Check up

Addy had her surgery follow up on Monday of this week.  The Dr said that so far her ear looks good.
Addy also got the all clear to be active again,  with the exception of jumping or heading a soccer ball. She was super excited to be able to run and be active again.  It came just in time as she started her indoor soccer season yesterday!
Her next check up will be on January 30th and at the check up she will have a hearing test and we will find out if the surgery was a success! 

Recovery day 2

Addy has had pain in her ear off and on today.  Addy really hates to take medicine.  She so far hasn't taken any but just said she might want to take some Advil because it's really bothering her. 
We went on a very small outing today to visit Aunt Nicole, Bella & Mariah. Then we went to let Addy pick out some videos and the video store and grabbed a pizza (Addy's been asking for pizza since surgery).
We are on our way home now to have an inside pizza picnic on the living room floor and watch a movie!

Recovery

Addy has been running a low grade fever since late this morning.  We are hoping that it is nothing but we are keeping a close eye on her for now. 

Good Morning

Addy slept pretty good last night.  She is still coughing some but does not sound nearly as bad as last night.  The anesthesiologist called us first thing this morning to see how Addy did through the night and how she felt this morning.  She said she had been very worried about Addy amd was glad to hear of her improvement. Addy had some blueberry  muffins for breakfast and is not feeling great this morning but wanted to play Legos for awhile. 

Headed home...

Addy had half of a popsicle and went for a little walk down the hallway. We are in the car now. Her throat is really bothering her,  she has a bad croup cough and breathing is a little off. So the anesthesiologist had to check her out a couple times before we could leave, then they called her surgeon .  They are thinking its just from the tube down her throat during surgery but are a little worried and gave us a number to call if anything changes. She is staving, sick to her stomach and a little crabby ...poor Addy.

Surgery is done

We are in the recovery room with Addy now. She is feeling dizzy and has a big raspy cough. She keeps saying can we go home now???

The doctor spoke with us before we came to see Addy. Surgery went great there was no re-growth of the cholestoma cysts this time!!! So the dr was able to do the reconstruction. The Dr put in a 5.5 mm titanium shaft with 1×3 mm plate on base of it. They removed a small piece of Addys cartilage to place over the top of the shaft so that the titanium would not irritate Addys ear drum. Then they filled everything with dissolvable packing. The titanium shaft is basically just sitting in there and needs to remain upright in order for this to work in restoring her hearing. It will take 2-3 months for skin to start covering the shaft which will ultimately hold it in place.  So now comes the tricky part to keep miss Addison still for 4-6 weeks so that the shaft will remain upright.

For now we are back in our room listening to the sweet sound of our snorring lil Addy.....

 

Surgery

In surgery

Addy is in surgery

Waiting and watching cartoons

Addy just had some relaxation meds because her last surgery she was really nervous. The Dr is running added of schedule so they may be taking her back early around 1.

Headed to the hospital

Addy had a little melt down this morning because she was starving....poor lil pumpkin. She could have clear liquids until 9:45 but that wasn't really cutting it. So mommy improvised and made a Gaterade snow cone,  this way she got to eat something with a spoon!! It made her happy for a little while. Then she took a nice warm shower, and we packed some things to bring along today.
Surgery is scheduled to start at 1:45.  The plan is to check for any cyst re growth and if there is no re growth the dr is going to reconstruct her ear wroth fake bones in hopes that Addy may regain sone hearing in her ear.  We will update more as the day progresses.

Resting at home

Addy slept most of the night and got up around 5 this morning! The momo's and uncle Wyatt came over for breakfast and to watch "Hotel Transylvania". She has been in a little pain today but otherwise doing good. Yesterday we asked her if she was in pain and she said yes so we wanted to give her medicine to help. But Addy refused and told us "don't tell the nurse I hurt, I'm not taking any medicine."

Brandy washed Addy's hair in the sink since her ear cannot get wet. Addy was trying to get her bandaid off her ear but it was on really good. Her solution. .. cut the bandaid in the middle and this way it won't pull on the part of her ear that was operated on! Then she pulled it off her self. A bath and clean clothes later, she is relaxing and beating Brandy and I at Shanghai rummy. 

Surgery didn't go exactly as planned but we will update the details later. 

Home

It's been a long day and we are finally  home. Addy is doing good, a little tired though. Time for some must needed rest.

Recovery

Addy is all done with surgery and is working on recovering by sleeping while Alvin & the Chipmunk's are on. We should be going home tonight. We'll update with surgery details later this evening.

Surgery

They just took Addy back into surgery. Brandy was able to go with her and said Addy was scared and doesn't want to do it. Poor little squeaks...

Addy's diagnosis.... What she has and how we found it.

Welcome to Miss Addy "Squeakers" blog. We would like to share our daughters journey of living with a Cholesteatoma Cyst.

What is a Cholesteatoma Cyst?
A cholesteatoma (ko-less’-tee-a-toe-ma) is rare, especially in children. Typically, it is a growth in the middle ear,  in just one ear but it is possible for it to affect both ears. This growth can be present behind the eardrum at birth or it can develop later, sometimes as a complication of middle ear infections. A cholesteatoma is not a tumor and is not cancer.
A cholesteatoma is made up of layers of skin tissue (epithelial) tissue. Just like an onion, it starts out small and grows by adding layer on top of layer. Each layer is made of skin tissue. The really serious issue is that the cyst can eat away at whatever it touches.  If a cholesteatoma is not treated, it can invade the tiny bones behind the eardrum (ossicles), dissolve part or all of the structures in the middle ear, and as a result, cause hearing loss. If it grows large it can even dissolve through the bone separating the middle ear space and the brain. Serious potential complications of cholesteatoma include hearing loss, brain abscess, dizziness, facial paralysis, meningitis, and spreading of the cyst into the brain.

Last spring (2015) Addison failed her hearing test at school so we received a note from the nurse to take her to have further evaluation. We started with her pediatrician who checked her hearing and concurred that Addison could not hear out of her right ear. He then referred us to have another hearing test with a specialist, again same results no hearing in her right ear. The next step was for Addy to see an ENT whose appointments were normally a couple months out, but she had a cancellation for the very next day so we took it. The ENT evaluated Addy and said she needed a tube in her ear. 
Surgery was scheduled at Swedish American Hospital for April 23,2015. We were of course nervous but not too bad because it was to be an easy procedure that Addy didn't even have to have an IV, they just use gas and it was only to take a few minutes to perform. The doctor came to talk to us shortly after and said that she did not place a tube in Addison's ear. She said that once the started they found a large tumor/cyst inside and did a biopsy. At that point I'm pretty sure Rich and I both stopped hearing the doctor, you just start to panic ...what is it? why? what can be done? biopsy... why is it cancer?? The doctor ordered a CT and referred us to see a specialist from UW children's. The CT was now complete and we had an appointment set to see a new doctor from UW. After 7 or 8 extremely long days the biopsy came back benign, phew what a relief!!
The doctor from UW told us that what Addy has is a large Cholesteatoma Right Ear cyst. She said that it would need to be removed soon as it had grown very large, was right near her brain and these cysts can actually cause brain abscesses.


Surgery #2 at UW family Children's Hospital was on May 11th the surgery took 3 or 4 hours. After surgery the doctor said that the cyst was very large and had both damaged and overtaken all of the bones inside of her ear so she had to remove everything. She said Addy would need to follow with an ENT for the rest of her life as these things can re-grow. There was also hope for reconstruction of her ear bones at some point to potentially help with her hearing.

Which brings us to the present: At Addy's last follow-up on January 4^th, the doctor saw some small cysts growing back. She said she could do a CT to check for more deeper inside but she needs to do surgery and have these removed anyway so she will look deeper once they are in surgery. The surgery plan is that if there are not too many or too big of cysts deeper inside that she will remove those and start the reconstruction of her hearing bones. Surgery is scheduled for January 15th at 2:00 & we are to arrive at 12:30. The surgery is scheduled to take about 2 hours and 45 minutes.