She Is Worth It!
It is very frustrating to know something is off with your child, but not know exactly what it is. I blogged a few weeks back about my visit with a certain "sleep specialist.' I won't go back over all the details about how unsatisfied I was with that so-called office visit. Just know that the only reason that Eden received a referral for a sleep study, is because her parents were relentless. We basically told him what we wanted when he suggested that she was having "normal" sleep behaviors. There is nothing normal about my child attempting to catch her breath in the middle of the night and extending her neck just to be able to sleep. There is nothing "normal" about this happening constantly throughout the night. Fast forward to the results from her sleep study. I call said doctor to discuss the results that were made available to us on the hospital's patient portal. I immediately call to discuss the finding because several things had changed since her last sleep study in April. For April's sleep study, Eden's results read... obstructive apnea and hypopnea events with oxygen desaturation of 90%-predominantly during REM sleep. As of 8/23 this has changed to obstructive apnea and hypopnea events with oxygen desaturation of 71%-predominantly during REM sleep with central apnea events (without significant desaturation). Some of the recommendations were...upper airway patency and to return to ENT. Being the parents that we are... the changes were concerning and so we reached out for explanation. I asked that said doctor or PA return my call to discuss results when available. That call never happened. We received an email telling us to basically follow through with what the good doctor had suggested we do in the first place... "normal" sleep behaviors. He wanted us to be okay with the fact that Eden was acting out at night and that the "mild" sleep apnea was nothing to be concerned about. Well, as a Southern Belle... I will allow my reply to that email go to the grave with me. Needless to say, we took our concerns to a doctor who is not only a pediatric sleep specialist but also an ENT... highly recommended. The whole setup was different. Let me just mention something off topic here... when we walked into that office today...we could tell that they were all about their patients. I almost felt like we had walked into a preschool. Now back to this new doctor... he actually listened to me without the intent to respond. He wanted to understand what was going on and what had changed. He went through all of Eden's past test, surgeries, medications...everything. To not make this blog too long.... I will cut to the end results. He assured us that we had good reasons to be concerned. He also stated that there was nothing 'insignificant" in her sleep study. He explained why she would be waking every hour (according to sleep study results), and the correlation between the "mild" sleep apnea and the 'insignificant central apnea. Stating that while separately... it may not be a huge issue, but together... they were certainly causing sleep disturbances. Also, the other thing that no one wanted to explain to us... "upper airway patency." Eden had a procedure back in Feb 2017 called a Superglottoplasty to correct her laryngomalacia. The new doctor explained that there may be scar tissue build up from the procedure that may also be causing some of her breathing issues (as it did before it was corrected). He checked her ear tubes to make sure they were still in place and functioning. He would also like to remove her tonsil, shave her adenoids down again and look to see if there is any scar tissue present from the Superglottoplasty procedure, and take a look at a few other things... down to her lungs. What a major difference right? We went from ‘said doctor’ not wanting to do anything to ‘new doctor’ wanting to do several things. Trust me when I tell you that we wanted to be wrong about all of this. It hurts my mommy heart when something is wrong with my child... even when it’s just allergies. I want her healthy and well and not being cut on, and being placed under all this anesthesia. It never gets easier... having to have your child put under. The anesthesia is more concerning than the procedures. But the thought of something happening to her, that we could have prevented outweighs all fears. We have instincts for a reason... I prefer to be told I'm wrong several times, than to stand by and do nothing, because of some doctor that attempted to silence me with his degree. One thing he does not specialize in is the daily life of my child. Hear me ROAR! At the end of the day... we just want her to be okay. I'm relieved to know that there is a plan in place. A plan that several other specialists will get together and discuss before any of this takes place. We are looking at a possible late September to early October date to get these procedures done. Thank you all for the many messages of concern, support and love. We appreciate it all. -One Love