Friday, August 3, 2012

{Dr., Dr., Dr., Dr., Dr.}

My ode to the movie Spies Like Us.  This is what my life has been like this week.


It all started with a visit back to the hospital so Finn could have his hearing screened which should have taken place when he was born, but he never got tested as their machines were down.  After a mistake made by the nurse of writing down the wrong date, he was finally tested Monday (7 weeks later).  It took about 10 minutes and we had confirmation of failure in both ears.

Before getting screened, I knew he wasn't hearing out of his left ear, but I knew thought he could hear me out of his right ear.  When I saw that he failed both ears, my eyes welled up with tears.  The tech said that we could do the test again, but I told her no.  We went home and made an appointment with an Ear, Nose, & Throat Doctor. 

That same day after getting his hearing screened we also saw the Doctor of Cardiology who did an EKG.  The results showed that the right side of his heart was enlarged due to either volume of blood or pressure.  It also showed that the hole in his heart was about 3mm.  We discussed that his waking up while sleeping could have something to due with his lungs, which could be linked to his enlarged heart, and so we have an appointment scheduled with a sleep doctor for a sleep evaluation and then a sleep test to see if he has sleep apnea.  We also have an appointment scheduled with a pulmonologist to check out his lungs. 

Two days later we got in to see the ENT Doctor.  He checked for fluid in his ears, which is what I thought it was and hoping it was, as alot of children with down syndrome have fluid in their tiny ear canals blocking any vibration.  Usually putting tubes in the ears fixes the problem and hearing resumes.  The Doctor told us that he had fluid in his right ear, but no fluid in his left ear.  I immediately knew what this meant.  It meant that since there was no fluid in his left ear that there is some degree of hearing loss in that ear.  To what extent, we don't know yet.  The fluid in his right ear has created some hearing loss as well.  I do know that he can hear somewhat out of his right ear, because when Kurt plays his guitar he kind of perks up.  He can also hear when the kids yell.  So we have him on antibiotics to clear the fluid in his ear, then we'll go back and make sure it cleared, then we'll put tubes in both ears, then we'll go and have his hearing tested to see the if there is hearing loss and to what degree.  It's a process.  It is sad to know that my little boy probably hasn't been hearing me talk to him for the last 7 weeks. 

This morning we are on our way to see the Doctor of Pulmonology. 

It seems like I've been on the phone non stop for 3 days to make sure that all the doctors are in our network and the tests they are doing are covered through our insurance.  Although it's a pain, I am grateful that our deductible has been met and everything that is and will be taking place over the next several months will be paid for.  I am also grateful for technology.  It is so cool what technology can do.  It's actually pretty amazing. 

We are on our way to getting our little guy the healthiest he can be.  He continues to be a sweetheart, and is a great baby.  He is getting big.  He is up to 11 pounds and just started requesting 6 oz. of milk instead of five.  Here he is sleeping peacefully, which will be interrupted by a quick shortness of breath, and then no breath, and then catching his breath, and then back to sleeping peacefully.  I love how he sleeps with his arms up by his head.  He's not one to have have them bound and swaddled.

8 comments:

Meridee said...

This news breaks my heart & brings tears to my eyes. I'm so glad you are fighting for this sweet guy. That picture of Finn is precious!

Anonymous said...

hi Kanani. He can hear you, he's just listening for more love.
Love you and him
Dad

The Clark said...

K, Fin is unbelievably cute. All your kids are...you guys have a great recipe, but when ever I see pics of Finn I feel a deep love and reverence for him. I agree with your dad. Finn hears you. I mean babies this age don't speak English yet anyway, so none of your babies understood your words at this age, but unquestionably he feels your energy and knows of your love and UNDERSTANDS. I wish I could squeeze him and kiss his chubby cheeks!! 

The Clark said...

Oops Finn, not Fin. <3

The Clark said...

K, Fin is unbelievably cute. All your kids are...you guys have a great recipe, but when ever I see pics of Finn I feel a deep love and reverence for him. I agree with your dad. Finn hears you. I mean babies this age don't speak English yet anyway, so none of your babies understood your words at this age, but unquestionably he feels your energy and knows of your love and UNDERSTANDS. I wish I could squeeze him and kiss his chubby cheeks!! 

Taylor's said...

I teared up for you! I will tell you this is just a speed bump in a very glorious road!

My little Kate is a living miracle - truly!

Your Finn is a miracle as well!

As always, I will keep you in our prayers and when I visit the temple this week I will be sure to put down your families names!

He is handsome as very and you can definitely tell that little man is very well loved!

Alicia said...

Gloria slept with her arms up like that. Even when we swaddled her. Brandon nicknamed her Houdini because she could get out of the tightest swaddle. That's a beautiful picture of Finn. He is so cute. I am sorry he gets short of breath when he sleeps, poor guy. I would sure love to hold him.

Alicia said...

We'll keep his name in the temple that he will be able to hear!

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