Shortly before 3:00 today (21) I received a call from the school saying Phoenix had a fall….a very bad fall while walking back with her class from the theatre….when I asked how bad, I was told there was a tooth missing and blood coming from her ear…she had tripped on the sidewalk, and an ambulance was there and they were loading her onto a stretcher… I immediately as I was in my car parked over in southshore area from work, said I’d meet them at the hospital and hung up as I threw my car into drive and tore out of there to the hospital. I then waited in panic assuming her fall with those sounding injuries meant she went into the street and was hit. About 10 min later she was brought in by stretcher from the ambulance….she looked as if she had been hit by a vehicle…the immense swelling about her head, especially ears and jaw area and all the blood from inside her ear and face was alarming! As well as the missing front adult tooth that had come out, fully…root and all. She was in so much pain… The injuries are traumatic, devastating, potentially life altering, and even life threatening if she takes a turn for the worse, develops infection, brain starts swelling majorly etc… she is very high risk given her already pre-existing conditions. This will be a long road to recovery if she fully recovers and remains stable from now. They did x-rays to rule out fractures or spinal injuries in her back and neck. This was excruciating as she couldn’t handle the neck brace touching her face and neck and jaw and someone had to maneuver to hold it away so they could move her arms and hands out of the way while x-raying. They determined she had no such injuries thru just a dr reading the results. No radiologist. He determined she wouldn’t need a ct but I was pushing for one. I saw severe head trauma, her pain, where everything… I knew. The amount of blood they first thought was coming from a cut in her ear…after 2 hrs of my constant asking and worrying about it they cleaned it out to tend to the cut and all the other injuries on her, she was covered in blood and it was hard to tell what came from where with the constant bleeding she was doing that whole time. But in doing so they discovered as I was saying, that there was no cut. The bleeding was coming from in her head the whole time. A CT was immediately done, a radiologist contacted to read it. In those 2 hours before tho, the amazing Dentist Dr Wilson came to our rescue and made a trip the drs said was impossible. We have no emergency dentist, and they don’t do teeth in the ER. Dr. Wilson flew in asap to our aid and inserted the tooth and wired it in with glue to her other teeth. She was so incredibly brave and strong thru all this…we had yet to discover the true extent of her injuries, the pain she was and is in…incredible amounts and she endured more as asked. Thankfully a nurse remembered hearing about milk to put a tooth into, had preserved and helped save her tooth till he was contacted by my mom and came to our rescue! It’s not a guarantee it’ll take, but she has a good chance. The risk of infection is very high for her, so we’re hoping we can keep her safe and healthy. Once again her swelling of the face…injuries…pain…was horrifying… for us to see…nevermind her to experience. Once rushed into CT 3 hrs after the injury, the results came back with the true damage. She has fractures in her sinus, cheekbone and jaw areas. Her chin hit the ground, cut it needing 4 stitches (which freezing didn’t take and she felt those fully too even the threading going thru!) and somehow popped out her front tooth, and fractured her face in multiple areas, those parts of her face never contacted the ground….in fact her glasses are in perfect shape still. The incredible amount of force and impact caused the fractures throughout her face from her chin up. Which is where the internal bleeding out her ear was coming from. Brain trauma…..being monitored for…next few days will tell if the brain starts swelling more or anything else occurs, infection etc. With the devastating and destructive flooding in all of southern alberta it’s been hard to get out to a larger city. Calgary plastic surgeon chose to have her stay and be monitored in brooks and see him in a week if she remains stable till then. I called and spoke with her GI dr and he agreed with a few modifications with actually keeping her on antibiotics to help prevent infection and sepsis as she’s so prone too. And also clarified yes her bone density scans done in april and every year were good, her bones are not fragile and that is not why this happened. There was a concern as they were watching her that she was showing symptoms of spinal fluid coming out of her ear as well as the blood….that has not stopped 9 hrs later. Possible signs of spinal base head fracture and spinal fluid build up in there. But may not be from CT scan results, those may change tho…either way her symptoms are worrisome as is the continued internal bleeding in her head. The swelling of her face has increased…she’s lost vision clarity a few times tonight for the first time since she came in, and loosing hearing in that bleeding ear. She has remarkably been completely coherent the whole time, despite the drugs and pain she has been in. absolutely no confusion, disorientation, or loss of memory of the incident, etc. That’s nearly a miracle in itself. As she did black out when she hit the ground. This amount of damage is from tripping while walking at a normal speed, not fast, with nothing heavy on, on the lifted part of the sidewalk that wasn’t properly even and falling onto flat pavement. The amount of trauma she has received is immense. Generally seen in forceful falls, car accidents, major traumas….not a minor everyday trip and fall to a healthy boned child. She is still unable to move on her own, and even to be moved with boards keeping her flat and straight causes intense amount of pain. She gets morphine every 2-4 hours to try and control it. And is on around the clock watch in and ICU observation room for neurological damage/worsening conditions requiring intervention. She will not be able to resume normal activities for the next 6-8 weeks. Her summer is ruined. She got to ride her bike once and swim once since the drain came out…last night in fact….I’m happy she got that in at least and we found the time to do so… All I can hope right now is nothing worse occurs, no brain damage, infection and any more life threatening risks then she’s already faced….she’s endured so much….how can so much pain and horror be inflicted on one child… Our hospital does not have wifi or internet access. So my updates will not be current and will be rushed as this one Is if I manage them at all. Dustin is thankfully sitting with her while I quickly do laundry and pack our bags to be prepared to be transferred out, and stuff for at the hospital now. I’m sure I’m missing a ton of info and stuff that happened, but for now the gist of it all has been given. Thank you all for all the support you’ve shown us!
We arrived home sunday night after a long week with many ups and downs in edmonton. It was a relief to finally be home, and in good health with the hopes of some things normalizing. I know with her it'll never be perfect health and we will always face challenges and even this bile duct issue may become a recurrence; but for a bit a break would be wonderful. lol
While she was in outpatient status I monitored her temps and she would get slightly elevated temps but nothing major and didn't develop into anything or needed medications to drop. Her cough has remained...and I no longer believe the anesthetic cough diagnosis they gave me. Her eating habits varied and wasn't as much as she usually ate, but still a good appetite for any other child lol. They dropped her being on ursodial which helps in her amount of bile production, and decreased the magnesium she was taking down to 500mg a day. We'll have to monitor thru bloodworks that her levels remain stable with the change. The amount of meds she takes now seems so little with all the recent reductions in the last month! lol I always get a slight panicky feeling at first glance thinking somethings missing! lol It has been such a relief not dealing with the drain, flushing it 3x a day, changing the bandaging etc! I wake up in the mornings thinking I still need to tho, it'll take awhile to break my mind of the habit and routine we developed over the last few months :) We enjoyed our day at home doing nothing but resting, laundry, unpacking, organizing etc before starting school and work the next day (tuesday). I made plans to go back to work and got her stuff ready for school. Life was going to return to normal(ish) for us, maybe I'd finally get a full month of work in finally! lol Unfortunately at 8:30pm as she was heading to bed she was hit suddenly with a headache and nausea.....I had hoped maybe it was just being tired or something....but I had noted she hadn't eaten dinner or any food of any real substance since noon....just small light snacks then nothing for the evening. At 9:30 she woke up and started vomiting.... :( She suffered a painful headache and bad dry heaving for the next couple hours...I ended up giving her a pain med for the headache to help ease that pain so she could sleep. It thankfully worked and was one that wouldn't mask a fever if one developed. So far no fever and it's 2am. I'm hoping this means it's a viral bug attacking her system and not sepsis or anything else liver related....I am so worn out with all these out of town trips and living and life in constant chaos, and most of all her suffering constantly! I'm debating packing our bags in case she does spike a fever and an ER trip that'd most likely result in us being sent to calgary or edmonton... But I don't need to take her until a fever occurs to indicate an infection of some sort could be the culprit. So far she's not showing any of her typical symptoms of sepsis thankfully and seems to be just viral symptoms. We'll see how the night goes...it'll be a long night for me checking her constantly for fever and being ready to leave if so... So...normalicy hasn't quite returned for us yet.... we'll try again another day?? Lol We had such a great day on Saturday! I Love ending our times up in edmonton being able to visit the awesome Kirk family and their incredible wolfhounds! Feeny and I are going to miss being able to visit them every 6 weeks now that she's tube free! But that does mean good health for her if we're not up here, so it's kinda bittersweet! lol I have to say between her having a good friend up here to hang with when we stay with our friends and being so close to drop in to visit with more great ppl and the wolfhounds, it's made our very difficult, stressful and for her painful times here, so much better, and gave her so much to look forward to and not just dread the need to be in edmonton. Thank you to Dave, Jill and Ash for their hospitality and awesome friendship, we couldn't have done and gone thru all this without your incredible help and support! And Thank you to Mary-Jo, Richard, sabrina and kaleb for letting us visit whenever we were up, see the wolfies and horses and have so many new experiences and memories to treasure, and for the great company and laughs! It may have been a rough go these last few months with all this, with so many ups and downs...but the great things we experienced helped make up for it <3 Life can finally start to normalize...as much as it can for Feeny with her restrictions and condition, but at least less of them for now. Her life will always be much like this...times of decent health...times of risk and painful medical intervention (this may not be the end of the drains and possible bigger surgeries even with the ducts, nevermind all the other things we're facing)...but when we have such a great support of ppl around us all over the world, it helps make those hard times so much easier to push ourselves through! Feeny with the wolfhound pups, now 9 weeks old. They were 2 weeks last she saw them and was helping bottle feed them <3 Feeny fitting right into the wolfhound cuddles. There's no human here! LOL Look how big these girls have gotten! When first Feeny met them they were 5 weeks old, and she was gifted with the privilege to name one Daisy <3 Feeny with the newest pup that just came over from Ireland :) Feeny with her most favorite wolfhound, Quinn <3 I had to sneak this one in....the pup I fell in love with there! LOL How could a person not fall in love with that face?!
Yesterday afternoon they released Phoenix from Hospital :) They hadn't yet received her blood culture results back, and she continued thru the night to having low-grade fevers off and on, despite tylenol and antibiotics. But they felt she was well enough to go out as an outpatient and stop all antibiotics to see how she does over a couple days after. She still has the constant dry cough, but they said it's from the anesthetic I guess.
So far she's done really well since being out! We haven't heard anything back yet about the blood cultures, so I'm going to go on the assumption that no news is good news! lol If she continues to do well tomorrow, we can head home sunday :) She's pretty excited to be able to go swimming and ride her bike once she's back and her site area is fully healed! This means the camps I put her in for the summer she can attend and participate in most of the activities like swimming, the water park, sports etc! I'm happy we are a few steps closer to normalcy in our lives once again :) I'm hoping this means our summer will be a great one and we can make up for the crappy last few months! lol No more trips up to edmonton either hopefully so long as she stays stable and the bile duct doesn't start to narrow and sludge build up again! The goal will be a hospital free summer ;) Feeny came out about 10:30 am from her procedure this morning. She only suffered a mild case of psychosis this time thankfully and nothing like last time. And- she is bile tube drain free! Once she heals she can go swimming, camping etc! Tho it is out for good due to unfortunate circumstances... turns out the last one wasn't in right and was too far in, had a lot of blockages and they said it had actually been completely useless the whole time, and her bile duct managed to stay open on its own thankfully without the drain doing so for it. That may explain why she was having the issues she did this whole time with it! They've also discovered her bile is abnormal and too thick, which they think may relate to why she built up the bile sludge like she had with the narrowing of the duct. They want to look into metabolic issues to try and figure it out and hopefully something can be done so we don't have to deal with the sepsis and bile drain stuff all over again.
Feeny was doing so well in the procedure they were going to release her from hospital same day! But as soon as she came out of the procedure she was suffering from a massive headache that wouldn't go away. It took 4.5 hrs to reach a dr to get permission to give her tylenol....in that time her symptoms worsened...the dr saw her but wasn't concerned as I was. By then she was flushed and feverish looking and hot feeling, but her temps were normal, her headache was so severe she couldn't speak above a whisper and only very slowly, and she wouldn't eat. They gave her tylenol and an hour afterwards she spiked a fever despite it, her breathing had become even more laboured and her heart rate was high despite her extreme lethargy and sleeping . while trying to figure out what to do she started to develop stiffness in her body and inability to move the one side of her body beyond wiggling slowly, but no bending or lifting abilities. Her temperature continued to rise every 10 mins when they'd check it. They had said the tube they removed looked horrid, as if it was in there far longer then it was. with a bad flaky material around it. My suspicion before the fever was sepsis, and as the other symptoms rapidly followed with fever, they agreed. Most likely from that tube. They drew blood, did blood cultures that'll show results within 48hrs and put her on a strong broad rang antibiotic, the same as they've always used to treat her for sepsis. I don't understand why they didn't give her an antibiotic as a preventative as they do even to clean her teeth for this....but now we will be in hospital at least another 48 hrs doing treatments. If she has responded well and the bacteria culture is identified and the antibiotics are the right ones for it, they may drop her down to oral antibiotics and possibly let her go home or to outpatient status then. So far after one treatment, she has started eating, headache reduced, she's able to stay awake, body mobility is back, and fever reduced, but hasn't fully broken yet. her heart rate and breathing is still a bit laboured and high, but not as bad as it was thankfully when her body was under so much duress from the poisoned blood flowing thru it. I wonder how much a human body can endure septic attacks without sustaining some measure of permanent damage in the body and organs, and brain, as it's leading cause of death is organ failure or brain death from the bacteria in the blood killing it. I know when her first case of sepsis and close call of loosing her to it last year with the deadliest form of bowel bacteria to get into her blood stream was, they checked every couple hours for a week for neurological brain damage, waking her up through out the night even to do the tests...they were certain she would have sustained further damage then she did...we were lucky then. But she has had numerous cases of sepsis now...what does that mean for her body? All I know is I have one hell of a strong kid <3 She is my hero <3 Late update on Kelowna trip and Back in Edmonton, another procedure...some not so good news...6/10/2013 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 |
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