Hi, so sorry for not updating things sooner...I meant to and just didn't have the time since we got back from Kelowna BC, going right back to work and preparing to be back here in Edmonton for her next procedure a week later. Life's been a tad hectic.... BUT at least Phoenix's trip to Kelowna was amazing for her! I am so happy she managed to experience all that she did and learn all that she did while out there! I even learned so much about her myself...and to learn to stop underestimating her :) She was given the privilege of being an Honorary CTE under canada's top dog trainer Brad Pattison! He surprised her with the honorary title and she was given the hat and t-shirt to prove it ;) She loved being in Kelowna with all the dogs and all the amazing people and dog trainers she met there! Everyone was so incredibly welcoming and treated her as an equal among them :) It was an experience she will treasure forever! She may not of been able to join all the activities due to her health and how much she tired out doing what little she did...it's amazing what 6 weeks (well months really, a few days here and there doesn't much count) not going to school does to the body in weakening it! But what she did get to join in was so much fun for her and also very educational and eye opening, for both of us! Seeing my 11 year old get out of a house she's never been in thru solid white smoke in a fire simulation safety course they did, or handling a highly agitated doberman along with other CTE's and helping it gain confidence and it loving her at the end with licks and cuddles in such a calm manner, to seeing her sit 8 dogs one after the other into a sit stay group altogether! The conference and training taught us about helping the dogs gain confidence in themselves....but I think it helped Feeny do the same, and me to see that and acknowledge her abilities :) We owe so much to Sherry Turuk and family for making this all possible for Feeny to attend the conference, as well as Brad Pattison for allowing Feeny to attend the close knit family group of BPCTE's from all over canada, and giving her such an incredible privilege of having the Honorary CTE title as a dog trainer :)
And now we are currently back in Edmonton...got up at 5am to get ready and hit the road to make it for her bloodworks, and 2 hour appointment with her transplant team. Tomorrow they will be doing the next procedure. We were told last time at least one more, possible 2 more times of this...but today they said they may remove the drain! I dare not get too excited though...every time one doctor says one thing, the other says the opposite! I'll just keep my fingers crossed when she goes under that when she comes back out she's drain free for the first time since February!
Unfortunately with that potentially good news....it was preceded with bad. The first person we saw was a kidney specialist. I was told Phoenix's kidneys are in Stage 2 kidney failure. I was shocked....I didn't think it would happen so soon that her meds to keep her alive would start their damage to her kidneys now. Before they would even do the transplant...after we recieved the call that a liver was available and were flown up for it...I had to sign a waiver acknowledging that her anti-rejection medications cause kidney failure and cancer. I knew with time the medications would take their toll and she'd face other organ failures....I just didn't know that the deterioration would happen so soon, especially with how diligent I try to be with keeping her fluid intake up to keep her kidney's flushed well to prevent the meds sitting in them and destroying them.... The only thing they could tell me is that we'll monitor the kidneys and increase her water intake per day to 3 liters a day in the hopes to slow the deterioration progress some. There isn't much in her life we can change...her medications are needed, can't even be an hour late without risking the chance of her body recognizing the new liver as foreign and attacking it causing permanent damage each time...if they can get the rejection under control that is. Sometimes they can't and they loose the organ...or worse while waiting for another one to become available. The best we can hope for is slowing the progression of the damage or getting it stable. They don't know why she is already having these issues considering her fluid intake is more then adequate in what they want a transplant patient to be drinking...and her medication levels have stayed good, no high peaks to have caused the issues suddenly like this. I guess with so much being new though in the transplant world, only doing these for 30 or so years...and it being Feeny...that many things will never have an answer or reason to why it's happening to her.
They also discovered her sugar levels are really low...her medications can cause diabetes....but not usually low blood sugar...so they're unsure what's going on there too. So they'll be doing more testing looking into that as well. I feel defeated and frustrated that she can't seem to catch a break...that none of this can be easy on her and just let her be...let her live life a little bit like a normal child....
I'm so incredibly thankful at the same time that she has experienced all she has so far in this past year and a half though! She has truly been blessed by so many in helping make sure she could complete many things off her life list, and live life with incredible memories to treasure through the good times and bad that she's endured. She has LIVED and EXPERIENCED so much in such a short period of time <3 She is a true fighter, and I hope with medical technology advancing everyday and her spirit to fight and love of life, we'll overcome these obstacles as well <3
And now we are currently back in Edmonton...got up at 5am to get ready and hit the road to make it for her bloodworks, and 2 hour appointment with her transplant team. Tomorrow they will be doing the next procedure. We were told last time at least one more, possible 2 more times of this...but today they said they may remove the drain! I dare not get too excited though...every time one doctor says one thing, the other says the opposite! I'll just keep my fingers crossed when she goes under that when she comes back out she's drain free for the first time since February!
Unfortunately with that potentially good news....it was preceded with bad. The first person we saw was a kidney specialist. I was told Phoenix's kidneys are in Stage 2 kidney failure. I was shocked....I didn't think it would happen so soon that her meds to keep her alive would start their damage to her kidneys now. Before they would even do the transplant...after we recieved the call that a liver was available and were flown up for it...I had to sign a waiver acknowledging that her anti-rejection medications cause kidney failure and cancer. I knew with time the medications would take their toll and she'd face other organ failures....I just didn't know that the deterioration would happen so soon, especially with how diligent I try to be with keeping her fluid intake up to keep her kidney's flushed well to prevent the meds sitting in them and destroying them.... The only thing they could tell me is that we'll monitor the kidneys and increase her water intake per day to 3 liters a day in the hopes to slow the deterioration progress some. There isn't much in her life we can change...her medications are needed, can't even be an hour late without risking the chance of her body recognizing the new liver as foreign and attacking it causing permanent damage each time...if they can get the rejection under control that is. Sometimes they can't and they loose the organ...or worse while waiting for another one to become available. The best we can hope for is slowing the progression of the damage or getting it stable. They don't know why she is already having these issues considering her fluid intake is more then adequate in what they want a transplant patient to be drinking...and her medication levels have stayed good, no high peaks to have caused the issues suddenly like this. I guess with so much being new though in the transplant world, only doing these for 30 or so years...and it being Feeny...that many things will never have an answer or reason to why it's happening to her.
They also discovered her sugar levels are really low...her medications can cause diabetes....but not usually low blood sugar...so they're unsure what's going on there too. So they'll be doing more testing looking into that as well. I feel defeated and frustrated that she can't seem to catch a break...that none of this can be easy on her and just let her be...let her live life a little bit like a normal child....
I'm so incredibly thankful at the same time that she has experienced all she has so far in this past year and a half though! She has truly been blessed by so many in helping make sure she could complete many things off her life list, and live life with incredible memories to treasure through the good times and bad that she's endured. She has LIVED and EXPERIENCED so much in such a short period of time <3 She is a true fighter, and I hope with medical technology advancing everyday and her spirit to fight and love of life, we'll overcome these obstacles as well <3