so the doctors will need to continue monitoring her trying to determine the optimal time for surgery.  A dietician is also involved to guide optimizing Naomi's feeding for the best growth potential.  In the future Naomi will require tube feeding so she can be fed 24 hours per day but for now she is being breast fed and getting a high calorie supplement that doesn't require bile to break down the fat.

A cardiologist and neurologist both met with us after testing as they both look for any possible risks that might affect the surgery outcomes.  An allergist was brought on as Naomi had a reaction to one of her medications after the last surgery and they need to determine all risks before the next surgery.

We had a teaching session that explained all the steps involved in waiting for a donor, the type of donors, getting the phone call saying they have an organ match, surgery, and the steps to recovery.  When the surgery does happen Naomi will be in the hospital for 4-6 weeks, then discharged into the hospital community for a couple months before she is able to return home.

With a liver transplant there is the option of having a living donor or a cadaveric donor, your liver is the one organ that regenerates and the part that is removed will grow back.  Both of Naomi's parents started the process to determine if they would be an organ match for her.  Meeting with the living donor coordinator we learned that a living donor needs to be 18-55 years of age, have the same blood type, weigh 60kg or less, not be overweight, have a small frame, healthy habits and good health.  The testing for the donor is similar to the testing for the recipient as the goal is success for both parties.  While in Edmonton it was determined that Naomi's father was not a good match due to his stature but they are still testing her mom.  Ideally parents aren't desired donors as they are so concerned about their child that they don't make very good patients and look after their own recovery.  The recovery time for a donor is 3 months, meaning full recovery by 3 months.

We finished our week with a visit with a social worker who was there to share what resources are available and things to consider.  Naomi and her parents will be moving to Edmonton for 3 plus months, her parents will need to be available to support her limiting their ability to work, they will need to set up a temporary home in Edmonton while maintaining their current home, if Naomi's mother is the donor she will also need support to help her recover.