Hailey was suppose go through an approx 2hr 45min surgery. The doctor came out at around 1hr 45mins saying she was done :-) So, she handled the surgery and recovery well and we made it home about an hr after surgery. That is the best I can say for now. We will have a follow-up next Wed morning to ensure she is on the path to healing - then one a month later and then as needed. She has dissolvable stitches as well as dissolvable packing in her ear. The packing will last about a month and we will have an even better understanding of whether the hole remains, was healed, or made worse. It will be closer to 2-3 months to know the impact on her hearing. As most know, Hailey has balance issues due to the original brain tumor and she pretty much knows her limitations as well as how to adjust for this side effect. However, the ear surgery and extra packing has thrown her off for balance and makes her feel dizzy so she needs to readjust where she can, seek out more help if capable, and just be overall more cautious. She is usually a great advocate for herself. We need to make some adjustments at school to help with this and ill need to discuss it with her dance teacher on how to proceed. Since it will be a few months before we know how the hearing was impacted and where to go next and she is now dealing w/ hearing loss in both ears, she will start wearing a headset that all teachers will also use to communicate with her in class b As I mentioned earlier, this ear drum is the ear in front of her original, cancerous brain tumor at age 2. This section of her brain received the max radiation allowed to a human brain after she turned 3 (the youngest any person can receive brain radiation). I already had my concerns before surgery. In 2010, when they removed the 2nd, noncancerous brain tumor behind the opposite area (which had half the radiation amount), the surgeons dealt with several radiation damage issues to include not being able to properly replace that section of the skull upon completion of surgery. The result was using a titanium plate in place of that section of the skull. So, worry wort mom looks at that fact that - a tangerine size section of her brain was removed behind the ear getting surgery today as well as the ear having double the radiation when radiation at half that level damaged her skull on the other side, I tend to worry and I have trouble believing the hole will be repaired. I am not speaking negative upon my daughter and I pray for and want the best for my daughter. She has just dealt with so many medical issues - though she remains a happy adjusted healthy child - these issues hurt her momma bear. As her momma bear - though I am general positive and focus on the good outcomes (definetly speaking nothing less than that to her), I do get angry at all that she has to face at times as I want to take it all on my shoulders - protect her from it - Id bear the burden of all of it for her if I could and as a person-not a perfect one - a mother - I worry, I get mad, and I prepare for the worse just in case - if Im not prepared then who will be - and I just help her see the good and positive just in case the worse does happen so she can still be her happy, good, growing accepting of herself - if I didnt do this and was shocked w/ many of the negatives that have happened, I dont think she would be as accepting because we wouldnt have already have the good out of the bad already prepared to share with her :-) I say this because of the possibility of extreme radiation damage I already knew about - and the doctor takes the tissue to cover the hole from that same area of her body - so more likelihood of using radiation damaged tissue to fix a hole probably caused by radiation damage and he is so sure of damage himself (the doctor), he already knows he will add additional man-made material over all of it hoping to increase the odds of fixing the problem. I asked him after the surgery when can he let us know when & if it worked - his reply was at least a few months or more - radiation damaged tissue (if able to be corrected) also takes longer to heal. I asked could he give us any likelihood, probability, statistics, potential that he was able to repair it and the percentages. He refused and stated that he had absolutely no idea of the odds. He did seem concerned as he stated the ear drum had extreme radiation damage and the skin on the ear drum was extremely thin - some of the thinnest he has seen - he can not be sure he used enough to cover the hole. Even if he did, he can not be sure the skin used will remain healthy, or any way to know if it will shrink or cause more tairs. He can not even be sure the extra material he added would be adequate as he can not guarantee any results he attempted with her own skin first. With all that said, regardless of what the doc did or didnt do, the condition of Haileys skin as well as the man-made material or anything else related to it - regardless of being prepared for the worse... At the same time, I believe in miracles!!! Hailey is the very proof of miracles multiple times. She has hearing loss in the conversational tone in both ears...she deals with bullying; she deals with teachers unable or unwilling to properly follow her IEP plan, she deals with not being able to stay at the same pace as the rest of the students but not qualifying for special educational classes; she struggles daily to get school work done; she struggles each quarter/semester to get all worked turned in before grades are due with all help available to her while being overwhelmed and remaining respectfully to her teachers regardless of Their understanding; she struggles w/ students being rude w/ noise issues as they dont realize her inability to separate background noise from the foreground needed info as well as having ADD; she deals w: a sister always on the deans list; she deals with having to miss school for doctors appts; she deals with slow writing skills and processing skills despite ability to perform the work - she deals with so many issues and often feels overwhelmed from school and the educational systems & an inability to try something different from the norm to help her achieve in the ways she could excel. With all these things, she does not need to continue to have such major hearing loss at that range when the physical hearing aides hurt as they align on her body physically at the scar points of the two surgeries of her 2 brain tumors. She needs the ability to have some of the hearing issues fixed. I believe in miracles!! despite any likelihood or odds or what have you, Im believing in God for Haileys sake that this surgery did its job and I ask all of you to pray for the same thing please. Hailey - lets get you another miracle - my special, strong, loving child of God!!!
Posted on: Thu, 13 Nov 2014 01:13:24 +0000
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