Sorry for the delay, for weeks I was unable to update and sign in to the site, tried again today and it FINALLY let me!! So here are the last updates that have occurred...
(AUGUST 14 AND 15:
Phoenix needed to do a follow up with her blood pressure issues and kidney damage issues, so we followed up with a dr in Calgary children’s that we had seen before for her blood pressure issues, and when she had problems with UTI’s for a couple years after transplant. We drove up on the Wednesday to get her hooked up to a 24hr blood pressure machine and to get her bloodworks done up there. Then we drove back home instead of staying there overnight. Drove up again Thursday morning to have her machine data read and check bloodworks test results. Dr says her Blood pressure looks good though, she had a least 70% acceptable level readings, so no issues while healthy, we'll continue to monitor, and do other tests to determine more into her kidney functions.
AUGUST 20:
Saw the dentist again to do her teeth cleaning and full x-rays. Dr. was still not optimistic on saving the front 2 teeth...they are discoloring even more since the last she saw her a couple weeks ago. X-rays don't show much, but said she may still have other teeth at risk and that time will only tell. And the big discovery which came as no surprise to me with the complaints Feeny was having-her Bite IS off. Even from their previous records of her crossover bite, it’s off more than before. They tested her jaw and teeth alignment and as Feeny said the teeth catch on the sharp edges of her molars and she has to slide her jaw to adjust before she can fully clamp down. She also has limited mobility in moving her jaw side to side. Tenderness in the TMJ joints is still prominent and pain in her one ear where she still has hearing loss is tender to touch or move her jaw too much with. And she has also been grinding her teeth at nights because the jaw joint is off. Plastic surgery may not be able to help they said. It's also beyond basic dentistry...they may need to have her see an orthodontist. I of course have absolutely no coverage to see one never mind do anything.
AUGUST 26:
We had a 4:30am start to get up and hit the road for Calgary for Feeny's first early appointment. Saw the ear specialist to see why she is still having some muffled hearing issues and pain in her ear, he managed to get out a huge blood clot from in her ear....was kinda neat to see on the tv from the camera. He doesn't think there should be any reason why she is having balance issues still (can't close eyes and stand without falling, uses chair in a shower) or the muffled hearing issue still if her hearing tests came back fairly fine. He did say there may be a bone out of place pushing in the ear which is why she's having pain in the upper jaw joint and in the ear to touch even with a finger or Q-tip. But it's not his area of expertise. So hopefully on Thursday when we see the plastic surgeon we'll know more.
She saw Neuroscience in the afternoon to deal with her inserts in her shoes. They're happy with how it's balancing her out with the leg length difference. They were also happy with her physio and the results she's been getting with her kneecap popping out issue. So that was a good appointment. Unfortunately her back is unexplainable still, but she'll see a specialist in a month or so about it finally. She's been having daily hip and back pain and can barely walk when she wakes up in the morning. Had her GI team nurse call as well, her tacrolimus levels are too low...so need to retest her blood in the am to see what they say, if still bad then we'll need to up her dosage.
AUGUST 29:
Feeny saw the plastic surgeon today. He said it could take a year to fully heal from her injuries so he isn't surprised she is experiencing pain, muffled hearing or balance issues. Said that jaw injuries tend to affect the ears and hopefully in time her body will adjust around it. In regards to her bite being off he said orthodontics and braces are our options only (no coverage tho), said the extent of the trauma she suffered often never fully heals properly and is never 100% again after. She needs a nightguard as well to prevent her damaging her teeth with her grinding at night...that's complicated as she is growing and can't have something form fitting like that on her teeth forcing them in a mold interfering with the growing and spacing of mouth and teeth. It's also not covered. If she is still having issues with pain in the jaw and ear in 6 months they'll check her out again... until then it'll be a wait and see scenario.
My heart hurts to know the amount of pain she will endure for life from this…possible disfigurement as surgery is always too risky to do with her to fix her jaw alignment if the growth plates are affected, as well as possible loss of teeth. Her emotional and mental trauma over this worries me too…she has had nightmares of this incident reoccurring and is fearful of returning to the school and encountering the same thing again.
I’ve returned to work…but at cut hours of 99/month…with more out of pocket fuel cost expenses. I’ll not earn my benefits back either being part time. I was denied EI for those two months down caring for Feeny, even under the new coding for parents caring for critically ill or injured children. They still are like the compassionate care leave criteria’s, and must be life threatening and faced death to qualify. The surgeon didn’t consider it so from his perspective, despite her risks as a post-transplant patient for surgery being immunocomprommised and high risk of deadly infection particularly with her recent sepsis history and even stopped breathing during the one surgery.
This “accident” has cost us so much….and will continue to do so for life for feeny personally… it’s ruined so much of our lives altogether…and not just for her medically, and me work wise and financially now and in the future- but in personal areas too- I had made plans, saved and looked so forward to attending a wedding in the United states for our friends who were counting on us attending as so few could do so for their big day, it was to be a first time vacation for myself and finally meet my biological father’s (who died when I was 7) side of the family there…unfortunately that of course due to finances had to be cancelled… we miss our friends once in a lifetime wedding and any chance of meeting my family. Part of me feels so devastated and more defeated by these injuries and all its affected more so then her liver issues have. Maybe because we were finally free and stable after so long of her medical liver stuff after all those months of fighting so hard and finally relaxing those couples weeks and feeling optimistic- and this happened to her and ruined so much and crushed so many plans and hopes and literally destroyed my job etc... destroying future prospects and hopes and plans and future abilities financially.
I'm going to really try and focus on the positives though from here on out...she's alive, and we've overcome hopefully the worst of it all. Everything else we can figure out and find a way to make work hopefully...so long as she is happy and doing well as possible after this nightmare is all I can ask for, it could have been worse- she's still here to hold and love and help build a future for <3
(AUGUST 14 AND 15:
Phoenix needed to do a follow up with her blood pressure issues and kidney damage issues, so we followed up with a dr in Calgary children’s that we had seen before for her blood pressure issues, and when she had problems with UTI’s for a couple years after transplant. We drove up on the Wednesday to get her hooked up to a 24hr blood pressure machine and to get her bloodworks done up there. Then we drove back home instead of staying there overnight. Drove up again Thursday morning to have her machine data read and check bloodworks test results. Dr says her Blood pressure looks good though, she had a least 70% acceptable level readings, so no issues while healthy, we'll continue to monitor, and do other tests to determine more into her kidney functions.
AUGUST 20:
Saw the dentist again to do her teeth cleaning and full x-rays. Dr. was still not optimistic on saving the front 2 teeth...they are discoloring even more since the last she saw her a couple weeks ago. X-rays don't show much, but said she may still have other teeth at risk and that time will only tell. And the big discovery which came as no surprise to me with the complaints Feeny was having-her Bite IS off. Even from their previous records of her crossover bite, it’s off more than before. They tested her jaw and teeth alignment and as Feeny said the teeth catch on the sharp edges of her molars and she has to slide her jaw to adjust before she can fully clamp down. She also has limited mobility in moving her jaw side to side. Tenderness in the TMJ joints is still prominent and pain in her one ear where she still has hearing loss is tender to touch or move her jaw too much with. And she has also been grinding her teeth at nights because the jaw joint is off. Plastic surgery may not be able to help they said. It's also beyond basic dentistry...they may need to have her see an orthodontist. I of course have absolutely no coverage to see one never mind do anything.
AUGUST 26:
We had a 4:30am start to get up and hit the road for Calgary for Feeny's first early appointment. Saw the ear specialist to see why she is still having some muffled hearing issues and pain in her ear, he managed to get out a huge blood clot from in her ear....was kinda neat to see on the tv from the camera. He doesn't think there should be any reason why she is having balance issues still (can't close eyes and stand without falling, uses chair in a shower) or the muffled hearing issue still if her hearing tests came back fairly fine. He did say there may be a bone out of place pushing in the ear which is why she's having pain in the upper jaw joint and in the ear to touch even with a finger or Q-tip. But it's not his area of expertise. So hopefully on Thursday when we see the plastic surgeon we'll know more.
She saw Neuroscience in the afternoon to deal with her inserts in her shoes. They're happy with how it's balancing her out with the leg length difference. They were also happy with her physio and the results she's been getting with her kneecap popping out issue. So that was a good appointment. Unfortunately her back is unexplainable still, but she'll see a specialist in a month or so about it finally. She's been having daily hip and back pain and can barely walk when she wakes up in the morning. Had her GI team nurse call as well, her tacrolimus levels are too low...so need to retest her blood in the am to see what they say, if still bad then we'll need to up her dosage.
AUGUST 29:
Feeny saw the plastic surgeon today. He said it could take a year to fully heal from her injuries so he isn't surprised she is experiencing pain, muffled hearing or balance issues. Said that jaw injuries tend to affect the ears and hopefully in time her body will adjust around it. In regards to her bite being off he said orthodontics and braces are our options only (no coverage tho), said the extent of the trauma she suffered often never fully heals properly and is never 100% again after. She needs a nightguard as well to prevent her damaging her teeth with her grinding at night...that's complicated as she is growing and can't have something form fitting like that on her teeth forcing them in a mold interfering with the growing and spacing of mouth and teeth. It's also not covered. If she is still having issues with pain in the jaw and ear in 6 months they'll check her out again... until then it'll be a wait and see scenario.
My heart hurts to know the amount of pain she will endure for life from this…possible disfigurement as surgery is always too risky to do with her to fix her jaw alignment if the growth plates are affected, as well as possible loss of teeth. Her emotional and mental trauma over this worries me too…she has had nightmares of this incident reoccurring and is fearful of returning to the school and encountering the same thing again.
I’ve returned to work…but at cut hours of 99/month…with more out of pocket fuel cost expenses. I’ll not earn my benefits back either being part time. I was denied EI for those two months down caring for Feeny, even under the new coding for parents caring for critically ill or injured children. They still are like the compassionate care leave criteria’s, and must be life threatening and faced death to qualify. The surgeon didn’t consider it so from his perspective, despite her risks as a post-transplant patient for surgery being immunocomprommised and high risk of deadly infection particularly with her recent sepsis history and even stopped breathing during the one surgery.
This “accident” has cost us so much….and will continue to do so for life for feeny personally… it’s ruined so much of our lives altogether…and not just for her medically, and me work wise and financially now and in the future- but in personal areas too- I had made plans, saved and looked so forward to attending a wedding in the United states for our friends who were counting on us attending as so few could do so for their big day, it was to be a first time vacation for myself and finally meet my biological father’s (who died when I was 7) side of the family there…unfortunately that of course due to finances had to be cancelled… we miss our friends once in a lifetime wedding and any chance of meeting my family. Part of me feels so devastated and more defeated by these injuries and all its affected more so then her liver issues have. Maybe because we were finally free and stable after so long of her medical liver stuff after all those months of fighting so hard and finally relaxing those couples weeks and feeling optimistic- and this happened to her and ruined so much and crushed so many plans and hopes and literally destroyed my job etc... destroying future prospects and hopes and plans and future abilities financially.
I'm going to really try and focus on the positives though from here on out...she's alive, and we've overcome hopefully the worst of it all. Everything else we can figure out and find a way to make work hopefully...so long as she is happy and doing well as possible after this nightmare is all I can ask for, it could have been worse- she's still here to hold and love and help build a future for <3