Dwarfism

Worth it in the end

Now that we are about 4 months past Nora’s tonsillectomy and adenoidectomy, I can share our experience with you all. It was truly one of the hardest procedures we have been through since birth. She’s been through a lot but I think we’re both pretty traumatized by this one. However, now that some time has passed and seeing where she is now, it was all worth it.

I will start with some background knowledge…

Nora has had sleep apnea since she was an infant. At times, it seemed it may have resolved but issues kept creeping back in. Her tiny nasal passages, midface hypoplasia, and smaller throat may have been to blame. As she has grown, her tonsils and adenoids have also grown. Unfortunately, since her passages are so small, even the slightest growth in tonsils can make a big difference in her breathing and general sleep. Nora’s tonsils were big. Too big. Many nights Nora awoke gasping for air, choking, coughing and was not getting good sleep. It was awful to witness. We decided to skip the sleep study and head to surgery. It was determined that Nora would have her tonsils and adenoids removed in hope that this would help her get better and healthier sleep.

Anesthesia for a toddler is always worrisome. Anesthesia for a toddler with achondroplasia can be stressful and scary. Nora has been sedated many times in her 3 years. Each time is nerve wracking, even with her amazing team. I always walk in with a list of concerns, questions and facts for the anesthesiologist. Some are more experienced with dwarfism than others. Sedation for children with achondroplasia comes with more possible issues than the average size child, especially for those with sleep apnea. Nora has needed to be intubated in the past during a procedure due to her inability to breathe on her own while under.

For some, getting an IV is a traumatic process. We learned this the hard way and luckily since then have been able to follow a plan to make this part as smooth and pain free as possible. Due to Nora’s inability to fully extend her arms, her small veins (she gets that from me) and the extra skin, putting in an IV is a challenge. The first two times there was screaming and too many attempts. Watching it was traumatic for me and I knew we couldn’t do that again. Nora is now sedated with a mask prior to putting IVs in and if possible it is put in her foot. Thank goodness.

Recovery was rough for Nora. She stayed in the hospital for some monitoring. We had some unexpected issues and it was really hard on this mama heart. However, I can say now, looking back that it was worth it. She’s breathing better at night, snoring is less and so far it seems she’s not having apnea episodes. We will continue to monitor and plan a sleep study should symptoms come up. Nora still talks about her surgery and her tonsils. It was definitely one of her more challenging procedures. Worth it in the end.