Showing posts with label aspiration. Show all posts
Showing posts with label aspiration. Show all posts

Tuesday, April 9, 2013

Much overdue update...never forget where you came from...

In the excitement of it all, I realized this blog didn't get the attention it so desperately needed.  You see, when my whole world was falling apart blogging about it was therapeutic, helpful, healing.   Now that my once sick, failure to thrive daughter is a fully thriving, stubborn, energetic three year old, some things just get pushed to the wayside.  :)

On October 23, 2013 OLIVIA DIANNE KELLY PASSED HER THIN LIQUIDS SWALLOW STUDY!     It is a day that will forever be in my top 10 best days EVER.    It was her 6th swallow study.  The initial first one, a complete and utter shock back in August 2010 resulted in Olivia being admitted IMMEDIATELY for observations that lasted 4 days and got her a feeding tube in place.  

Olivia sat through the test like a champion, like the true fighter she is and when they told me she passed I literally cried tears of joy.  I was SHOCKED.  After hearing so many times before " she didn't pass, she is still aspirating" and then trying to figure out the "next course of treatment"  I thought my chance of getting a positive result were slim.   The entire staff was thrilled, as they all became familiar with Olivia.  They all cheered for her! It was a life changing day!  A day we will never, ever forget.  



Although the phrase "Don't ever forget where you came from" is so cliche, in this situation it's really all I can think to sum it up.   I had my first baby at age 23, a completely healthy, uncomplicated pregnancy, a difficult labor which ended in a c-section, but at the end an extremely healthy baby boy who consumed every ounce of love I had within my being.  Two years later,  at age 25, I had another seamless pregnancy, not a touch of morning sickness, a scheduled c-section that went perfect and another beautiful, healthy baby.   And then, just when I thought I had this whole baby making thing mastered, I got pregnant on the very first try for baby number three.  Like clockwork.   I later miscarried that child and was devastated by the loss.   As soon as I got the OK to try again I did, and again, it happened very quickly.   I was nervous but ecstatic at the same time.   And then the morning sickness began.  EVERY. SINGLE. DAY for the ENTIRE pregnancy. And then the soft markers for Down's Syndrome came. A specialist in Boston assured me my chances of a baby with Downs was 1 in 375 but I still had a nagging feeling something was wrong.   And then the pre pre-eclampsia came and got me tossed on bed rest for 4 weeks.  Finally, the day she was born I held her and cried that she was finally here, that she was perfect.   For hours that night I looked her over to see if there were any signs of Down's Syndrome.   I remember her breathing seemed off to me, but thought I was once again overreacting.       It took over 5 months to get a definitive diagnosis and 27 months, countless tests, 10 anesthesia procedures and a lot of anxiety to get a treatment, but the moral of the story is, MOTHERS INTUITION prevails over all.    So, back to don't forget where you come from.  I was the mother who had everything perfect.  The perfect clothes for my kids, the perfect shoes, the perfect play dates.  Yet when you have something challenged as monumental as your child's LIFE that new pair of Nikes really doesn't mean a thing.  I have been humbled.  I have learned what is important in my children's lives and its not having the best material things.   

Olivia's team of doctors at Children's Hospital Boston are truly heroes in my book.   Dr. Reza Rahbar is the most gifted surgeon I've ever had the pleasure of knowing.  He mastered the technique to fix the laryngeal cleft without a scar through the throat.  Only a few doctors in the world know how to do this. And guess who they learned it from?     I cannot ever express my gratitude and love for this man for saving my baby.

They say everything happens for a reason.   Olivia happened to ME for a reason.  Yes, it was stressful, and there was pain and heartache and confusion but at the end of it all, I have this beautiful, caring, STRONG daughter that I know will reach any goal she puts in front of her.   

You did Olivia, YOU WON!!!!




Sunday, February 5, 2012

And now we wait....

Last Tuesday Olivia had her second meeting with the feeding team at Children's.    I told Dr. Rahbar that the first meeting was useless so he suggested I take her to the Boston location because they may be more effective.  So even though in the back of my mind I disagreed, I went.   

After waiting for a speech pathologist (feeding team member) longer than I've ever waited for a well known surgeon, in walks a woman and her student.  Both are all smiles as if this is some sort of fun.  Gwen I think was her name.  So she has a stupid name and a stupid smile and now she wants to ask me a million questions that I've not  only answered 700 times before but are clearly in HER CHART if Gwen just thought to read it.    

Gwen wanted to know why I didn't think it was a good idea to continue to try to thin out Olivia's liquids even though she FAILED her swallow study.  Well, Gwen, I may have went to school for Criminal Justice, but I do think that aspiration of liquids into the lungs may be a serious concern.  
 
So Gwen (the genius) asked Olivia to sing her a song.  Olivia (the mini-Alexis) must have sensed Gwen's stupidity and refused.  On the inside I was laughing.   So for about 25 minutes all we did was watch Olivia tear through an exam room, and take a few random sips of her milk.   Gwen seemed to think that she did well with her swallowing.  Yes, she did, perhaps because it was THICKENED???   

I had thinned out liquids for several weeks prior to this appointment and noticed that Olivia was VERY congested and her lungs sounded raspy to me.  Seeing Gwen wanted me to thin them even further I asked that a doctor please listen to her lungs just to make sure they were clear.   After initially telling me yes
the genius then told me that because Olivia was not there for a "medical" appointment, no doctor NOR nurse could listen to her.    Long story short, everyone knows I don't take NO for an answer.  And Dr. Rahbar DID listen to her lungs, and they were clear.     I was pretty shocked with the lack of help this "feeding team" was.    A trip to Boston really is no big deal these days for me, but Olivia hates going.  Do I blame her?  Not at all.  I try to limit her appointments to cut back on upsetting her.  This appointment not only wasted my time, it stressed out Olivia and I, and will be billing my insurance $596 for Gwen to sit and smile at me.  Maybe I should have been a speech pathologist.

So after all of this...what was the outcome?  The doctor feels that I am intelligent enough (YAY!) to make my own decision regarding Olivia. I can wait it out, or I can try to "force" her into swallowing thin liquids.  He seems to think practice will make perfect.  Although he did warn, "although it could lead to pneumonia".  So, I'm faced with a dilemma.  For the mean time, I honestly rather thicken Olivia's drinks than have her aspirate them.  Maybe I'm being conservative, but at the end of the day, Olivia is MY baby, not just another case file.      So for the next six months it's up to me what I want to do as far as Olivia's progress.  I'm just going to take each day at a time, but I'm not going to force her to do anything.    In six months we will revise the plan.  Frustrating, stressful and it makes me sad all at once.  Life sure is a challenge for some. No one said it would be easy, just that it would be worth the ride.