Well, it's kind of a blur to think what the last 10 days were like. Lots of nervous moments, lots of great moments. Julie did it and will work towards the next phase of recovery which pretty much entails getting through some months that will allow her to continually but gradually regain her spot on the court (volleyball of course). To get there, she has to take things slow and make it to the all important "fusing" stage. This is critical to her success of this ordeal.
Her last day in the hospital was pretty uneventful. Pretty much just waited for the doctor to tell us we can head out. That did happen around 4pm yesterday on 2 Nov 2011 which is a pretty rare date that was the only November palindrome day that will occur in the 21st century. [11/02/2011]. Maybe this will be a special reminder for Julie looking back at this special day. Or, her geek dad just thinks that's pretty cool!
The trip back was great and she slept for most of it as she just had her final liquid supplement of narcotics just before leaving the hospital. All in all, a great day to a finished surgery. Time to continue healing and getting stronger in the months ahead. Looking forward to helping her get there and support her during difficult days which I am sure there will be.
Thanks everyone for your Facebook posts of encouragement and concern for Julie and all of us. It was nice to get the info out to you all to share what we were going through.
:-)
Thursday, 3 November 2011
Tuesday, 1 November 2011
A light at the end of the tunnel!
It's been a few days since I have updated as there were small changes to Julie's recovery since Friday but really what seems small is still quite significant. With the main surgical procedures done it's like "well, that's it I guess". Clearly, there's more than just the surgery to endure. She was on the verge of walking since the last post. She had stood up but really no true walking around until late Friday. So, this occurred on Saturday as expected and as Julie put it, "It feels like I am carrying around 100 lbs on my shoulders". Fair enough knowing she had practically each vertebrae moved or jarred.
Her walking small distances became larger distances on the weekend but she was always ready to lay back down (no pun intended) and rest the "100 lbs" of unknown weight that she was carrying. The first few walking loops up here in 3R (the 3rd level) were quite impeded by the connections back to the IV, catheter, etc...but that became much less restrictive once they were removed on Saturday. Yay! That was a huge relief and also made us wonder how she'd react to switching from the drip morphine to just the non-drip small dose with her Tylenol every 4 hrs. Well, she did well with it. Not pain free but quite manageable.
Her nights have been a bit challenging as it's the quiet time and less moving around as mom and dad try to get rest depending on who was in with her. Her 1st half on the night seemed to be the most uncomfortable and her need for sleep seemed to take over in the latter part of the night. Mostly more pillow adjusting, a few minor complaints, and just a few requests.
Once her chest tube was removed on Sat. morning, she had her standard chest xray follow up routine and it showed a significant volume of air surrounding her right lung (the one that was deflated for surgery #1). This could have had an impact on her breathing on that side however, she just wasn't showing any signs of degraded breathing and her oxygen was perfect. So, they ordered a few more xrays over the next couple days to see if this air pocket was trending in the right direction and going away. It has been so we are happy about that.
The weekend sleepovers were quite different day to day. The girls slept over Friday night (mom & big sis), I slept over Sat/Sun, and mom and dad both slept over last night. Once her lines and tubes were removed Julie liked the cuddling while holding the big pillow on her back while she watched TV on her left side. That seemed to be a favorite.
The last and final hurdle was getting the physio lady onboard with giving Julie the "green" light to hit the road. Well, Julie just finished going up and down stairs with her just an hour ago. No problems there so we should be in the home stretch for hanging up the blue gown and hitting the road Jack (I mean....Julie). Is that a song?When we do leave it will be gently of course in the interest of bad backs)! I knew I should have gotten my pilot license, would come in handy for this trip in the car upcoming.
So, all systems are a "go", we just need to get the Dr. endorsement and we should be making the big trip to home very soon. It's been interesting and the BC Childrens Hospital experience has been tough but rewarding thus far. Staff was exceptional and Julie continues to be awesome going through this and she is very motivated to get over the hurdles in record time. I think the biggest challenge upcoming with be to hold back the reigns on her because as good as she feels, she has a strict timeline ahead that she must follow for her surgery to be 100% successful. She has some bone pieces in around that spine of hers that will be expecting to be left alone while they fuse to the newly straightened vertebrae. Too much activity too soon and that little step fails and you are now relying on the installed rods to do more than they're supposed to and this would probably be a "bad" thing. We'll keep her pretty restricted on physical activity and I think she won't feel like doing handstands for a while anyway. haha.
Thanks everyone again, it's been nice letting you all take a look into this life changing event for miss Julie.
Julie & Family
:-)
Her walking small distances became larger distances on the weekend but she was always ready to lay back down (no pun intended) and rest the "100 lbs" of unknown weight that she was carrying. The first few walking loops up here in 3R (the 3rd level) were quite impeded by the connections back to the IV, catheter, etc...but that became much less restrictive once they were removed on Saturday. Yay! That was a huge relief and also made us wonder how she'd react to switching from the drip morphine to just the non-drip small dose with her Tylenol every 4 hrs. Well, she did well with it. Not pain free but quite manageable.
Her nights have been a bit challenging as it's the quiet time and less moving around as mom and dad try to get rest depending on who was in with her. Her 1st half on the night seemed to be the most uncomfortable and her need for sleep seemed to take over in the latter part of the night. Mostly more pillow adjusting, a few minor complaints, and just a few requests.
Once her chest tube was removed on Sat. morning, she had her standard chest xray follow up routine and it showed a significant volume of air surrounding her right lung (the one that was deflated for surgery #1). This could have had an impact on her breathing on that side however, she just wasn't showing any signs of degraded breathing and her oxygen was perfect. So, they ordered a few more xrays over the next couple days to see if this air pocket was trending in the right direction and going away. It has been so we are happy about that.
The weekend sleepovers were quite different day to day. The girls slept over Friday night (mom & big sis), I slept over Sat/Sun, and mom and dad both slept over last night. Once her lines and tubes were removed Julie liked the cuddling while holding the big pillow on her back while she watched TV on her left side. That seemed to be a favorite.
The last and final hurdle was getting the physio lady onboard with giving Julie the "green" light to hit the road. Well, Julie just finished going up and down stairs with her just an hour ago. No problems there so we should be in the home stretch for hanging up the blue gown and hitting the road Jack (I mean....Julie). Is that a song?When we do leave it will be gently of course in the interest of bad backs)! I knew I should have gotten my pilot license, would come in handy for this trip in the car upcoming.
So, all systems are a "go", we just need to get the Dr. endorsement and we should be making the big trip to home very soon. It's been interesting and the BC Childrens Hospital experience has been tough but rewarding thus far. Staff was exceptional and Julie continues to be awesome going through this and she is very motivated to get over the hurdles in record time. I think the biggest challenge upcoming with be to hold back the reigns on her because as good as she feels, she has a strict timeline ahead that she must follow for her surgery to be 100% successful. She has some bone pieces in around that spine of hers that will be expecting to be left alone while they fuse to the newly straightened vertebrae. Too much activity too soon and that little step fails and you are now relying on the installed rods to do more than they're supposed to and this would probably be a "bad" thing. We'll keep her pretty restricted on physical activity and I think she won't feel like doing handstands for a while anyway. haha.
Thanks everyone again, it's been nice letting you all take a look into this life changing event for miss Julie.
Julie & Family
:-)
Friday, 28 October 2011
Standing Up!
Well, it was a pretty long night on the midnight shift with Julie. She was pretty uncomfortable and was very much following the book on "post-spinal" reactions according the the nurse that was tending to her during the night. Fidgety, uncomfortable, move here, no go back to where I was please, etc...I helped with most of that which really wasn't much more than pillow behind back, pillow away from back, pillow between knees, pillow away from knees. Now repeat that about a 20 times over the night. It is so tough to hear "I am sooo sore daddy". But, she stayed manageable and dad didn't get too much crap (just the odd, "just do it already" as I was trying to be "extra" careful. Jeepers child, sorry if I am concerned about the 4 tubes, 1 catheter and a plethora of IV connections. Haha, I was tired but exceptionally patient which is not my norm in the middle of the night. Tolerance has many levels and I think this experience thus far has enlightened me on this. She would return to normal quickly and always reaffirm her love and thanked me for helping her. :-)
So, after the rocky but managed night, she had a great quarter between 5-8am. I think I got my best rest then too (no surprise there). She came to around 8'ish and breakfast was there where she managed to have lots of good stuff. Not overly happy about the lack of "honey nut" on the cherrios but did have some nonetheless. Maybe a bit on Nutella on the toast would have been nice too but it's all good.
Late this morning she just blurted out "daddy I want to sit up"! Sweet, so we sat up. It was very nice to just hold her and hug her and I could hear her happiness in her heartbeat as we embraced for probably 10 seconds but it felt like a few minutes. Down she went and we high fived and chatted. Not long after she says "I want to stand up"! I was so happy to hear her taking the lead on that. It would seem so easy to pick the high ground and stay relaxed and calm in bed but not Julie, she wanted to test this new back. Mom was just arriving so we held off for this important milestone.
With the nurse assisting, we did the standing up routine pretty gingerly. Letting Julie take the lead and reading her body queues, I brought her up to the edge and mom got a quick little video of her 1st standing up. Once up, we swapped spots and mom got to hug her see her little girl standing up straight literally (1st time in a few years)! Some nice pics of mother/daughter were taken. There may have been a method to our madness, we've been chomping at the bit to see if she is 1" taller or what? Mom is a great reference since she is near where we suspected Julie would be. Well, the picture with mom reveals that little miss Julie stands even with Jessie at about 5"6" compared to the 5'3" on Monday. 4 days + straightened spine = 3 inches in height. Now that's a growth spurt! Wow, simply amazing.
So, I am sure walking will be in the near future and we look forward to that. She is getting her chest tube removed today too so add that to the "looking forward to that" list. That's been a sore spot for her this whole time, attested by her on many occasions since the start of the procedures. More to follow on how she progresses with her 1st steps, etc..Thanks for tuning in, being supportive, and being interested in Julie's recovery. Talk to you all soon,
Julie & Family
:-)
So, after the rocky but managed night, she had a great quarter between 5-8am. I think I got my best rest then too (no surprise there). She came to around 8'ish and breakfast was there where she managed to have lots of good stuff. Not overly happy about the lack of "honey nut" on the cherrios but did have some nonetheless. Maybe a bit on Nutella on the toast would have been nice too but it's all good.
Late this morning she just blurted out "daddy I want to sit up"! Sweet, so we sat up. It was very nice to just hold her and hug her and I could hear her happiness in her heartbeat as we embraced for probably 10 seconds but it felt like a few minutes. Down she went and we high fived and chatted. Not long after she says "I want to stand up"! I was so happy to hear her taking the lead on that. It would seem so easy to pick the high ground and stay relaxed and calm in bed but not Julie, she wanted to test this new back. Mom was just arriving so we held off for this important milestone.
With the nurse assisting, we did the standing up routine pretty gingerly. Letting Julie take the lead and reading her body queues, I brought her up to the edge and mom got a quick little video of her 1st standing up. Once up, we swapped spots and mom got to hug her see her little girl standing up straight literally (1st time in a few years)! Some nice pics of mother/daughter were taken. There may have been a method to our madness, we've been chomping at the bit to see if she is 1" taller or what? Mom is a great reference since she is near where we suspected Julie would be. Well, the picture with mom reveals that little miss Julie stands even with Jessie at about 5"6" compared to the 5'3" on Monday. 4 days + straightened spine = 3 inches in height. Now that's a growth spurt! Wow, simply amazing.
So, I am sure walking will be in the near future and we look forward to that. She is getting her chest tube removed today too so add that to the "looking forward to that" list. That's been a sore spot for her this whole time, attested by her on many occasions since the start of the procedures. More to follow on how she progresses with her 1st steps, etc..Thanks for tuning in, being supportive, and being interested in Julie's recovery. Talk to you all soon,
Julie & Family
:-)
Thursday, 27 October 2011
Stage 2 Complete for Julie!
Well, Julie got through stage 2 without a snag. She was brought back to ICU for post-op care yesterday around 5pm and stayed for the night. She did have some blood loss and they gave her a couple of units of blood to keep her levels up. Platelets working overtime seemed to do their job.
Her xray looks amazing and it was such a relief so talk to Dr. Miyanji yesterday to get his take on the procedure and how it went. She is so much straighter and he did a quick measurement and said 17-19 degrees of curve. Not bad considering it was 90+ degrees two days ago! Wow, amazing surgeon and team!
So, today she's getting tidied up in ICU, a bed change, cleaning routine, etc...and up she goes to the 3rd level. Yay! Hopefully start to get her on some more food items (popsicles and apple juice have been fav's thus far). Dr. Miyanji told us she will probably stand today so we'll see how she is feeling up top. Still got some happy juice in the veins so not sure how much of that we'll do. Take that as it comes.
That's about all, we are so happy for her, she is truly strong in spirit and body after seeing what he did to her spine and ribs. I was kind of chomping at the bit over how much taller she is and it looked like I was doing matress design measurements yesterday as I was collecting a bunch of data of foot to knee, knee to hip, etc...because she wasn't laying straight. Definitely a few inches of growth so that is exciting. We'll see how then next few days go as we get her up and start some loops around the ward. Probably will know the route quite well after a day or 2. More to follow, thanks everyone for support.
Julie & Family
:-)
Her xray looks amazing and it was such a relief so talk to Dr. Miyanji yesterday to get his take on the procedure and how it went. She is so much straighter and he did a quick measurement and said 17-19 degrees of curve. Not bad considering it was 90+ degrees two days ago! Wow, amazing surgeon and team!
So, today she's getting tidied up in ICU, a bed change, cleaning routine, etc...and up she goes to the 3rd level. Yay! Hopefully start to get her on some more food items (popsicles and apple juice have been fav's thus far). Dr. Miyanji told us she will probably stand today so we'll see how she is feeling up top. Still got some happy juice in the veins so not sure how much of that we'll do. Take that as it comes.
That's about all, we are so happy for her, she is truly strong in spirit and body after seeing what he did to her spine and ribs. I was kind of chomping at the bit over how much taller she is and it looked like I was doing matress design measurements yesterday as I was collecting a bunch of data of foot to knee, knee to hip, etc...because she wasn't laying straight. Definitely a few inches of growth so that is exciting. We'll see how then next few days go as we get her up and start some loops around the ward. Probably will know the route quite well after a day or 2. More to follow, thanks everyone for support.
Julie & Family
:-)
Tuesday, 25 October 2011
Day 2 Update for Julie!
Well, a couple days of a long wait and it's been a bit of a shock to our system. Julie has been so strong in this journey so far and I don't see this changing anytime soon. Day 1 of surgery is complete and Dr. Myianji did what he expected to do with no problems whatsoever. The big shock for all of us was probably seeing her post surgery still sedated but waiting to come to. Funny how you know things and expect things but it happens you feel so shocked. Well, that's how we were to hear her 1st few words of "I love you" or "I hear you but can't see you". Flopping her hands around like Jake in Avatar wondering what all this crap is in her hands/arms! Once her eyes opened it was better and her comments quickly ramped up to her usual joking, crazy self. Quite medicated so she was a bit over the top and the slurry speech added to our anxiety but yet gave us laughter and tears combined. She really felt that she deserved something as the she asked us with slurry words "Can I have a lolipop since I did so good". Well, although she couldn't have it, Rod & Katie brought her one in and she was smiling ear to ear.
She pulled through phase 1 with flying colors and is in great shape for the big day tomorrow. As for what little routine we've had here starting off due to the unknowns of each day, we've managed to keep pushing forward and making it work. Katie is fully in school of course so she has those commitments but was very clear that she was coming in on day 1 to see her little sister. Who would deny her that privilege right. She and Rod were in for a visit on night one. Rod is the one keeping Katie sorted out for her weekly school/sport commitments and Aiyana has been with me supporting Julie and will assist as required with helping Katie if need be. Rod & Aiyana are great and everyone is so supportive of one another and it's such a joy to all be together to help Julie and keep her spirit high.
Today, on day 2, we got good news after the Dr's did an xray on Julie that she gets to move up to the 3rd floor out of ICU. They have been great in there and Amanda/Katie have taken phenomenal care of Julie for us. We will probably see them late Wed. after the last surgery again. Julie told us she nodded of while the girls were doing a shift turnover and she wanted to give Katie a hug but she was gone when Julie roused from her slumber. I am sure she'll get another chance.
So, I hope that's a good take on where we're at, what's gone on, etc...I will have a good update for everyone on how she does tomorrow and maybe even have a picture on the new spine with a slight hint of metal. Thanks for sharing in our journey everyone, your kind thoughts and prayers are so appreciated by all of us we can't thank you enough.
Pat/Aiyana & Rod/Jessie & Julie/Katie
She pulled through phase 1 with flying colors and is in great shape for the big day tomorrow. As for what little routine we've had here starting off due to the unknowns of each day, we've managed to keep pushing forward and making it work. Katie is fully in school of course so she has those commitments but was very clear that she was coming in on day 1 to see her little sister. Who would deny her that privilege right. She and Rod were in for a visit on night one. Rod is the one keeping Katie sorted out for her weekly school/sport commitments and Aiyana has been with me supporting Julie and will assist as required with helping Katie if need be. Rod & Aiyana are great and everyone is so supportive of one another and it's such a joy to all be together to help Julie and keep her spirit high.
Today, on day 2, we got good news after the Dr's did an xray on Julie that she gets to move up to the 3rd floor out of ICU. They have been great in there and Amanda/Katie have taken phenomenal care of Julie for us. We will probably see them late Wed. after the last surgery again. Julie told us she nodded of while the girls were doing a shift turnover and she wanted to give Katie a hug but she was gone when Julie roused from her slumber. I am sure she'll get another chance.
So, I hope that's a good take on where we're at, what's gone on, etc...I will have a good update for everyone on how she does tomorrow and maybe even have a picture on the new spine with a slight hint of metal. Thanks for sharing in our journey everyone, your kind thoughts and prayers are so appreciated by all of us we can't thank you enough.
Pat/Aiyana & Rod/Jessie & Julie/Katie
Monday, 17 October 2011
1 Week to go!
It's 7 days prior to surgery # 1 for my little Julie. It's been a long time in the waiting and I thought it would be pretty easy to just take it all in but it's close and on my mind lots. I can imagine Julie is pretty nervous. Who wouldn't be I suppose. She is tough and she is a very healthy girl (minus the "S" in her back that should be and "I".....or "l") :-). Still, it would be pretty nerve racking. The surgeon is pretty calming to say the least. I think it's a pretty normal event for him. It's the rest of us that don't do this 2 times per week. Wow!
She has all the data from last weeks pre-op. The staff have been good so far. Everyone is so calm like she's going in for a manicure! It will probably be weird knowing that after a 3-4 operation to "prep" the spine for her major surgery 2 days later, she will come to and have a day off prior to the big one. Be nice if it was one time under but I guess it is better for the surgical team to have it broken into two. We don't want them nodding off with like an hour to go. :-)
Well, not much else, I will keep y'all posted on how it's going.
She has all the data from last weeks pre-op. The staff have been good so far. Everyone is so calm like she's going in for a manicure! It will probably be weird knowing that after a 3-4 operation to "prep" the spine for her major surgery 2 days later, she will come to and have a day off prior to the big one. Be nice if it was one time under but I guess it is better for the surgical team to have it broken into two. We don't want them nodding off with like an hour to go. :-)
Well, not much else, I will keep y'all posted on how it's going.
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