Good Bye Riley (Children's Hospital)

The title is appropriate because we finally found out what has been causing Amaya's neck to become infected over and over and over and over. No that's not a typo. Her neck has had a small infected abscess about every 10 days since February. In fact it became so common that we didn't even get too concerned about it.

The neck infection procedure:
It would look great like it was healing up. A couple hours later we saw a little white spec about the size of a pen tip. A few more hours it was the size of a kernal of corn and then by the next day it had usually tripled or quadrupled in size and then sometime in that day we would have to "pop" it to allow the pus to come out. The last two times this has been horrible. The second to last time she threw her arms up so hard and unexpectedly that I bit my tongue which left a nice red mark for several days. Not a fun time for either of us.

Timeline:
June 2008 - Chad and I noticed a small pea-sized bump under the skin in Amaya's neck. We decided that we would talk to the doc next time we went.

November 2008 - On a Thursday we noticed that the bump under her skin had gotten noticeably bigger. By Friday evening we were really concerned since it seemed to have doubled. We had an appointment on Sat. morning. She started antibiotics right away. By Sunday afternoon it started turning red. It was more red on Monday and by Tuesday afternoon had started to get really "tight." On Wednesday it had started scabbing and we noticed the first signs of pus. Wednesday at 10pm she had her first surgery which left a gaping hole in her neck.

December 2008 - Infection returned again - another round of antibiotics

January 2009 - Second surgery

March 2009 - Infection returned again and again - antibiotics again

May 2009 - Infection returned again about every 10 days - no antibiotics

June 10, 2009 - YESTERDAY
We went to Riley for a scheduled surgery on her neck. This surgery was supposed to last about an hour and then we could come home again. (In and out in one day). We were in the waiting room and the nurse came to give us and update and from the look on her face it seemed like something had happened. She told us that Dr. Engum would come talk to us as soon as the surgery was done but it looked like they would have to continue to work on her.
As Dr. Engum was working he found that the trac that he had taken out in January had completely returned (not a good sign) and that it was connected to something up near her ear. This was not his specialty so he called in another surgeon for Ear Nose and Throat. At the time that he was talking to us the other Dr. was already removing Amaya's left tonsil to see if the Branchial cleft (pharyngeal arch) ended in her tonsil. Disclaimer: I really don't know if I have all the medical terminology right but this is what I remember. We waited for another 2 hours or so and then we were called down to another floor to talk with the other Dr.
He said that they didn't find the end of trac in her tonsil so they would have to do another surgery cutting at the front edge of her ear and up the back and then coming back down again. (An S shape) He explained that there were risks associated with this surgery. The facial nerve could be damaged. At worst she could lose some function in the left side of her face. At best the nerve was not near the trac and nothing would happen.

From that point she would be in surgery another 3 hours.

WOW - 3 hours! So long to wait to see your little girl. I was never worried about the surgery but the facial nerve thing did worry me a little bit. I was sitting there and I realized that I really did have peace about the surgery and to me it didn't matter how long it took. I wanted them to be thorough and I just wanted this whole ordeal to be done. It's been almost 7 months to date from the first surgery to this one.
We waited and then waited some more and then they ended up being done sooner than they expected.

This is a whole lot of info so I will update more later. It's been a looooong two days for everyone involved. The important thing is that this evening Amaya finally gave us a full real smile something she hadn't done since yesterday morning.

Here are some links to some older posts concerning this subject it starts from the oldest to the most recent. All of these posts were sometime in Nov. and Dec. 2008.
Our Recent Journey
Sunday Updates
More Updates
Our Riley Appointment
Amaya Updates