Kamdyn ENT update

This is probably a little more detailed than most people (other than our family) will care to read.  So it that's the case, scroll all the way to the bottom for the "bottom line" after surgery.

Before surgery:

The nurse who checked her in fell completely in love with Kamdyn.  Every chance she got, she came over and played with her, talked to her, rubbed her back.


Kamdyn was having tubes placed, and the ENT was also going to examine her airway with a scope to check for the abnormality that they saw on her x-ray.  I knew that it was going to take a little longer, and I feared that her sensitive airway, along with the abnormality would cause her to have complications.  I've been through tubes twice with Austin, so I know that normally this procedure takes all of 5 minutes.  It takes longer in recovery than the actual procedure.  Just as I was starting to panic at how long it was taking, the ENT came in.  I could not have been happier to see her.

As we were walking down the hallway, we saw a nurse holding Kamdyn as she screamed.  I wanted to run down that hallway to get to her, but I refrained.  The second the nurse placed her in my arms, and she cuddled into her usual spot with her thumb in her mouth, she was quiet.  I held her for a few minutes and rocked her in a rocking chair:
 


She was resting like that, when all of a sudden, she started gasping.  It sounded like her airway was closing up.  I immediately called a nurse for help, but as soon as they took her and held her up on their shoulder, she was breathing better and screaming.  She continued to scream.  They moved us to a new room, and she kept screaming.



She calmed down for a second to take this picture, but she was clearly in pain.  Her cry sounded raspy, and all of the crying was making her breathing sound off too.  She had one other episode of gasping.  I was starting to really worry about her.  Thankfully, the nurse that we had pre-op, the one that loved her, said that she knew it wasn't like her to be so upset, since she had seen how happy she was before.  She worked on getting her some pain meds right away.  She had a Tylenol suppository in the OR, but it just wasn't cutting it.  They sent morphine, and our nurse said she was going to cut the dose in half.  We knew she needed to calm down, and the only way that was going to happen was for her to sleep.  Just a few minutes after she had the medication, she was calming down, and then she fell asleep.  She slept for a long time, while I held her.  Eventually I had to pee, and when I stood up to give her to Brad, she woke up.



When she woke up, she wanted graham crackers and juice, and she was feeling much better.  We ended up being there for about 5 hours when it was all said done, and after a little scare in the beginning, everything turned out fine.  Kamdyn fell asleep on the way home in the car, and she took a 5 hour nap. 

We were happy to have our baby girl home, along with a new friend that the hospital sent home:


Brad calls her big head, yarn head baby.

She was up for a couple of hours and went back to sleep for the night, and slept the whole night.  I think it's safe to say she was worn out.

Today, she was completely back to herself:



Smiling, swinging and playing in the sand box at the playground, and back up to all of her usual tricks.



As far as the surgery itself, her tubes were successfully placed, despite her tiny ear canals.  She will have a follow-up hearing test in a couple of weeks, and we are hoping that her hearing will be back to normal.  The ENT found that she does not have thickened tissue in her airway as they thought, but she does have a piece of tissue that is partially blocking her airway.  The next step will be a sleep study to test for apnea.  That will tell us whether or not the blockage needs to be removed.

Kamdyn is getting tubes

Some of you know from Facebook that Kamdyn was scheduled for tubes at her last ENT appointment on April 30.  After that appointment, we went over to Radiology and Kamdyn had a neck x-ray to check for atlanto-axial instability that people with Down syndrome can have in their c-spine.  It's been about 2 weeks since she had that x-ray, and I hadn't heard anything.  I figured no news was good news, but I planned on following up with it eventually.

Today, Kamdyn had a pre-op appointment with the anesthesiology peeps.  They weren't kidding when they said the appointment takes 2 hours.  For real.  I answered a ton of questions.  Medicines.  Dosage, which I never know.  I have to bring her meds along on surgery day.  Family history.  All the usual.  Since we were talking about her last ENT appointment, I asked about the results from her neck x-ray.  I knew when she didn't answer right away, that there was something.  So she tells me that they found a thickened area in the airway.  It's hard to remember now, but I believe her words were that when Kamdyn flexes her neck forward, her airway closes.  I couldn't get many details, because, first of all, I was a little caught off guard, but it also isn't their department, and I needed to talk to the ENT. 

On the way home, I felt so terrible and sick over the whole thing.  The thought of handing Kamdyn over for this procedure, suddenly brought up so many dormant emotions that I had 2 years ago, when we were preparing to hand Kamdyn over for open heart surgery.  Thinking back today, I realized how numb I was during those days 2 years ago.  Looking back now, I can say that I was literally in survival mode.  Thankfully, Kamdyn never did need that open heart surgery, but I was surprised by my reaction today to all of those old emotions. 

Then, I found myself being really upset, because I can't understand why nobody thought to let us know about this new found abnormality in her airway.  The ENT's office eventually called back and the doctor said that she saw the report and noticed the abnormality, but she didn't think it was a problem.  The whole thing still irritates me, because I feel like my trust in that doctor is a little scarred now.  I would rather be told, even if it's not a big deal.  It's still an abnormality.  Plus, I pretty much received two opposite reports, one concerning, the other no biggie.  I will be doing some of my own research and talking with the doctor more about this.

In the meantime, Kamdyn's tubes procedure is still scheduled for May 30.  She failed her hearing test at her April 30 appointment, and I believe that her hearing has been compromised for quite some time now.  I wasn't given any promises that her hearing will return to normal, although they are hopeful.  Of course, I'm a little worried about that, as well.  For the procedure, the anesthesiologist said that they always prefer not to insert an IV or breathing tube, but given Kamdyn's respiratory history and air way abnormality, it is a possibility.  The ENT also said that while Kamdyn is under, she will examine her airway better and find out more about the airway abnormality.

In the grand scheme of things, tubes is seriously no big deal.  We've done it twice with Austin.  This past time, he walked off with the nurse, dragging his blankie behind him, as we waved.  But I have no doubts that handing Kamdyn over will be a whole different story.  Partly from the extra concerns, and partly, because this will be a reminder of Kamdyn's early days, when I felt so uncertain about her health.  But today, I can say that I am thankful for a happy, healthy little girl.

And some pictures from our Mommy/Daughter anesthesiologist appointment day:

Hello bed head in the car:

Hello falling back to sleep 10 minutes before we arrive, after an hour drive:

Hello hospital:



Hello anesthesia office:

You seriously need to finish up that Children's Hospital you're working on, because this room was boring.

Hello Hershey Kiss shaped light posts:

Hello roller coaster that my husband is dying to ride:

Hello Chocolate World Tour:

Hello Mommy and me time:

Hello rows and rows of candy:

Hello coffee:

Hello happy girl eating a Reece's peanut butter chip cookie:



Hello chocolate syrup:

It's really a bank, but I don't think she knew.











"Mmmm, how do I get this thing up to my mouth?"