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Germs and sicknesses became a real issue for me after our son who has Alagille syndrome (ALGS) had a liver transplant. I never knew how obsessed I could become with cleaning, hand washing practices, or making sure I knew if the people we were going to socialize with were sick. 

As soon as my son was released from the hospital following his transplant, my other kids were recovering from a virus. Everyone assumed it was the virus my son had before he went to surgery, so we were taking mild precautions. However, like the crazy mom I am, I rushed home to wash all my couch cushions and pillows and clean every single toy we have in our home.

We took the time to set our other children down and went through proper hand-washing procedures.  We made sure to let them know when, where, and how to sanitize. Once we got settled, my husband went to the store and bought him new bedding and pillows to make sure we had a super clean slate. We were so afraid he’d get sick. We knew that if he had a fever of 100.4, we needed to visit the emergency room (ER) right away. 

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Not a lot of people understand what it’s like to have an immune-compromised kid. Most of our family and friends don’t understand how fragile we sometimes must treat him and how important it is to let us know if they are sick before coming to visit or spending a lot of time together.

Read more about experimental therapies for ALGS

Generally, if he gets sick it causes me a lot of anxiety and worry. I watch him closely for any symptoms that would make us go to the ER. I’ve watched as his siblings fought off a stomach virus that landed him in the hospital for a 2-day stay and then messed with his neutrophils for months.

We did frequent labs as we methodically peeled away the meds he was on to try to help him recover and had a visit with hematology to start looking at other possible concerns. I’ve watched while we’ve had to do weekly and biweekly lab draws because the numbers were funky because of sicknesses. We’ve had to change medicines and doses, which all must be monitored by labs because he got sick. Even a little cold can disrupt his body and cause issues like weekly lab draws. No one wants to go through that. 

Now that we are almost 3 years post-transplant, I’ve relaxed a lot. However, I still try to be cautious because I see how even the smallest cold can cause setbacks or present new hurdles to climb. I work daily on letting go and letting him be a normal kid. I cherish his childhood years. I try to live by the words his transplant team once hold me, “we transplanted him so that he could live.”