The Bandages..

Good Afternoon to all!  This is Guest Blogger Grandma updating everyone on Kylie.  She is having a great day and has received so many thoughtful gifts to occupy her time.  We just go from one activity to the next. Painting, Coloring, Watching TV, Games and GO FISH  a new favorite to name a few. Grandma is tired but happy that Kylie is happy and not in pain.

 Here is Kylie last night getting ready for bed.  We ran out of shirts that would fit over her head so we improvised with using one of Tricia's Shirts and tied it in the back.  It fit well and Kylie swirled around wearing it and thought it was funny.  We were supposed to get her bandages off last night but she outright refused and melted down with the thought.  So we put her to bed and devised a plan for the next day.

This morning Kylie woke up with a big smile and ready to rock and roll.  Tricia asked her if we could cut off her bandages and she told us she would.  So we helped her and see below.  Everything was done by Kylie herself!  We just had to help trim some tape where the hair was cut.  (Brian and Tricia wanted to take pictures of the bandages to show other families all the steps of the process and it isn't that frightening after all.  They want to be a family that can assist others as they go through the process)

 

Here she is after we cut off the side.

It Only Hurt when the tape got caught on hair

All off

 

Smiley Kylie although we still can't wash that hair for awhile.No more bandages only small tape over the stitches

The rest of the day was fantastic and Kylie continues to improve each day.  Small shaking at times and a slight fever but no complaints overall.  She does hold her neck very stiff and doesn't turn the neck to look at you only  her body.  A plus day for Grandma!

The Start of a New Journey...

This past Friday, after all approvals and clearance were achieved it was an all go to have Kylie’s cochlear implant surgery on her right ear. The surgery took place at Bascom Palmer, a part of the University of Miami Health System down in Miami.  We were scheduled to be admitted at 6AM. Given that children go first, it was good to know that she would be in the first if not second surgery of the day.

 

As much as the day seemed like it was going to be a stressful event, it turned out GREAT. Our cochlear teams from the University of Miami, who we have worked with from day one, were great in constantly keeping us updated. It had to be the biggest relief when Dr. Fred Telischi, the surgeon, called us in and said the surgery was a success with no issues!

Early morning risers at the hospital... (The Tiger was from her teachers Ms Grace and Ms McKinley and accompanied her throughout the day)

Here is the operating time table chart that we would keep an eye on. Kylie was in OR 10

Waiting to be called in to the OR. Kylie liked the additional bracelets besides her own

 

All done! And still a smiley Kylie!

 

After an exhausting day, we left around 4pm...this pose resembles several individuals in our family!

Glad to be back at home relaxing!

 

We will keep you updated. On Wednesday, we go back to see Dr. Telischi for our follow-up and in approximately 3-4 weeks they will be able to utilize the processor that will then allow her to hear all the sounds like you and I do!

Pre Op Complete

Good Evening to all!  I know a lot of you have been emailing and texting to find out all the details of the doctors visit and upcoming surgery.  I figured that I would do a blog post so I could capture all the details in one place.

The Pre-Op appointment started at 10am with a visit to see the surgeon.  We talked through all of the possible complications of the surgery and the steps of the surgery.  I would have to admit the complications are super scary and we had to sign our lives away on the consent forms.  I don't know about you but watching TV and listening to the commercials for new pharmaceutical drugs and the complication that may result of rectal bleeding is scary too.   (Don't believe me about the above pay attention to the commercial next time!)

The surgeon will take approximately a hour for the surgery once the anesthesia kicks in.  He will do a small insertion behind her ear, yes they will have to shave her hair around her ear a little bit but nothing drastic.  From there he will insert the electrode (the tail looking piece) through her cochlea.  You and I have hair follicles in our cochlea that captures the sounds.  Kylie's are damaged.  It is too hard to see in this picture but at the end of the electrode there is electrons that support Kylie with sound.  The other part which acts as part of the processor and has a magnet will be under her skin on her head and attaches to the external processor part (which will be applied in about a month).  As you can see this is the size of a nickel. 

 

The sutures that Kylie will receive will be dissolvable. Her head will be wrapped and she will have to wear the dressing for up to 48 hours.  The doctor indicated that she will experience some swelling of her head / ear area after the insertion as her body wants to fight this foreign matter.  They expect her to bounce back after a few days but can experience been dizzy and unstable for a little bit.  They would like her to stay out of school for about a weeks time. 

After a very thorough explanation from the surgeon offices we made our way over to the hospital to do our pre-op visit there.  At the hospital they walked us through the procedure in massive detail, walked through the day of surgery and we met with admission, nurses and the anesthesiologist. Of course they had to make sure our money was good too!  Love Insurance!

 Kylie was quite the trooper as she has had her blood pressure checked multiple times and was poked and prodded everywhere but she checks out as in great health and can proceed with surgery.  She of course in true Kylie style thanked every nurse, doctor and person we came across and said, "Have a Nice Day!"

Best case scenario she will just have to go through general anesthesia but they will be prepared for anything that she may require.  The Anesthesiologist was calling Kylie's Cardiologist  as we left to just review her heart condition and the anesthesia.  We left the hospital around 1:30. 

Everything seems to be set, we don't have a time frame for the surgery yet they will call us the night before.  Most likely 7 or 8am on Friday morning and they anticipate we won't leave until the afternoon as she has to recoup etc at the hospital.  I know I know yes day surgery and they are cutting into her head.  She may come home but I may still be in a straight jacket somewhere! 

We haven't really told her what is going on as I am not sure she will understand the complexity of it.  I think telling her closer to the surgery that the doctor is going to give her a new princess ear is the best that we can do.  Just saying doctor right now she gets a little nervous as she thinks she is going to get a shot or blood taken.  Less is more I believe in this scenario.  

Thank you again to all for your kind words, thoughts and prayers for our family we are so full of appreciation and love. Kylie's future is so bright she has to wear cochlear implants.     (I hope some of this made sense I am exhausted!)