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As a parent of a child with Alagille syndrome (ALGS), the doctor appointments, routine visits, and lab work visits can be a lot to manage. Not only can the visits be time-consuming and affect your family’s schedule, such as a change to work or school schedules for the day, but they can be emotionally draining as well.

My son still needs labs frequently. These appointments were generally routine for us but they’ve become increasingly harder and more challenging the older he has gotten. Today, we had labs. The experience was already heightened because he didn’t want to do it. Who finds lab work fun? My son absolutely hates the tourniquet, so that will cause a few tears right away. After getting him calmed down from that he was stuck, and the blood was clotting. She kept trying to get blood, but a rush of air was heard, and she had to take the needle out. Then it was time for a re-stick. 

This poor boy was so upset. He was already over the fact that he had to get labs, but now having to get stuck another time to try to get blood was very upsetting to him. She examined his other arm and found a vein she wanted to try. She decided it was best to hot pack him for a few minutes to try to get the best results.

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After all that was done, she stuck him again, but this time again no blood. She couldn’t get the needle into the vein correctly and kept trying to rearrange the needle to get blood to start flowing while my son was screaming “ouch” loudly. I told her we needed to take the needle out and stop this attempt. She did as I asked, and we bandaged his arm after another failed attempt. I asked to have someone else try to stick him because we were already there, and we needed to get the labs. The next phlebotomist came in and looked at his arms and was able to find a vein and successfully draw his blood. 

This experience was horrible. Most of the time I feel like we go through our ALGS journey worried about the daily things like sicknesses and various test results, but when things like this happen and we see our kids going through physical pain, feelings and emotions that we’ve shoved deep and far down surface and cause chaos. Feelings of the pain and emotion of ALGS bring me to break down. This reminded me how unfair this disease is and how unfair it is that kids must go through this sort of medical treatment and testing. 

My son is 6 and gets lab work monthly. He has probably had more testing, procedures, and surgeries than the majority of adults I know. The reality of this disease on a child is sad when you think of how much they are burdened with and must bear. It broke my heart to see him cry and to have to sit there and hold him tightly while they poked him, and it caused him pain and discomfort. This is a feeling a lot of parents will never have to experience.