Expect The Unexpected {Apnea and Advocating}

Being a mom is hard.  I am the first one to admit that having small children is not always hair bows, perfect family outings, kids who are predictable and those brilliantly posed family portraits.  Some moms chose to share only the good and some want to tell you that each stage is HORRIBLE.  I am a realist.  I love being a mom {most of the time} but honestly I hate it at the same time.  I hate the worrying, the constant struggle to know what is the right thing to do, I hate the looks and people judging what I am doing versus what they choose to do, but I have to say that having a child who you have to constantly advocate for and see get poked and prodded a few times a month is the WORST.  I started to feel sorry for myself and a bit depressed because of his constant doctors appointments.  I felt alone even though I have a stellar support group.  I felt like each doctors appointment led us to another.  I felt like I was letting my son down by not figuring out what was going on with him and that was my job to keep him safe.

Addressing Sleep Apnea

I am amazed that doctors are able to diagnose small children {even babies} with sleep apnea and better yet be able to narrow down what may be the cause of it.  After visiting the sleep doctor we were referred to an Ear Nose and Throat {ENT} doctor.  At the ENT the doctor was able to make the decision to remove his tonsils and adenoids {Tonsillectomy and Adenoidectomy}.  I was actually relieved by this decision because the sleep doctor explained to me that if the sleep apnea was not caused by having enlarged tonsils and adenoids, then we would have to look at other options.  After the doctor made this decision we were escorted to a room to speak with a nurse about the surgery.  She explained that since he is so young it would not be an outpatient surgery {as many Tonsillectomies are}.

Tips For Advocating For Your Kids

1. Never end the search without an answer

We had many bumps in the road and will continue to find “the answer” as to why this little man had two big episodes {that looked like seizures} and continues to have much smaller scale ones during his sleep.  I went to his doctor’s appointments prepared.  I was ready to ask questions and brought up different diagnoses that I thought he could have along with tests that I felt he should have.  We have some answers {it took time} but we will continue to advocate in making sure he is a healthy growing boy.
2. Don’t let the doctors make you feel silly or dumb
This has only really happened to me with one of the doctors who our little man has come across so far and I regret not speaking up.  She came into the room, looked at his history and made a decision without really even speaking with me.  She did ask me a few questions where I felt like she was trying to make me feel dumb.  For example she asked if he was right or left handed and I answered that he uses both and that I have not noticed yet which.  She said, “good answer” in a condescending way.  She brushed off what had happened to him and made me feel like I was silly for bringing him into her office.  I will not let this happen to me again, next time I will speak up to the doctor, nurse, etc.  You should not feel silly or dumb if you feel that your child has something going on {remember it is your job to keep them safe!}
3. Keep Calling!
Right after the first “episode” the pediatrician referred us to a neurologist but it was taking some time.  I wanted him to be seen immediately {do you blame me?} I kept calling the pediatrician’s office reaching out in order to gain more referrals and to get the ball rolling on testing.  I felt a little like a psycho but my mom {who is in the healthcare field} assured me that advocating for my son was my job and to continue to call/bug the office in order to get what I felt my son need {the office staff knew me by voice :)}

4. Get a 2nd opinion

I never wanted the doctor or specialist believe that I did not trust them by asking for a second opinion but after actually getting many opinions {and them all differing} I am NOT worried about asking or getting a 2nd {or even 3rd} opinion.  It is again my job to take the necessary steps to make sure my kids are safe and healthy, so by receiving extra opinions when necessary is a priority.

5. If it doesn’t feel right, ask questions

As I mentioned above I did not agree with how we were treated or how my son was overlooked because he was a “normally developing child”.  I now am comfortable questioning the doctor, nurse, etc. about any information that they give me.  I ask a lot of “why’s” {which may be annoying for the doctor, oh well!}.

imageAs we move forward and continue to follow-up with doctors/specialists, we continue to learn about health care, health insurance and of course more about our sweet little boy.  The past few months I have learned to take a deep breath and trust {with much advocating} the doctors in making decisions.  I have learned that I am doing what is best for my kids.

Thanks for stopping by!




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