Here are the updates, from where I last left off until today…Please forgive any of the emotional fueled comments or status’s….
June 22:
Phoenix has thankfully remained stable so far overnight, and we've remained admitted in an ICU observation room in our town’s hospital. She's still unable to move at all, and has not been able to sit up or even turn to her side. Her pain is still tremendous. She cannot eat even tho she wants to try. She's unable to open her mouth more then to squeeze a small straw in. And the act of swallowing causes intense pain in her head and face. The swelling in her top lip has actually gotten worse and it's hard feeling, not the soft swollen feeling. She cannot feel it either or move it well so nerve damage is a concern. She's also started to emit a lot of body heat...but feels cold. She's being monitored for Fever now as infection occurring inside her head even on antibiotics is a very high risk.
No major spike in temp, just sitting higher than normal-borderline so far. There is blood coming out her ear again tho... She's trying hard to drink her soup and boost drinks at least, it's not much and they may hook her up to IV continuously soon to get her fluid intake up. They're also threatening feeding tube if she doesn't start drinking lots of boosts to get her protein in. So hard when she can't move her mouth and for the next 4 weeks or more soft food diet and right now liquid diet only orders...
So far we’ve been told It’s Fractures in her sinuses, cheekbones and jaw. Bleeding out the ear they think is from the cheekbone fractures. Fractures are from the force of impact to her chin. Bones are not brittle or weak at all, bone density scan done in April shows that.
They said the few days afterwards are more painful than the day of the injury... She's on a High dose morphine every 2.5-4 hrs and it barely helps the pain... She may be having an allergic reaction to the IV antibiotics tho. She's tasting blood in her mouth and back of throat can't lay down without having trouble swallowing, headache the morphin isn't touching, severe nausea requiring IV gravol and now a rash starting... The blood taste may be the blood coming out of her ears from the sinus fractures also draining down her throat they said tho.
June 23:
In the evening last night feeny started to worsen considerably... At nearly 2am the dr determined it was concussion symptoms... Not a bleed in the brain... She wasn't properly woken when doing neuro signs from what I understand at some point but right now her blood pressure is very high, she's barely responsive and seeing double with what little she can open her eyes. A ct scan (6:30am) is being rushed to get done and most likely transport to Calgary. They don't know if they can even physically get her there with the flooding tho...
I'm still waiting on a dr to show up... The CT scan has been done tho. I slept in a chair beside her bed last night she was in so much pain... only 3 hrs by time we got settled in and her drugged up enough to rest finally longer then 10-15 min without issues and her crying from it all... then up at 6 with the worry of her stats and lack of full response, difficulty rousing with double vision.
Phoenix is doing better on a continuous morphine infusion now. The change in her since we were transferred by ambulance to children's hospital in Calgary and they started this type of pain management has been incredible. Her mouth is unable to open much, even without pain affecting it as much. Radiologist looked at the scans, saw the jaw hinge areas are angulated a bit where they are broken. May require surgery to fix. She's spiked a fever tho as well since being here so she's being treated for infection on IV antibiotics that are damaging to kidneys too... And she already has stage 2 kidney failure from her medications needed to prevent her body rejecting her new liver. So they're trying to figure out the right balance and treatment. May need more scans etc... And she'll see the plastic surgeon tonight or in the morning. We are still in the ER room as the hospital is at 115% capacity, understandable due to the extreme mass destruction the floods have caused to most of central to southern Alberta. Thankfully this part of the city has remained untouched and their hospitals here can continue to run and not be evacuated as so many others have been and other major parts of Calgary has been. This may be a horrible situation and I seriously wonder what curse plagues us at times... But we are lucky compared to hundreds upon hundreds of thousands others right now suffering and having lost everything with insurances refusing to cover natural disasters...
We saw the plastic surgeon tonight. He says when Brooks contacted him they didn't tell him about the breaks in the jaw joint/tmj area, otherwise he would have had her sent up to children's ASAP. He said that in both CT scans they missed scanning her chin area... The point of impact that resulted in the fracturing of the jaw joints, cheekbone and sinuses. He took a look at her teeth and they don't line up or close fully to touch...Nor can she widen her mouth more then to get a straw and now finally spoon somewhat in. He thinks she may need a surgery to wire her mouth closed to heal the breaks in her jaw joints on both sides which would remain for up to a month. There is a risk that the growth plates in her joint areas have been broken. Which may affect her continuing growth as she grows. Causing one side to grow longer than the other, her teeth will grow out of alignment and not touch etc needing future further surgeries of breaking and removing etc of her jaw to fix... He will be back in to see us in the morning to make a decision. More scans will have to be done of course too. She still has blood leaking from her ear and hearing loss as well from it. A room may be available shortly for us too thankfully. It's after 10pm and we're still seeing specialists and booking scans and tests for her... It's been a long day and this new news of possible future complications after going thru this hell is breaking my heart... These kinds of injuries require alot of force to create, they keep saying to me...
June 24:
Thank you everyone for all the wonderful support and well wishes! I'm trying to go thru them all with her, but it’s hard to keep track of all the notifications thru my phone! Lol I'm sorry if I miss replying or liking some to acknowledge we read them! Right now we are just waiting on a CT scan to be done again, and then she may go in for surgery right away today afterwards. She thankfully slept the best she has since before the accident, with the morphine drip controlling the worst of the pain. They have to figure out diff ways to do the surgery and anesthetic because her jaw can't open to put a breathing tube in, and she can't wake in a psychosis and risk causing herself considerable pain and damage with her mouth wired closed...
We are now currently awaiting for Feeny to come out of surgery. They figure it'll take about 2 hours. There will be more than just wiring her jaw closed for a month. The new FULL and proper scan done shows her chin has a fracture (break from bottom of her chin right up between her teeth) that has actually split apart in it. They will also be putting in a permanent metal plate in her chin for that. After a month they will get rid of the elastics that keep her jaw closed to keep immobile the breaks in her jaw bone joints on both sides, but the wiring stuff will remain for a few months before needing to be surgically removed. She will most likely suffer arthritis and TMJ issues from this, and is unable to take anti-inflammatories ever due to her new liver and immunosuppression. so relief of such pain will not be possible. We also saw the dentist here to consult on her replaced tooth. Unfortunately the chances of it taking and her being unable to do a root canal in the next 2 weeks while feenys mouth is wired closed puts that at an even higher risk of loss. I'm looking at 5000 for an implant once she is fully grown and they could do that then. We are also waiting on the specialist for her ear, he will look in her ear while she is under already as there is very real concern about the blood loss and loss of hearing. There is a very real chance he said the bones in her ear moved as well and she may have permanent loss of hearing, or severely reduced hearing in that ear. We will be doing some hearing tests as well, in a few weeks. So, this fall is now definitely going to affect her for the rest of her life. She will never fully recover from it and will have lasting and painful issues from it. I am so incredibly thankful to that one nurse in Brooks for pushing them to send us up here finally....for knowing her stuff and looking out for us...had she not kept such a good eye on Feeny, been the one to raise the alert, and insist on us being sent to calgary....I can't imagine how much longer it would have been she would have suffered with broken jaw hinges and split chin bone that HAVE to be fixed and can't heal on their own...we were only sent to calgary for "Pain management" not fix the numerous breaks in her face and worrisome brain bleed symptoms and brain swelling! I'm so frustrated over this....
Phoenix is out of surgery finally... Took a bit longer then expected and her recovery after has been difficult. She is having extreme pain from her tooth that was knocked out, and only pushing on it helps relieve that pain. She says it feels like her bottom teeth are in front of her top teeth too. So probably pulling alot.. We are trying to get a hold of the surgeon to see if we can fix that as they've used up the max amount safe for her on pain medications and its not working. The ear specialist looked in her ear while she was under and discovered bone from the jaw/ear area poking thru into the ear canal... That was where the bleeding was coming from... She will need hearing tests in a few weeks now.... :s
June 25:
So it looks like a few more days in hospital for Feeny.... We are having issues with pain control, lethargy (noon now and still asleep, cant stay awake unless we force her) high blood pressure, and a numbness in her leg to touch and we discovered first time getting her to walk since Friday to the bathroom, limping due to loss of feeling... Just saw the dietician and she will need to be on a blended diet that works for her high fibre needs but also not affect her kidney function as some foods do, need a bit higher in protein but not too much cuz of the kidneys, higher calcium of course and a bunch of other needs, plus quick on the go foods and supplement boost shakes so she doesn't loose weight and since we'll be on the road back and forth a few times a week potentially to deal with everything... It's going to be very expensive feeding her now... It was expensive feeding my bottom less pit before! She always out ate 2-3 adults at meal time and ate nonstop in between meals! Lol
My sleeping beauty is finally back to sleep for the night, and doing so comfortably :) we've managed to get her pain under control with high doses of morphin and 2 other meds given every hour one after the other around the clock. She's discovered a new loose tooth in her mouth too.. Of an adult one.. But nothing can be done about it right now. They figure the reason her lost and put back in tooth is causing her such incredible amounts of pain is because since it was out in Friday, her jaw was dislocated and broken on both sides so her teeth weren't touching that whole time... Now they've been fixed back into place in their original state in which her front teeth overlap her bottom teeth so her molars can touch... This putting pressure on the tooth that had set and settled into a position without that form and pressure there. Added in the metal surrounding All her teeth too doesn't help much lol. Once its adjusted to the new positioning and form it should stop being so painful. She saw her face for the first time today... and was horrified by it and refused to look in the mirror again as she washed her hands...she's not usually self-conscious ( still tends to have remains of lunches etc covering her face after school with sweat soaked rats nest hair! Lol) but the degree of swelling was shocking to her and we tried to explain it'll go away... But she wasn't content with that :( She has finally been able to get up and move as well, has 3X made the short few steps to the bathroom, and with less help each time :) she has already asked for a wheelchair trip downstairs to the gift shop too ;) lol it's nice to see her wanting to be on the go again :) she's made huge improvements today ♥
June 26:
It looks like we may be released from hospital by noon tomorrow :) they haven't yet figured out why her blood pressure is high... But at least it's not 163 over 107 anymore! Lol her pain is getting better, and she even went to an art class and built a dog out of wooden blocks :) she went by wheelchair then, but walked to go to pet night to cuddle the pups there :) she has managed to break several of her rubber bands keeping her wires in her mouth together... May need more put on before we leave! Lol someone still tries to be a chatterbox! Lol we have noticed when she stands and closes her eyes she literally falls over.. But they don't want to investigate it... At least we'll be home soon! She'll need the stitches out of her chin Friday, and Tuesday we are back up but to a different hospital to see the plastic surgeon to see how she is healing, and put more bands on.
I think sleep is going to elude me tonight... Poor feenys blood pressure sky rocketed to 176 over 117.... She's having horrible body spasms and a rising temperature with a persistent cough... They started a new and only every 12 hr pain med and its an antinflammatory... Something she shouldn't have especially with her kidneys but they deemed it safe enough in the short run and she did ok on ibprophin last few days... I don't think she's doing too good on this one...
June 27:
My level of frustration is nearing its max! All these last few days I've been pestering them about her high blood pressure, they kept being unconcerned and even tried to push us out of the hospital by evening last night but pharmacy was unable to accommodate them on such short notice to do so, and I was not happy as they had her on high pain meds every freaking hour, then literally dropped it to nothing except every 12 hrs with no transition and tried to send us out, I didn't like chancing her not being able to manage the pain with no back up that way. So we stayed with being told in the am we'd be released. NOW they are concerned over her Blood pressure and don't want to release her!!
I'm nearing my breaking point. Feeny may lose more than the top tooth. The split in her chin bone went right thru her teeth... She has loose teeth on the bottom of her jaw... She may lose them as well... All adults they said today...The stitches have been removed at least. Still waiting to hear if we can be released... I received another stressful phone call from head office work once again informing me of my loss of medical benefits due to not making full time hours these last few months as I’ve been struggling to care for Feeny In hospitals and juggle work and couldn't magically do both full time, and have now taken the next 2 months off to care for her thru this as I can’t juggle inbetween times like I tried the last few months to do…..so hearing this As I sit here with my now partially deaf child, mouth wired shut, and facing the prospect of losing more adult teeth with potential costs of over 20,000 in teeth replacements,( I told them what I was facing up here, the condition my child is in medically, they know her previous issues well and hired me on knowing them) was a crippling blow to my already fragile stressed out self. That news could have waited….and definitely so on the repeating of it 2 days in a row considering the current medical crises I’m enduring with my child…
June 27:
So it looks like we are forced to stay a few more days in hospital. With having to deal with work bothering me over things to get done for them asap and reminding me I've now lost my medical benefits and being told the new news that she may lose more adult teeth, still has persistent hearing loss and now blood pressure and possibly worse kidney related issues...and we are stuck here longer and I can't get home to get what work wants me to do ASAP as demanded. I hit my breaking point... I tried not to cry.... I haven't yet cried through all this, I kept strong. But having that all thrown at me with potentially 10-20 thousand dollars in dental I'm facing and have work treat me like this… I couldn't help but give in to tears... Made worse by not being able to hide them from Feeny and have her try to comfort me telling me we always manage, we always find a way... With her mouth wired shut no less... She shouldn't be comforting me, that's my job to comfort her! I wish I had her faith it will turn out in the end...
Feeny’s lecture to me was; it WILL work out, it always does, life goes round and will always come around, first half of the circle can be bad, but the last half is the good, the circle of life, and it can't be broken, just wait for it. I had to think to understand her meaning in diff terms, but I understood quickly what she meant. Not sure when she got so wise... But think I better start listening to her!
I'm just gonna get nice and comfy in the hospital... Settle in like I'm living rent free! Cuz some little brat of mine can't stop talking, as the plastic surgeon noted how amazingly well she does talking thru the wiring, and as I was watching her talk this evening noticed her tongue dart out... Now that def shouldn't be possible, she managed to break several more bands out of her mouth today! Then I checked her bite to make sure her teeth lined up with her overbite and Molars in place... And.... They're not... It's off and unable to close on the one side which we suspect could be her jaw has slipped out of place again.... God only knows what this means to figure it out and fix it! Told her I'm duct taping her mouth closed after this with only a straw hole in it!! LOL
June 28:
Soooo... Dr was just in, they are going to try and Book feeny in for surgery today or tomorrow to reset the jaw bone again and this time wire her mouth shut with wires attaching top to bottom instead of elastics. They couldn't believe she managed to break nearly all 15 already!! Lol! They usually don't ever do the wire closing but Phoenix of course needs to be an exception to the rule! Lol we'll def be stuck here and miss out on Canada day long weekend now... And we prob would have been released today as her blood pressure has completely normalized and remained so since yesterday! Go figure! Lol
Things didn't go well in surgery, when feeny came out she was freaking and in huge amounts of pain, they finally brought me in... I immediately without her saying anything saw the problem...when they re-set her jaw again it was pushed too far back on the bottom creating a huge gaping overbite I could fit my pinkie finger between! They didn't realize she already had a crossover bite and were trying to match up her molars... Which never aligned properly before the accident... This caused her huge pain in her teeth and jaws into her ears that none of the pain meds could touch. I've never seen her so distraught... As soon as I reached her bedside she lunged up and grabbed me around the neck forcing my folded over the railing and refused to let me go, kept begging me not to leave her or let her go while crying and screaming in pain. She nearly vomited several times, and thankfully didn't as we would have had to of taken wire cutters to release her jaw so she wouldn't choke on it. I had the dr that did the resetting and wiring come back immediately and I showed him pictures of her mouth before the accident the way her teeth aligned. The surgeon on holidays that did her mouth the first time was contacted and I spoke with him as well. Once they realized about her cross over bite and the obvious tremendous pain this setting was causing they agreed to take her back under and fix it, thankfully. Being put under twice so close together is risky tho... And I guess the last time before this she stopped breathing at one point a nurse said...she's just gone for the second surgery...and they suspect they may need to put a metal plate in her chin if the moving of her jaw makes it move too much. I hope this is the last of them for her... She really wasn't handling it well emotionally...she's been thru enough...
Saw the dr... First words were you were right! LOL I like him! He thinks its all fixed and aligned this time... Will be a few days in hospital tho he said... Still waiting for her to come out of recovery, they want her on a morphin drip coming out.
Feeny's finally back in her room now. Still asleep tho. She's had massive amounts of morphin and other drugs so she may just sleep the rest of the night. And she's on a morphin drip right now. She says her pain is only a 5 tho so that's good. She does once again have high blood pressure that they are concerned over. We'll be in hospital a few more days from what the surgeon said.
She's refusing to talk or wake up tho. Most I get are hand signals and nods. I took a quick peak and it def looks better in the front. She's so drugged tho I don't want to push her... Hopefully in the am we can judge by looking and her pain levels to know if its properly in place.
A few hours later she was up watching funniest home videos on t.v. She's definitely feeling better as this is our convo: Feeny says we have to make a funny video right now to send it! I ask why? So we can win the 5000 dollars! I start laughing, then doubled over laughing as she continued with And then I can get a wolfhound with it!! Lmao gotta love her priorities!
June 29:
Feeny did great overnight with help from the morphine drip. She is currently having pain in her front teeth, but hopefully that'll resolve itself... it’s bad enough she won’t talk and writes things down instead...She did have double vision issues at one point, but it went away. Her blood pressure went back to normal as well thankfully. Unfortunately her tacrolimus (anti-rejection med) levels are way too high... So they want to wait till she's off the antibiotics causing the extreme diarrhea (possibly disrupting the absorption of meds)to test again and start up her meds again. So far we've held back two doses and waiting on new level results from her morning bloodworks. So it'll def be a few more days stuck in hospital... Why they don't get rid of that antibiotic and switch it to ones we know don't cause this is beyond me. They've been giving her a stomach protecting medication too because of it and that also can affect her tac levels... If its not one thing, it's another...
So, they've stopped the morphine now. We'll see how she does with pain management plan being the same as before the new surgeries yesterday thru the next 12-24 hrs. Surgeon popped in again too. Says he found a loose adult molar while working on her... And he wired the two front bottom teeth together as they were gaping apart from the splitting break in her chin that runs up thru them. So now we are looking at potentially loosing 4 adult teeth from all this... :(
I'm constantly amazed by the incredibly big hearted people we come across in our lives! The wolfhound community has been rallying together to help raise funds for Phoenix the last few days, for a child they don't know, but care about and for as if they were close friends who see us everyday! ♥ their hearts are as huge as their hounds are legendary ♥ and even a wonderful volunteer at the gift shop downstairs after speaking with us a short time, took the time after her shift to run to the mall to grab soups for Feeny (only mushroom given here, she won't eat it and lives off vanilla ensures) and even frozen yogurt for us both! And yummy smelling hand sanitizer! She offered and went to do so even tho I said we were ok! ♥
July 1:
HAPPY CANADA DAY!! So happy and proud to be a Canadian and FREE!!....from the hospital!!! LOL we've been given the go ahead to escape and head home after 11 days in hospitals! Fingers crossed its smooth sailing from here, I don't want to see another hospital room for a very, very long time! Lol