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. 

Heartbroken

On Tuesday, Olivia had her 4th swallow study. A lot of people ask what exactly that is.  The short version is, a test that involves Olivia drinking liquids with barium and being xrayed while doing so to see how the fluid passes through her espohogus.  The long version is: Swallow Study.  Now, I had every thought in my mind that Olivia was not going to pass this test.  She still coughs and chokes when she drinks liquids that she steals from her brother and sister.  I convinced myself she wouldn't pass but wouldn't really admit it to anyone because my grandmother always says "thoughts have wings, so keep your thoughts positive".  So off we went to Children's for the day....and what a day it was.

As soon as Olivia's name was called for the test she started to get tense.  Once inside the room she began to freak out.  The look of fear in her eyes was like nothing I've ever seen with her.  The last time she had one of these tests was January 2010  so I don't know how she remembers it.  Olivia decided she was not going to cooperate and sit for the exam, so they repositioned the whole machine so I could get in and hold her through it.   That's what Children's does.  Anything and everything to take care of the kids.    Olivia took 3 sips of a drink and the speech pathologist called it off saying the ominous "She aspirated". the scary part was, she didn't cough or choke.     Now like I said, I prepared myself for this.  I knew this was going to happen.  Yet, tears started to roll down my face, and I couldn't even wipe them because I had Olivia in my arms.  They attempted to see if she could swallow a slightly thicker liquid but Olivia decided she was all done.  And so was I.    They all told me how sorry they were that she failed yet another study, but all I really heard was a bunch of rambling.  

We had an appointment with Dr. Rahbar across the street from the hospital immediately after.  While walking over I attempted to call my husband to tell him what happened and I couldnt get the words out.  I had to text him because I just literally could not speak about it.    Once we got into the office to see the doctor I successfully checked us in, wrote a check for the copay, situated Olivia, and once I sat down I just started crying again.  I must have looked crazy, but I couldn't help it.  An elderly man who volunteers for the hospital came over to check on me.  Now I was definitely the crazy lady in the corner.  All the while, Olivia was dancing all around the waiting room.  Having no idea why I'm upset, because to her, nothing is wrong.  

Once we met with Dr. Rahbar and his team, he explained that sometimes the anatomy can be perfect but the coordination is not.  He says that he has only had to do a second repair a handful of times in his career.   he also said he trusts my judgement on Olivia.  Of course he had to scope her nose as he always does, and of course it couldn't just be a quick thing because two other residents had to see as well, and here I am holding her YET AGAIN while she gets tortured by these people in the white coats.  

Essentially, we are at yet another bump in the road.  Dr. Rahbar asked (as other doctors have) if we thought about a neurological consult because besides outgrowing this, a brain issue would be the only other cause for her aspiration.    Yet, because Olivia acts very much like a "normal" two year old, has an extensive vocabulary and can walk and run with ease, the chances of a brain issue are VERY slim.  With that being said, I'm going to hold off on the neuro consult and spare my baby of more strangers examining her.   

So, the new plan is for Olivia to see a speech language pathologist who specializes in feeding issues monthly at Children's.  Dr. Rahbar will also be there for any issues that may arise.   Dr. Rahbar and the feeding team seem confident that they can "train" Olivia to swallow properly and that it's just a matter of learning.  

I guess I had high hopes for the cleft repair to be the end all to Olivia's LONG journey.  After all the research I had done I was confident that it just had to work.  Dr. Rahbar,  and her four other specialists all emphasized that it may not be the cure all. That it may work, but where it may not. I guess I didn't really listen to the "it might not" because all I wanted to hear was the "it will."    My heart is broken that it didn't work.  May sound ridiculous because there are so many kids far sicker than Olivia in the world.  I do realize that, and I feel for them, I really do.   But there is something about watching your own child suffer, and be fearful, and be put through test after test after test only to not have the results you wanted or needed.    

I have to trust that everything will eventually be OK.  There is an undying passion to make Olivia better.   The same as if anyone of my children were sick.   I will go to the ends of the Earth to make her better....and if anyone is up for the challenge, it's her.