Thursday, July 26, 2012

Staying Positive


A couple weeks ago, we had an appointment to get Jude's sleep study results from the latest study done since the tonsillectomy.  I'm just posting about it now for one main reason...


I didn't want to write an emotionally puffed up blog post.


That being said, I guess you are figuring out that the sleep study didn't go all that well.  Jude's obstructive sleep apnea had not improved not one little bit.  He is still obstructing his airway around 70-75 times a night.  However, he was still keeping his oxygen levels up at 97% throughout the entire night which is pretty encouraging. 


So with this being said, our options are as follows.


1.  Have some sort of reconstructive surgery
2.  Wear a CPap to sleep at night
3.  Don't do anything at all and just let it be.


I felt a peace and a courage as we talked to Dr. Thomas about the options (WONDERFUL MAN, by the way), and I very directly asked what my rights were as his parent.  Can I make this choice myself without being reprimanded by the his medical team?  Do I have the right to say, Thanks but No Thanks?


The doctor encouraged me by saying he completely supported my decisions and would allow me to make them without influence.


So we decided to just let it be.


I explained to the doctor that we would try to get Jude used to a CPap mask, but if he fought it too hard, I wasn't going to force the issue.  I'd be more worried about him strangling on a tube or cord than a negative consequence of the apnea.


I also said that there was NO WAY I'd put Jude through some super invasive, high risk, appearance altering reconstructive surgery for a chance that it may help his apnea.  The risks just out weigh the benefits.


I also told Dr. T that my ultimate goal with Jude is to give him the happiest healthiest childhood possible for Jude.


When I finished, Dr. Thomas said that if he was Jude's parent, he would have made that same decision.


So where are we now?


Well I have an order for a mask that I will be picking up soon.  We will only get the CPap machine if Jude does well with the mask.  Please just pray for God's will in this!!  I'm not sure how to pray any other way!


Then next week we have an appointment with a craniofacial cosmetic specialist.  We are only consulting to see if there is anything lower risk we can do for Jude such as repair a possible deviated septum or maybe as great as a minor rhinoplasty... So prayers for that as well!


In the meantime, we have been so excited to gather up school supplies, back packs, nap rolls, and uniforms.  I can't believe my baby is about to start preschool.  Now I know he went to LSU for a few semesters, but that was two 3 hour sessions a week... this will be full days!! I'm very excited for him, though.  He just loves his teachers and going to school.  


That's all for now..


A new friend of mine who has sweet little twin boys recently posted this scripture in Instagram (LOVE INSTAGRAM!!) and it was a nice reminder that all this is just one. huge. blessing. 


"To whom much is given, much is required."
                         Luke 12:48



5 comments:

  1. Isn't instagram the best?!
    Praying for your boy. I'm so glad you have a great doctor! :)

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  2. So thankful for you that you and your doctor are like minded. I pray that God will continue to fill each one of you with His wisdom.

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  3. As always my prayers are with you . Follow your heart and you can't go wrong . You are a wonderful mother to both of your babies:)

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  4. Praying! Aren't great doctors such a huge blessing? They mAke my heart so happy!

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  5. It took a lot of courage to write about your experiences and I'm sure that it is very appreciated by many. Sharing your experiences could be a blessing to someone else.

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Thank you for taking the time to share a kind word with me!