We are back in Edmonton-hopefully things go more smoothly this time around! lol I am beyond exhausted already and we are at day 1 only! lol I spent 4 hours on Saturday cleaning my car...it's amazing how bad it can get due to work and a kid and 2 dogs! lol Then immediately after spent 4 hours packing to leave for Edmonton the next day. We left by noon Sunday after getting the last few things needed done and hit the road. Feeny had some homework this time around, so she worked on that and played her DS as I drove us the 5 boring hours up :)
We had a nice surprise when we entered our hotel room though! I had booked our rooms, but needed a microwave and fridge for food to bring up to cut some costs etc... They said it's an extra $5 charge to upgrade when I booked originally....which was fine...I had NO idea that extra 5 bucks meant a suite with 2 separate rooms with 2 tvs!!! LOL Feeny was OVER THE MOON over this! She was so excited she didn't have to share the TV with me! hahaha
I'm pretty impressed with the Super 8 here for that! It definitely made up for the annoyance of the paper thin walls and ceiling that the screaming baby beside us and the rambunctious kid above us was running and jumping as hard as he could for 4 hours straight till nearly midnight caused!
At first I was annoyed...then I felt incredible sympathy for the parents!! If a kid has that much energy....let him run it out and save your sanity and his life! LOL
Despite the cozy beds, how little sleep I already had and how sore I was, I still couldn't sleep a wink though (maybe it was the lack of child kicking me nonstop all night as we usually share a bed in hotels! ha!) and was wide awake watching my phone when it went off at 4:45 am for me to get up and start getting ready to be at the hospital for 6:45 am to start the first of Feeny's tests!
We started off with the wonderful bloodworks....then after a 1.5 hr wait between appointments in which we curled up in the cafeteria in chairs in a corner and I read while she played her DS, she went in for her GFR testing. Which is her kidney testing. They first hydrate her since she is NPO and they also inject a dye into her body and need her hydrated to watch it be processed through her kidneys. An hour later they withdraw blood to test it and they poke her in a different area then where they injected the radioactive chemicals. We killed that first hour in the library watching the fish in the tank...there was a kissing fish...but only one...and it was kissing a normal Cichlid who seemed quite enamored of it and kept going back for more!! Such an odd and funny sight! I took pics to prove it even! LOL
Then we waited another hour more after the first withdrawal and she had her ultrasound which was an hour long itself. She could finally eat at 1:30 and she chowed down on some goldfish crackers she brought while they withdrew another couple vials of blood, took pictures, did a bone age test and finally sent us off to her last appointment to see the doctors.
We kind of got some answers as to the sepsis issue she just recovered from.....though somehow they didn't know about it despite Brooks talking directly to their doctor on the team about it and being told what to do with her, and that was send her up to Calgary to be admitted and treated. They did have a fire and now no longer have a clinic for a couple months so of course that was alot of chaos for them.
Anyways, they figure the sepsis would have been from the foreign plastic tube in her chest, and it's not unusual for infection to occur from it. So it'll be a risk we deal with for the next couple months again, as they are going ahead and reinserting another bile drain on Wednesday. No assessment being done, they want to do this procedure twice to make sure the bile duct will hold open when they remove the drain permanently. Not sure if they'll see more once in there to make more judgement calls on if only one more is needed or if this will be a continuing process... so fingers crossed for Wednesday's outcome!
Tomorrow she has one more test to do as well, (the other was squeezed into today thankfully) which means we can have a much easier day then our 9 hour day today was! lol She was a trooper though as usual!!
On wednesday she will be admitted into hospital as well for a night if all goes perfectly...but we all know Feeny and how well those go! lol So we are expecting a few days in hospital, and a few days as outpatients they are figuring. So hopefully we'll be coming home next week if all goes well :) She'll probably need some healing time at home before returning to school again but at least she'll be in the comfort of her own home with her pups to help comfort and heal her :)
She is a bit disappointed hearing she isn't getting rid of the drain quite yet....she misses going to swim lessons, playing and doing gym like she used to. And she's upset she can't ride her bike yet and summertime is coming and taking her dog to the lake as she planned will be on hold till it's out for good.... She's starting to not like her restrictions needless to say! lol
Hopefully she'll be free by the summertime so she can enjoy the things she loves most...like camping!! We can't do so in a tent with her drain, not when I need to keep her stuff sterile and her drain and the site itself too! Immediate, direct access to running water and an area to keep things sterile would be needed....is tech needed as is with her regardless and I've been told camping in a tent isn't ideal especially if we don't have direct access to running water or flushing toilets, oh and shelter to help keep her out of direct sunlight during the peak hours of the day...it's kinda frowned upon putting her at such risks....but I can't deprive her of her love of camping because I'm not rich enough to own a truck and trailer to do so! lol
Some things we just kinda push the boundaries on.....and you have to in order to live and enjoy life at times ;) It's how you live life and the memories you make that matter; not how long we live that makes a life fulfilling and worthwhile, (and we know for her it's not the length we'd want her to have). Live life to the fullest, you only have one chance...or in Feeny's case 2 chances to do so ;) The gift of life would be wasted if you didn't LIVE the life you were gifted with!
We had a nice surprise when we entered our hotel room though! I had booked our rooms, but needed a microwave and fridge for food to bring up to cut some costs etc... They said it's an extra $5 charge to upgrade when I booked originally....which was fine...I had NO idea that extra 5 bucks meant a suite with 2 separate rooms with 2 tvs!!! LOL Feeny was OVER THE MOON over this! She was so excited she didn't have to share the TV with me! hahaha
I'm pretty impressed with the Super 8 here for that! It definitely made up for the annoyance of the paper thin walls and ceiling that the screaming baby beside us and the rambunctious kid above us was running and jumping as hard as he could for 4 hours straight till nearly midnight caused!
At first I was annoyed...then I felt incredible sympathy for the parents!! If a kid has that much energy....let him run it out and save your sanity and his life! LOL
Despite the cozy beds, how little sleep I already had and how sore I was, I still couldn't sleep a wink though (maybe it was the lack of child kicking me nonstop all night as we usually share a bed in hotels! ha!) and was wide awake watching my phone when it went off at 4:45 am for me to get up and start getting ready to be at the hospital for 6:45 am to start the first of Feeny's tests!
We started off with the wonderful bloodworks....then after a 1.5 hr wait between appointments in which we curled up in the cafeteria in chairs in a corner and I read while she played her DS, she went in for her GFR testing. Which is her kidney testing. They first hydrate her since she is NPO and they also inject a dye into her body and need her hydrated to watch it be processed through her kidneys. An hour later they withdraw blood to test it and they poke her in a different area then where they injected the radioactive chemicals. We killed that first hour in the library watching the fish in the tank...there was a kissing fish...but only one...and it was kissing a normal Cichlid who seemed quite enamored of it and kept going back for more!! Such an odd and funny sight! I took pics to prove it even! LOL
Then we waited another hour more after the first withdrawal and she had her ultrasound which was an hour long itself. She could finally eat at 1:30 and she chowed down on some goldfish crackers she brought while they withdrew another couple vials of blood, took pictures, did a bone age test and finally sent us off to her last appointment to see the doctors.
We kind of got some answers as to the sepsis issue she just recovered from.....though somehow they didn't know about it despite Brooks talking directly to their doctor on the team about it and being told what to do with her, and that was send her up to Calgary to be admitted and treated. They did have a fire and now no longer have a clinic for a couple months so of course that was alot of chaos for them.
Anyways, they figure the sepsis would have been from the foreign plastic tube in her chest, and it's not unusual for infection to occur from it. So it'll be a risk we deal with for the next couple months again, as they are going ahead and reinserting another bile drain on Wednesday. No assessment being done, they want to do this procedure twice to make sure the bile duct will hold open when they remove the drain permanently. Not sure if they'll see more once in there to make more judgement calls on if only one more is needed or if this will be a continuing process... so fingers crossed for Wednesday's outcome!
Tomorrow she has one more test to do as well, (the other was squeezed into today thankfully) which means we can have a much easier day then our 9 hour day today was! lol She was a trooper though as usual!!
On wednesday she will be admitted into hospital as well for a night if all goes perfectly...but we all know Feeny and how well those go! lol So we are expecting a few days in hospital, and a few days as outpatients they are figuring. So hopefully we'll be coming home next week if all goes well :) She'll probably need some healing time at home before returning to school again but at least she'll be in the comfort of her own home with her pups to help comfort and heal her :)
She is a bit disappointed hearing she isn't getting rid of the drain quite yet....she misses going to swim lessons, playing and doing gym like she used to. And she's upset she can't ride her bike yet and summertime is coming and taking her dog to the lake as she planned will be on hold till it's out for good.... She's starting to not like her restrictions needless to say! lol
Hopefully she'll be free by the summertime so she can enjoy the things she loves most...like camping!! We can't do so in a tent with her drain, not when I need to keep her stuff sterile and her drain and the site itself too! Immediate, direct access to running water and an area to keep things sterile would be needed....is tech needed as is with her regardless and I've been told camping in a tent isn't ideal especially if we don't have direct access to running water or flushing toilets, oh and shelter to help keep her out of direct sunlight during the peak hours of the day...it's kinda frowned upon putting her at such risks....but I can't deprive her of her love of camping because I'm not rich enough to own a truck and trailer to do so! lol
Some things we just kinda push the boundaries on.....and you have to in order to live and enjoy life at times ;) It's how you live life and the memories you make that matter; not how long we live that makes a life fulfilling and worthwhile, (and we know for her it's not the length we'd want her to have). Live life to the fullest, you only have one chance...or in Feeny's case 2 chances to do so ;) The gift of life would be wasted if you didn't LIVE the life you were gifted with!