Thursday, June 3, 2010

There is always drama

I have learned that there can always be some drama when you are trying to advocate for your child and there is someone on the other end who wants to deny you services. Last couple of weeks we have been dealing with some major reflux and sleep apnea. Do you think we could get a sleep study referral. I will not recount all that we went through because I honestly don't have the energy to go back to the anger that I felt. It can be so draining.

Wysdom always has had some apnea in my opinion. For sure he has had reflux and horrible reflux at times that entails throwing up and gagging more than 5 plus times a day. We have never really counted the full amount...on those days it is just to crazy(I am afraid to know the real number, it could be double digits on some days). So a couple of weeks ago(before we started the blenderized diet)Wysdom had another crazy bout where we have to put him on pedialyte. So after this I was bent on getting some further appointments. I know enough from all of you mom's out there that apnea and reflux can lead to permanent damage to the lungs and heart. So I thought I could call up our doctor and as for a referral. I could never have been more wrong.

Long story short, after fighting, arguing and calling around and doing some detective work so to speak. We got in for some preliminary appointments. Wysdom was seen last week and had a neck xray to rule out and obstruction and a referral to our ENT for a sleep study. As well as an EKG to rule out any damage to the heart from the apnea. The crazy thing is this and it's crazy. By the time we had gone through all the drama and argued for days to get an appointment, we had already found our own partial solution. To remove formula from his diet!!!! So NOW we have a very different child on our hands. He is sleeping better and refluxing less. So now we have many appointments for the future to deal with but for now we are rejoicing that the apnea and reflux have calmed down enough that I can go to bed before 3 am and that he can sleep in a bed a little and not just in a bouncy chair.

So in realty it is that the drama has pushed us to take things into our own hands and not depend solely on others for our son's well being. It is the drama that caused us to move to a Blenderized diet of real food that we feed Wysdom via the g tube. It is the drama that has lead us to some real answers. So as much as I hate the drama. .it helped us this time.

His x ray and urine sample came back good. Next we go to the ENT at the end of the month and go from there!!!


Rochelle said...

Sorry for the drama. But, I am so thankful that he is doing well without the formula. I pray that he keeps doing well for you and you all get some much needed rest.

Stephanie said...

So sorry for all the stress and drama but glad to see Wysdom is doing better.

Lisa said...

hate the drama... but love that he's doing better and you'll hopefully get some answers soon. hugs.

Carrie said...

Ugh! The health care system can be SO SO frustrating! Good for you for pushing until you got the appointments/tests you want--sometimes I feel like giving up!

I'm so glad you figured out that formula was part of the problem--hopefully Wysdom will be more comfortable and you guys can get much-deserved rest!

Arisa Alexanian said...

Good for you! What I learned when Michael was young was to follow my "mommy gut feeling" sometimes. if I felt that something needed to be investigated and I was being blown off by a medical professional, I would keep pushing until I got what I wanted or they explained it to me in a way I was comfortable doing something else. It can be exhausting but every time you feel like giving up or in, you look into the eyes of that little angel and we keep pushing on. We are their advocates until they are old enough to speak for themselves.
BTW, Michael had horrible reflux as well and we had to take him off all dairy including any formula that had dairy included. Once we moved to rice milk, his reflux subsided. And once we got him on real food (pureed) he did way better. I am glad the blenderized diet is working out so well.

R. Eductil said...

Whether it is drama but wysdom is doing better.