Nigh-Night! Sweet dreams...
Monday, December 21, 2009
Blogging Break - Happy Holidays!
Going to put the blog to bed for a few nights and relish the fact that we've gotten through this phase and are onto the next... soon to be at home. Gonna hang out with the family and just take it and them all in. Thanks for tuning in and for all of your wonderful words of support. Have a very happy holiday everyone, and give your loved ones an extra hug and a squeeze this year... give 'em all one from us too!
Nigh-Night! Sweet dreams...
Nigh-Night! Sweet dreams...
Post-op Day #5 - "Sliding" into home soon!
A much better night's sleep for Kahlial. He was a bit restless for an hour or two mid-sleep, but no apparent nightmares like the previous evening. At one point he actually laughed in his sleep. Made Mama feel much better. :)
Met with Dr Mackenzie today. It was a good appt, got our questions answered. We even got Dr M to take a pic with Kahlial. Kahlial gave him a high-five and fist-bump. Nice to have them get a chance to interact just a bit without anything scary or painful going on. Dr M and his team aren't too worried about Kahlial's "lazy" left eye since he is able to direct the eye fully side to side, up, down, and all around. The nerve may have been stretched by the pin or it may just be the position of the halo pins pushing down a bit on the lid. Anyhow, will wait, watch, and hope to see both of his big brown eyes fully soon.
Kahlial did spike a touch of a temp this evening, so I'll be keeping an eye on that. His pin sites and incisions look great though. Can't see them through the steri-strips, but no drainage. Pin care is a cinch and Kial's been pretty great about it, better every time. It just involves using clean technique, one Q-tip per pin, with a bit of sterile saline. They say every other day for pin care, but I'm more comfortable with daily.
Today was a big day for physical therapy. As soon as he walked into their big room filled with mats, balls, trucks, trains, you name it... He wanted "down, down" to go play (good sign). He did pretty well sitting at a bench and attempting to play with trains for a bit, kicking a yoga ball, and standing or walking a little with our support. The standing and walking made him upset every time. We feel it's more from fear than pain.
Met another little person, same condition as Kahlial, while waiting to get some medical records printed at the hospital (Briana, 5 years, so incredibily outgoing and adorable). She was quite petite, smaller than Kahlial, and oh so sweet, sweet, sweet... until she showed as her "knuckle sandwich." Oh my gosh, her cuteness just multiplied with that little attitude and New Yorker accent to go with her knuckle sandwich, fist waving in front of her and finishing with a big grin. She had her halo, also by Dr Mackenzie, at about the same age as Kahlial. She has had more respiratory issues than Kahlial, as well as leg braces and other various surgeries. She was there getting a cast off her foot today. Her mom said that Briana doesn't remember a thing about her time in the halo... Hoping the same for Kahlial.
Kahlial's other new little friend, Jonathon, had his decompression today. Got word from his mom when she'd gotten word from the neurosurgeron that the surgery was done and it went well. Our positive thoughts and energy are with them tonight as they go through their first night in the PICU.
We went for a little walk to check out the RMcDH Christmas lights tonight (missed the big lighting while Kial was in the hospital). Kahlial was all bundled up and loving it, while we were freezing our putooties off! Then, we decorated Kahlial's halo with stickers of guitars, trains, and cars. He was so into it! He kept thanking me every time I'd put another one on. So polite, too cute!!
What absolutely made my day today though was when Kahlial told me he wanted to go down the slide in the RMcDH playroom. I was stunned that he asked, and even more stunned when he did it (me holding him the entire time of course)... Counting "1, 2, 3... Weeeee!" time and time again. I tell you what though, he is so darned heavy with that halo. Mama's gonna have some ripped arms and legs after these next three months, that and a broken back. I got a little lazy on the last trip to the top of the slide and used pretty much just the base of the vest to lift him to the top vs. using an arm under his bottom and an arm on the vest. He let me know real quick that this did not feel so grand. I know they say it's fine... but he says nope.
Gotta give a big shout out to Daisy (Kahlial's super sweet, super adorable friend from Ashland who went through this same ordeal at the beginning of the year) and her family for making such a fantastic "K" sand dollar Christmas tree ornament for their tree and for sending us all that good energy! You're the best! Last time we were here, Daisy was in her halo and helping Kahlial up to the slide. Now she's halo-free and doing great! We're looking forward to that time too... Eye on the prize!! We're going to start by "sliding" into home on Wednesday! Not looking forward to the flight so much, but definitely the arrival.
"Bye-bye Ronald McDonald! See you in a few months."
Met with Dr Mackenzie today. It was a good appt, got our questions answered. We even got Dr M to take a pic with Kahlial. Kahlial gave him a high-five and fist-bump. Nice to have them get a chance to interact just a bit without anything scary or painful going on. Dr M and his team aren't too worried about Kahlial's "lazy" left eye since he is able to direct the eye fully side to side, up, down, and all around. The nerve may have been stretched by the pin or it may just be the position of the halo pins pushing down a bit on the lid. Anyhow, will wait, watch, and hope to see both of his big brown eyes fully soon.
Kahlial did spike a touch of a temp this evening, so I'll be keeping an eye on that. His pin sites and incisions look great though. Can't see them through the steri-strips, but no drainage. Pin care is a cinch and Kial's been pretty great about it, better every time. It just involves using clean technique, one Q-tip per pin, with a bit of sterile saline. They say every other day for pin care, but I'm more comfortable with daily.
Today was a big day for physical therapy. As soon as he walked into their big room filled with mats, balls, trucks, trains, you name it... He wanted "down, down" to go play (good sign). He did pretty well sitting at a bench and attempting to play with trains for a bit, kicking a yoga ball, and standing or walking a little with our support. The standing and walking made him upset every time. We feel it's more from fear than pain.
Met another little person, same condition as Kahlial, while waiting to get some medical records printed at the hospital (Briana, 5 years, so incredibily outgoing and adorable). She was quite petite, smaller than Kahlial, and oh so sweet, sweet, sweet... until she showed as her "knuckle sandwich." Oh my gosh, her cuteness just multiplied with that little attitude and New Yorker accent to go with her knuckle sandwich, fist waving in front of her and finishing with a big grin. She had her halo, also by Dr Mackenzie, at about the same age as Kahlial. She has had more respiratory issues than Kahlial, as well as leg braces and other various surgeries. She was there getting a cast off her foot today. Her mom said that Briana doesn't remember a thing about her time in the halo... Hoping the same for Kahlial.
Kahlial's other new little friend, Jonathon, had his decompression today. Got word from his mom when she'd gotten word from the neurosurgeron that the surgery was done and it went well. Our positive thoughts and energy are with them tonight as they go through their first night in the PICU.
We went for a little walk to check out the RMcDH Christmas lights tonight (missed the big lighting while Kial was in the hospital). Kahlial was all bundled up and loving it, while we were freezing our putooties off! Then, we decorated Kahlial's halo with stickers of guitars, trains, and cars. He was so into it! He kept thanking me every time I'd put another one on. So polite, too cute!!
What absolutely made my day today though was when Kahlial told me he wanted to go down the slide in the RMcDH playroom. I was stunned that he asked, and even more stunned when he did it (me holding him the entire time of course)... Counting "1, 2, 3... Weeeee!" time and time again. I tell you what though, he is so darned heavy with that halo. Mama's gonna have some ripped arms and legs after these next three months, that and a broken back. I got a little lazy on the last trip to the top of the slide and used pretty much just the base of the vest to lift him to the top vs. using an arm under his bottom and an arm on the vest. He let me know real quick that this did not feel so grand. I know they say it's fine... but he says nope.
Gotta give a big shout out to Daisy (Kahlial's super sweet, super adorable friend from Ashland who went through this same ordeal at the beginning of the year) and her family for making such a fantastic "K" sand dollar Christmas tree ornament for their tree and for sending us all that good energy! You're the best! Last time we were here, Daisy was in her halo and helping Kahlial up to the slide. Now she's halo-free and doing great! We're looking forward to that time too... Eye on the prize!! We're going to start by "sliding" into home on Wednesday! Not looking forward to the flight so much, but definitely the arrival.
"Bye-bye Ronald McDonald! See you in a few months."
Sunday, December 20, 2009
Post-op Day #4 - RMcDH
First night back at the Ronald McDonald House, we made the mistake of going to just Tylenol a little too early I think. Kial was quite restless through the night, waking up with "No, no, no!" nightmares a few times. He had to hold on to Mama's hair the entire night and could never quite get comfortable. Gave him Lortab when he came due for more pain meds and he slept well after that. Learned our lesson, Tylenol seems to do the job during the day, but definitely Lortab before bed for a couple more days at least.
Kial woke up and asked for "neck brace, Mama." Felt so bad that we couldn't just put him in his old brace and go play before breakfast. Once he realized that he was still in his halo, he started asking to get "Out, out!" then began to cry. Broke our hearts. He needed alot of extra snuggling today which we were happy to provide. Eventually he came around and had some fun playing with his new little friend, Jonathan who is having decompression surgery tomorrow (His mom found out that the halo wasn't going to be needed, good for them!). At the end of the evening he had a great time blowing bubbles with MeMaw and reading Clifford (the big red dog).
Kial woke up and asked for "neck brace, Mama." Felt so bad that we couldn't just put him in his old brace and go play before breakfast. Once he realized that he was still in his halo, he started asking to get "Out, out!" then began to cry. Broke our hearts. He needed alot of extra snuggling today which we were happy to provide. Eventually he came around and had some fun playing with his new little friend, Jonathan who is having decompression surgery tomorrow (His mom found out that the halo wasn't going to be needed, good for them!). At the end of the evening he had a great time blowing bubbles with MeMaw and reading Clifford (the big red dog).
Saturday, December 19, 2009
We've busted out!
SEE PICS ABOVE FROM TODAY (DAY #3 POST-OP).
Well, we've got a serious ROCKSTAR on our hands! Just 72 hours post-op, we were discharged from the hospital and are back at our home away from home... The Ronald McDonald House. Initially wasn't sure we were ready for it, but as we all stretch out and relax here in our room we're sure glad to be here. Any change just feels like progress towards home.
Kahlial had one short bout with pain last night, distressed Papa a bit, but slept well overall. We got straight down to business this AM. Dr Mackenzie took his dressings off today. Kial certainly was not a fan of that, but Dr M was pretty gentle. Both neck and hip sites look good, multiple steri-strips remain. Betsy (PT) helped us get him into a chair, then standing with a walker... sort of. He wore out very quickly (in just seconds really) and started to lean forward and lose strength. Though he did put some weight onto his feet momentarily. We then checked out Kial's fit in the carseat, not great, but it'll do. We're going to be trying to avoid car rides anyhow (Not looking particularly forward to the flight, but it's means to a great Christmas end and this carseat will help us get there.) Completed the day with a nice trip around the hospital in his stroller and a mini gift opening session for our little Rockstar.
So very proud of him. Saddens me to watch him have to go through any of this, even though I know he doesn't know any different. Just wish he didn't have to know pain and doctors and hospitals so well. I feel fortunate to be a participant in his life. Pretty amazing little individual... brave, resilient, beautiful, smily, happy boy with a touch of attitude and a great little sense of humor... Polite to boot! Not a big fan of "hellos" right now and still likes "no" quite a bit, but they can poke and prod him and he will still say "Thank you," give them high-fives, fist-bumps, and blow kisses afterward. Must say that his favorite thing is to say "Bye-Bye" though, understandably so.
We had to push Kahlial and all our stuff (lots of "stuff") in his stroller and a wagon in quite a bit of snow to get to the RMcDH. It started snowing last night and we've gotta be up to a good foot or more now and still coming down. Kind of a cool outside adventure actually... Well, it's "cool" so long as we are able to get back to the hospital on Monday and Tuesday, then fly out on Wednesday.
One thing that the parents of other kids having gone through this ordeal or other such procedures can appreciate is that.... KAHLIAL HAD A B.M. TODAY, YAY!!!! Constipation and even impaction is often an issue after all the pain meds, decreased mobility, etc. Had been giving him a stool softener and/or laxative from the moment he could take oral meds but had been unsuccessful right up until giving a suppository about a half-an-hour before discharge. I think it's going to be an ongoing concern, but happy to have the first one behind him, literally. :)
One other concern is still his left eye. He's not complaining of pain anymore, but it appears a bit "lazy." Hoping that one of those pins is not causing real damage to a nerve. Holding out for it just being the pin placement, since the pins on that side are a bit lower. Maybe it's just pushing the lid down. (Sidenote: The perfectionist in me is totally bothered by the fact that the halo is "off-kilter" and angling up to his left. I seriously can't think about it or it totally gets me!) Thankfully, being "off-kilter" on the outside does not mean it's "off-kilter" on the inside and it doesn't affect the position, healing, and recovery from the fusion itself... just bugs me.
It's apparent that it is going to take a good bit of time before Kial can support himself in any one position, sitting, standing, or walking. However, he is such a champ with being lifted, carried, strolled, set upright, and side-lying. Side-lying is pretty crazy to see initially, being suspended like that, but he seems to kinda like it. Tummy-time isn't happening though. He's so top heavy that we can't manage to weight his bottom half down enough to keep his face off the floor or bed. Have to work on figuring that one out.
Kahlial has seriously blown us away with his recovery thus far and I'm sure he'll continue to do so... Just the kinda kid he is :) Although we don't like to witness his pain, it allows us to see his strength and character... Got alot of it! I am one very proud Mama, and I've got one very proud Papa and MeMaw right here beside me. :)
Oh yeah, just afer we returned to RMcDH, I met a woman and her son with Achondroplasia (the most common form of dwarfism). Her son is now 3 yrs old and still not walking. She told me that she had an appt with Mackenzie yesterday, as well as diagnostics. Apparently she received a call today saying that her son needed immediate surgery due to the severity of his foramen magnum stenosis (narrowing of the spinal canal). She is anticipating a decompression and halo immobilization as well, not sure on whether or not fusion will be necessary. Anyhow, it was great to be able to let her and her son meet Kahlial and talk a bit about the process, as well as confirm her faith in the surgeons here. Not sure if it's better not to have time to think too much about the surgery, or worse to not have time to think about the surgery. Regardless I wish her son a safe surgery and record recovery as well.
Well, we've got a serious ROCKSTAR on our hands! Just 72 hours post-op, we were discharged from the hospital and are back at our home away from home... The Ronald McDonald House. Initially wasn't sure we were ready for it, but as we all stretch out and relax here in our room we're sure glad to be here. Any change just feels like progress towards home.
Kahlial had one short bout with pain last night, distressed Papa a bit, but slept well overall. We got straight down to business this AM. Dr Mackenzie took his dressings off today. Kial certainly was not a fan of that, but Dr M was pretty gentle. Both neck and hip sites look good, multiple steri-strips remain. Betsy (PT) helped us get him into a chair, then standing with a walker... sort of. He wore out very quickly (in just seconds really) and started to lean forward and lose strength. Though he did put some weight onto his feet momentarily. We then checked out Kial's fit in the carseat, not great, but it'll do. We're going to be trying to avoid car rides anyhow (Not looking particularly forward to the flight, but it's means to a great Christmas end and this carseat will help us get there.) Completed the day with a nice trip around the hospital in his stroller and a mini gift opening session for our little Rockstar.
So very proud of him. Saddens me to watch him have to go through any of this, even though I know he doesn't know any different. Just wish he didn't have to know pain and doctors and hospitals so well. I feel fortunate to be a participant in his life. Pretty amazing little individual... brave, resilient, beautiful, smily, happy boy with a touch of attitude and a great little sense of humor... Polite to boot! Not a big fan of "hellos" right now and still likes "no" quite a bit, but they can poke and prod him and he will still say "Thank you," give them high-fives, fist-bumps, and blow kisses afterward. Must say that his favorite thing is to say "Bye-Bye" though, understandably so.
We had to push Kahlial and all our stuff (lots of "stuff") in his stroller and a wagon in quite a bit of snow to get to the RMcDH. It started snowing last night and we've gotta be up to a good foot or more now and still coming down. Kind of a cool outside adventure actually... Well, it's "cool" so long as we are able to get back to the hospital on Monday and Tuesday, then fly out on Wednesday.
One thing that the parents of other kids having gone through this ordeal or other such procedures can appreciate is that.... KAHLIAL HAD A B.M. TODAY, YAY!!!! Constipation and even impaction is often an issue after all the pain meds, decreased mobility, etc. Had been giving him a stool softener and/or laxative from the moment he could take oral meds but had been unsuccessful right up until giving a suppository about a half-an-hour before discharge. I think it's going to be an ongoing concern, but happy to have the first one behind him, literally. :)
One other concern is still his left eye. He's not complaining of pain anymore, but it appears a bit "lazy." Hoping that one of those pins is not causing real damage to a nerve. Holding out for it just being the pin placement, since the pins on that side are a bit lower. Maybe it's just pushing the lid down. (Sidenote: The perfectionist in me is totally bothered by the fact that the halo is "off-kilter" and angling up to his left. I seriously can't think about it or it totally gets me!) Thankfully, being "off-kilter" on the outside does not mean it's "off-kilter" on the inside and it doesn't affect the position, healing, and recovery from the fusion itself... just bugs me.
It's apparent that it is going to take a good bit of time before Kial can support himself in any one position, sitting, standing, or walking. However, he is such a champ with being lifted, carried, strolled, set upright, and side-lying. Side-lying is pretty crazy to see initially, being suspended like that, but he seems to kinda like it. Tummy-time isn't happening though. He's so top heavy that we can't manage to weight his bottom half down enough to keep his face off the floor or bed. Have to work on figuring that one out.
Kahlial has seriously blown us away with his recovery thus far and I'm sure he'll continue to do so... Just the kinda kid he is :) Although we don't like to witness his pain, it allows us to see his strength and character... Got alot of it! I am one very proud Mama, and I've got one very proud Papa and MeMaw right here beside me. :)
Oh yeah, just afer we returned to RMcDH, I met a woman and her son with Achondroplasia (the most common form of dwarfism). Her son is now 3 yrs old and still not walking. She told me that she had an appt with Mackenzie yesterday, as well as diagnostics. Apparently she received a call today saying that her son needed immediate surgery due to the severity of his foramen magnum stenosis (narrowing of the spinal canal). She is anticipating a decompression and halo immobilization as well, not sure on whether or not fusion will be necessary. Anyhow, it was great to be able to let her and her son meet Kahlial and talk a bit about the process, as well as confirm her faith in the surgeons here. Not sure if it's better not to have time to think too much about the surgery, or worse to not have time to think about the surgery. Regardless I wish her son a safe surgery and record recovery as well.
Friday, December 18, 2009
Special Thanks!
We would like to thank each and every one of you for all of the love and support you've shown Kahlial and our family in preparation for, during, and after this venture. Sorry we have not yet responded to posts and emails individually. However, please know that each and every post touches us deeply, comforts us, and reminds us that we are not alone. There are special notes at the bottom of this blog for those of you reading this that deserve an EXTRA special thanks... You know who you are, or at least you should. :)
One of those people is Kahlial's Great Aunt, MaryAnn Dickey. This pic of Kial (more pics below) lying on his side shows just one of many of the intricate true "labors of love" that she made for this journey... his halo clothes. Her ability and generosity is astounding. The nurses on the pediatric unit were so impressed that they went showing the shirts all around to the other staff and units saying that they've seen others, but none that looked so great and worked so well (I think they've got a job here for you MaryAnn if you decide retirement isn't for you!? :) They are fitting and working perfectly. Thank you.
Post-op Day #2 - Great Day!
SEE PICS ABOVE FROM TODAY.
Practically no "downs" today! EVERYONE got a decent night sleep last night. We started our day with the usual "parade of white-coats." Kahlial's pain has been totally controlled. He complains of his "leg hurt" occasionally, but still does so well. His IV fluid was D/C'd, so we're down to just one saline locked IV and no cords and wires... FREEDOM! We even got him into our stroller with PT and took a walk to see the fabulous electric train they have here at the hospital. There are also a number of people in various areas of the hospital whose hearts Kahlial has won over. They're always asking for updates, so we thought we'd take Kahlial right to them for today's report. Everyone has been so very sweet here.
Our PT, Betsy, and Dr Mackenzie agreed today that the vest was digging into Kial's legs too much when sitting and needed adjustment. We were looking to possibly cut and buff the bottom of the vest to allow more room for sitting. After talking to Dr Mackenzie further, it looked like we were going to end up having to remove the front of the vest which we agreed would be quite traumatic, especially so soon after surgery. Mackenzie's suggestion was to wait until Monday to do the trimming. This sounded great until speaking more with PT and considering the impact on his mobility progression, since most kiddos do better with sitting before standing or attempting to walk. If he isn't comfortable sitting it may set back his confidence and ability to get to the next steps. Anyhow, we went to visit our favorite guy in the prosthetics and orthotics dept (Ronald) and he had the perfect solution... He ended up being able to loosen the rods (makes me nervous, but I trust Ron) and moving the whole front of the vest up. We thought the vest seemed pretty low on his chest in the beginning, so it totally worked out. The vest looks to fit perfectly and the pressure is now relieved from his thighs and we're ready to "go to work."
From there, our day just got better and better. We strolled him all over the hospital, then went back to the room for a nice long nap. During Kahlial's nap we met Dr Mackenzie's social worker. She was super! She brought as a carseat for travel home (may or may not work, but we'll figure that out with PT tomorrow). She even offered to store our current carseat in her office until we returned in March for halo removal... HUGE! Would be so nice not to lug two carseats home, just to turn around and lug them both right back in a few months. Which reminds me...
NOTE TO MEGAN: I've got to give a shout out to our PT at home, Megan, as well as Shriners for helping us figure out additional equipment (walker, bathing station, seat, and table) ahead of time... Again, HUGE! So thankful not to be lugging all those items home from here. Looks like our stroller is going to fit well enough to work in place of a wheelchair, very nice.
We had a visit with Dr Mackenzie's nurse practitioner, Colleen, during K's nap. They (the orthopedic team) feel Kahlial's doing well enough from their perspective that he can be discharged TOMORROW! I was initially a little excited about the prospect, but now I have some mixed feelings. Not able to get outpatient PT on the weekends. If we were still in the hospital we'd be working with folks daily to progress his mobility. If we're discharged, then we're on our own until Monday. Also, we still haven't gone over the pin care. We'll see.
We've gotten pretty comfortable with maneuvering him, now that his pain is controlled and he's not quite so freaked out about being moved around. Still wondering how sitting totally upright, standing and walking is going to go over. Tell you what though, he has been absolutely amazing since his nap. He woke up and said he was "hungy" for the first time. He's eaten two more times since then and been drinking well. He's been moved around LOTS by us, placed completely on both sides, on his tummy on top of Papa's tummy, even asked to get "down" (This experience wasn't quite what he expected, but he tolerated being held/suspended in a semi-standing position). That's our boy!
It really does feel like our boy is coming back to us. Although today was the first time we all truly got a look at the back of his shaved and swollen little head... a bit of a shocker. We decided to let Kahlial see himself in the mirror. I was a bit nervous about this one. I didn't want it to scare him. Though he'd gotten to see the little girl from the RMcDH who'd had her surgery with Mackenzie right after him. She was in her halo (with traction) and he wasn't scared at all. He told her, "Bye Therese, Bye halo!" Poor little darling wasn't doing as well as Kahlial in the pain department though. We feel incredibly fortunate to have Kahlial in the state he's in and progressing so quickly.
Anyhow, we let him see himself in the mirror and we could not have gotten a better response... He gave himself a little grin and paused to look at himself awhile, then said, "Mama, Papa, Kial, halo" pointing out all the reflections he was seeing in the mirror. That's our boy... our hero! Always blowing us away by his strength and resilience!
Practically no "downs" today! EVERYONE got a decent night sleep last night. We started our day with the usual "parade of white-coats." Kahlial's pain has been totally controlled. He complains of his "leg hurt" occasionally, but still does so well. His IV fluid was D/C'd, so we're down to just one saline locked IV and no cords and wires... FREEDOM! We even got him into our stroller with PT and took a walk to see the fabulous electric train they have here at the hospital. There are also a number of people in various areas of the hospital whose hearts Kahlial has won over. They're always asking for updates, so we thought we'd take Kahlial right to them for today's report. Everyone has been so very sweet here.
Our PT, Betsy, and Dr Mackenzie agreed today that the vest was digging into Kial's legs too much when sitting and needed adjustment. We were looking to possibly cut and buff the bottom of the vest to allow more room for sitting. After talking to Dr Mackenzie further, it looked like we were going to end up having to remove the front of the vest which we agreed would be quite traumatic, especially so soon after surgery. Mackenzie's suggestion was to wait until Monday to do the trimming. This sounded great until speaking more with PT and considering the impact on his mobility progression, since most kiddos do better with sitting before standing or attempting to walk. If he isn't comfortable sitting it may set back his confidence and ability to get to the next steps. Anyhow, we went to visit our favorite guy in the prosthetics and orthotics dept (Ronald) and he had the perfect solution... He ended up being able to loosen the rods (makes me nervous, but I trust Ron) and moving the whole front of the vest up. We thought the vest seemed pretty low on his chest in the beginning, so it totally worked out. The vest looks to fit perfectly and the pressure is now relieved from his thighs and we're ready to "go to work."
From there, our day just got better and better. We strolled him all over the hospital, then went back to the room for a nice long nap. During Kahlial's nap we met Dr Mackenzie's social worker. She was super! She brought as a carseat for travel home (may or may not work, but we'll figure that out with PT tomorrow). She even offered to store our current carseat in her office until we returned in March for halo removal... HUGE! Would be so nice not to lug two carseats home, just to turn around and lug them both right back in a few months. Which reminds me...
NOTE TO MEGAN: I've got to give a shout out to our PT at home, Megan, as well as Shriners for helping us figure out additional equipment (walker, bathing station, seat, and table) ahead of time... Again, HUGE! So thankful not to be lugging all those items home from here. Looks like our stroller is going to fit well enough to work in place of a wheelchair, very nice.
We had a visit with Dr Mackenzie's nurse practitioner, Colleen, during K's nap. They (the orthopedic team) feel Kahlial's doing well enough from their perspective that he can be discharged TOMORROW! I was initially a little excited about the prospect, but now I have some mixed feelings. Not able to get outpatient PT on the weekends. If we were still in the hospital we'd be working with folks daily to progress his mobility. If we're discharged, then we're on our own until Monday. Also, we still haven't gone over the pin care. We'll see.
We've gotten pretty comfortable with maneuvering him, now that his pain is controlled and he's not quite so freaked out about being moved around. Still wondering how sitting totally upright, standing and walking is going to go over. Tell you what though, he has been absolutely amazing since his nap. He woke up and said he was "hungy" for the first time. He's eaten two more times since then and been drinking well. He's been moved around LOTS by us, placed completely on both sides, on his tummy on top of Papa's tummy, even asked to get "down" (This experience wasn't quite what he expected, but he tolerated being held/suspended in a semi-standing position). That's our boy!
It really does feel like our boy is coming back to us. Although today was the first time we all truly got a look at the back of his shaved and swollen little head... a bit of a shocker. We decided to let Kahlial see himself in the mirror. I was a bit nervous about this one. I didn't want it to scare him. Though he'd gotten to see the little girl from the RMcDH who'd had her surgery with Mackenzie right after him. She was in her halo (with traction) and he wasn't scared at all. He told her, "Bye Therese, Bye halo!" Poor little darling wasn't doing as well as Kahlial in the pain department though. We feel incredibly fortunate to have Kahlial in the state he's in and progressing so quickly.
Anyhow, we let him see himself in the mirror and we could not have gotten a better response... He gave himself a little grin and paused to look at himself awhile, then said, "Mama, Papa, Kial, halo" pointing out all the reflections he was seeing in the mirror. That's our boy... our hero! Always blowing us away by his strength and resilience!
Thursday, December 17, 2009
Ups vs. Downs - Ups in the lead!
Pics: Figured out that unwrapping a present (with ANYTHING inside) is the new ticket to getting Kahlial to do what has to be done and to calming him down afterwards. He gave us our first fabulously fake smile :) after opening a little present... we'll take it!
What a day. Plenty of ups an downs. After the last post, we spoke with Physical Therapy (PT) and decided it was time to get Kahlial back into our arms. So, we started with the arterial line... definitely a DOWN. We had a lovely nurse taking care of Kahlial, though just finishing up her orientation and a bit unsure of herself. The A-line was taped up with the IV, so she asked for some assistance from a seasoned RN. They did fine until it came time to take the sutures out that held the A-line in place. The sutures were quite tight and close to Kial's skin so had trouble getting the scissors under the suture. Every time they'd attempt, it would pull at his skin and he would flip out. I was trying so hard to be patient, but really just wanted to get in and get it done myself. By being unsure and trying to be so gentle, it was prolonging the process and getting Kahlial really worked up. Finally I had to ask if they had a scalpel to use, would be so much easier to slip in and snip off. Just about the time I started getting a little hot, and a little sick to my stomach because Kahlial was so upset, they got it. Finally, thankfully, they got it, though it didn't end there...
Still they had to re-dress the remaining IV and take out his foley catheter, but nothing compared to those darn sutures. We changed his diaper for the first time and it quickly became evident that his right hip (graft site) was quite painful. Up to that point he'd only been complaining of the eye pain. Was hoping to hold off on pain meds in order to have him a bit more alert while sitting on my lap so that he could try to drink something (another "to do" before we could be transfered). However, it was obvious that pain meds were priority #1 right then. So we got some more IV Morphine, gave it a little time to take effect, then went for the transfer... another DOWN!
He gets quite scared whenever it is apparent that someone is going to try to move him at all. I can only imagine how he feels to be trapped in this giant contraption and not be able to move his head or neck. The pin sites are obviously painful and sensitive too. However, he does settle in pretty quickly once the move is complete. What a trooper! Our true hero. So he sat in my lap all propped up with pillows for a couple of hours and napped...
Until he got rudely awaken with an eye exam, dye and lights. Yet, it was reassuring to us to hear that there was no abrasion seen on either of Kial's eyes. Dr Lehman thought it possible that he may have had one that already resolved, or else it was never an eye injury to start. However, this now meant that it was possibly the pin impinging on a nerve causing the trouble and could possibly need to be removed... argh! Later on, K started complaining about both eyes, so we're now thinking and hoping maybe it's just the swelling and discomfort of the actual pin pressure from above. If that's the case, the pain should go away with the swelling and/or lessen as he becomes accustomed to the "situation."
Oh, forgot to mention that Dr Mackenzie stated that he felt good enough about the bone graft and fusion that there could almost be an argument for a different form of immobilization that did not include pins vs. the halo immobilization... I just thought, "Don't tell me this now!" (I know they couldn't really know until they got into the procedure). "But REALLY, do you have to tell me that this horrible contraption with the eight screws in my son's head could have possibly been avoided!? Seriously! Keep in to yourself." Sorry, a little frustration there. I just look at the next hours, days, weeks, and months and don't want to even know about the easier route that is no longer a possibility for us... "REALLY, Seriously!?"
Anyhow, moving forward... We all (Eric, MeMaw, and me) eventually ended up with showers back at the RMcDH. Truly therapeutic, we all agreed. Just stepping away and taking a deep breath of cold air on the walk over, and then washing away the stress from the previous day during a long, hot shower. I know mine was wonderful... Right up until the point that I called Eric to check in and make sure they'd given Kial his first oral dose of pain meds on time as requested before I left, and to ask if they got an order for the colace (stool softener).
When Eric picked up, I could hear the irritation in his voice and my son crying on the other end... "They still haven't gotten him his pain medicine." I was immediately tense, though I knew that Eric and MeMaw would absolutely handle it. I was just so irritated that I had just spoken with the RN and the resident and made it clear that we wanted to get him going on the PO (oral) pain medication Lortab (like Vicodin) straight away. At the time I spoke with them, K had gone 3-1/2 hours without anything and I was concerned that we needed to get SOMETHING on board now! Especially since PT was to come by and now help Eric maneuver Kial over to his lap for some Papa time.
Anyhow, by the time I got back to the hospital Kahlial was no longer out of his mind with pain. He was obviously worn out, but appeared comfortable. Happy to not walk in with him still crying in pain, and quite happy to hear we'd officially gotten a room upstairs. Bye-Bye PICU! Dr Mackenzie and his entourage of residents and fellows and his wonderful assistant, Colleen, were there and very happy with K's progress. They felt strongly that we might make it out of the hospital and over to the Ronald McDonald House by the end of the weekend. It all depends on keeping his pain managed as we and he try to adjust to movement in the halo. But we're on track to be home and settled for Christmas!!!
Kahlial is now drinking, eating a couple bites, and peeing (UP, UP, UP), gagging and near-vomiting his meds (DOWN), less painful with transfers (UP), itchy from one of the meds (DOWN), in a private room (UP, UP!) and has been playing with Mama's hair for comfort or watching Kung Fu Panda with Papa for the last couple of hours. Long post... Longer day, but UPs are in the lead!
Thank you all so much fo your wonderful messages. Many of you are making us get all choked up, but sure is nice to be teary happy, instead of teary scared or sad. Thank you again.
Orders to leave the PICU!
PIC: Here's an xray with all the fixins.
Kahlial had a pretty good night. Kept on the morphine every two hours. He complained of his left eye hurting... Could be from the pressure of the prone position (face down) during surgery. Dr Mackenzie also said that it could be nerve pain from one of the pin sites. He stated that he could potentially remove one of the pins from the left side without affecting the integrity of the halo... not interested. Could also be residual discomfort from being super dilated for the eye exam. Hope it just takes care of itself. We'll see.
Overall his labs were good this morning. No longer acidotic, hemoglobin and hematocrit stable, still neutropenic, white count reasonable. I talked to the ICU Team in grand rounds today (when all the interns, residents, and an intensivist discuss each case and make decisions/orders regarding the patient's care). So nice of the nurse to ask if I wanted to participate. Listened to a resident give report, then added my own concerns. Beneficial ... Got a stool softener, opthalmalogy consult, arterial line DC'd, order for a clear diet (ADAT), and the biggie.... order to transfer!!! However, no beds available on the floor at present. Will have to wait and see if they ship anyone out this afternoon so that we can move in upstairs.
Pre-surgery view
This is a view of Kahlial's cervical spine prior to surgery. To orient you, to the left is the base of his skull, to the right is his face. This is a picture of a picture, so quality is poor. But right in the center of the picture, below the base of the skull you'll notice a little dark spot. This is the posterior portion of C1, the first cervical vertebrae. In the picture above this, you'll see that "spot" has been removed and the cables placed.
Wednesday, December 16, 2009
Ending the day on a positive note.
Had to post one last time on this post-surgery eve... Here's a pic of Eric, eyes a bit bloodshot, and suffering through a pretty uncomfortable position in order to hold the computer at a good height for Kahlial to be able to watch Bob the Builder. Kial's complaining of his left eye hurting, but otherwise the morphine schedule seems to be doing the trick for the hip, neck, head, etc, at the moment. Can't really ask for much more right now... surgery seemingly a success, pain managed, and good 'ol Bob the Builder. Well, I think we'd all like to ask for one more little thing. Maybe you can help...
NOTE TO TED AND DARCY AND ANYONE ELSE WHO'D LIKE TO HELP: Pop a cork, flip a tab, through back a shot, or sip some hot cocoa with attitude! Of course the drinks we would like at the moment are not allowed in-hospital, nor are they allowed at the Ronald McDonald House. Please celebrate on our behalf. Cheers!
Pain managed, brain mush.
It seems that the reason we were delayed in seeing Kahlial for about an hour was that he was definitely a little out of his mind with pain and confusion, mixed in with a bit of fear I'm sure. Apparently he was flailing his arms and reaching for his halo and nasal cannula. Sounds like it was making the nurses a bit nervous, especially with his areterial lines. They ended up restraining his itty-bitty arms. Once they finally got on top of his pain a bit, he started settling. He was still moaning and crying when we got to him, but he is now resting rather peacefully after his third full round of pain meds (Morphine 0.5 mg q 2 hr).
As much as we've seen the halos in person and in pics, it's still overwhelming when it's on your own kiddo. He also looks like a little pin cushion with needle pokes all up and down his arms and legs from the SEP monitoring. Then there's the scalp-job they do... should've just had his Aunt Ni-Ni (Kial's hair stylist) give him a mohawk before we left Oregon so it looked more like it's supposed to be that way. Didn't think they'd shave so much.
I knew that the "waterworks" were going to come on eventually. Once all the nurses and docs left the room and I got a chance to ask all of my "nursy" questions I turned into Mom again and it just hit... the whole day, just hit. Looking around the room, I saw a couple other watery eyes that it hit too. But, he's here. We're with him. He's breathing on his own. He's moving all of his extremities. I don't expect we'll be blessed with a smile for awhile, but we were each granted a "Mama" "Papa" and "MeMaw"... We'll take it! He's also given a shout out to Thomas the Train, Bob the Builder, and Lightning McQueen... not too concerned about his neuro status. That's definitely our boy in there.
A few minutes ago, he actually gave MeMaw a little wave to across the room, "Hi MeMaw!"... out of the blue, in his adorable little two-year-old voice. Absolutely crushing though when he says "Out, out Mama, out!" as though we can remove him from the device and snuggle. Then he repeats over and over "all done" and "see me" (which means "hold me").... kills us all. I already miss my snuggle bug and Papa misses his bedtime buddy.
The adrenalin has come and gone and what's left of my brain is a pile of mush. Thanks for tuning in and for all of the positive energy... please keep it coming as we start trying to move him about tomorrow and revisit pain management.
The O.R. is OVER! Next stop... pain.
Dr Mackenzie let us know that the surgery went well from his standpoint: grafting, cabling, fusing, and halo fixation. He let us know that Dr Campbell's part went well also: laminectomy and widening of the foramen. Apparently there were some abnormal responses recorded with the SSEP (testing for motor and sensory); however, changes during procedure are what they are really watching for and the responses remained the same throughout, meaning no apparent cord damage during procedure. Kial did end up needing a little more than a unit of blood during procedure. Again, we were told we need to follow-up on his newly diagnosed anemia.
Didn't get to talk to Anesthesia, but apparently it went well. They were actually able to extubate (take the endotracheal tube out that helped him breathe during surgery) prior to him going to the PICU. This is not always the case, so very happy about that. FYI to my RN friends: He arrived to the PICU a bit acidotic (metabolic acidosis actually with pH of 7.27, don't know what that's about). Will recheck in AM.
It took forever to get to the PICU to be with him. Eric gave me a hug while we were waiting and told me that my heart was racing. I'd done pretty darn good all through the procedure, but I was over it! It had been six hours since we'd seen him and it was time to lay my eyes on my boy. My heart WAS racing! It still ended up taking another full hour before we ever got to see him. But now, we've officially moved into the next phase and the O.R. is behind us! More later...
Exhale... Update received.
Nurse just let us know that Dr Mackenzie is currently placing the graft and that they did, in fact, use titanium cabling to assist with the fusion. As told by Dr Campbell in our pre-surgical visit, if the composition of Kial's vertebrae were not sufficient, they would possibly have to go with the bone graft only. Had this been the case, it would have likely meant additional time in the halo. Right now we are anticipating him being in the halo for approximately three months.
They should be closing the incision soon and we should get a report from Drs Mackenzie and Campbell, as well as the anesthesiologist.
Next stop.. PICU.
They should be closing the incision soon and we should get a report from Drs Mackenzie and Campbell, as well as the anesthesiologist.
Next stop.. PICU.
Waiting...
Well, we're a half-hour past the time they're supposed to round and provide updates. So we're trying to stay positive and assume that maybe they're close to completion and waiting to have a doc come talk to us instead of the circulating RN. It may be a bit before we post again. Kahlial will be going straight to the PICU, and we hope to follow to see him shortly thereafter. We'll be at his bedside (with hawk-eyes) for some time now. Will post again as soon as it's realistic. Will say that this blog has been a very welcome distraction. Eric is trying to distract himself with a movie on his computer. MeMaw is doing the same on the hospital computer (in between getting us coffees). We're all busy "in our own heads" with occasional breaks to check in on each other. We're good.... just really wanting this next update.
Here we go...
Pictures of Kahlial with his security blanket, watching Curious George while the Versed did it's job and we talked to the docs and nurses prior to surgery.
1000: We just received word that Kahlial has received his nitrous gas, IVs, arterial line (constant BP monitoring line) and the SSEP (somatosenesory evoked potentials) system is in place for constant monitoring of the spinal cord.
1030: Word that opthalmalogy has completed their exam. They will be coming out to discuss what was seen after they complete their next case.
1100: Halo is in place. Here we go....
1145: Dr Lehman, opthalmalogy just came out... Good news. Although he has some irregular coloration to his retina (Docs in Portland were somewhat concerned with this), she feels this irregularity is within normal limits and is simply a combination of Eric's and my pigmentation. They have been measuring Kahlial's myopia as
-4.75 to -5.00 (moderately nearsighted), though we have chosen to undercorrect with glasses prescription of -3.00. However, they have yet to be able to fully dilate those beautiful dark brown eyes to get a great view and good responses with refraction or exam. This time they gave multiple doses of "superdrops" and he is now apparently reading at -2.50 and -3.50. So glad we never increased his prescription to the
-5.00 that was last suggested. So we'll just keep him in his current prescription and continue to have exams every 6 months to watch for progressed myopia and/or retinal detachment.
1200: Word that Dr Campbell has begun the laminectomy (removal of the posterior portion of C1, the first cervical vertebrae).
I am so incredibly thankful for the consistent and timely updates from the circulating nurse.
NOTE TO THE TENEYCKES: Can't imagine how you all survived this process with Caden for almost 7 hours in procedure without any updates... simply cannot imagine.
Today's the day he walks away, in someone elses arms.
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LEFT: Picture from yesterday's final halo vest fitting, minus the bars and halo. Kial was not impressed to say the least. We kept telling him he was going to be getting a halo and vest just like his friend Caden. He would reply, "No Caden, No halo"... broke our hearts. However, last night he got to look at Caden's blogspot and Caden and his parents having fun (halo and all) and was a bit more receptive to the idea, pointing out which part was the halo and which part was the vest and saying "Fix neck, No more neck brace." It feels a bit like false advertising or something though when we try to tell him he's going to get a halo and no more neck brace, as though it's an upgrade.
RIGHT: A beautiful smile from our little sunshine just before going into pre-op.
We spoke with the opthalmalogist who will be doing a brief exam as soon as they get him sedated in order to fully view his retinal edges for tears, hole formation, etc (retinal detachment is another risk for those with SEDc). She will also be attempting to take some digital images of the eye for further evaluation and reference.
Spoke briefly with Dr Campbell, the neurosurgeon performing Kahlial's laminectomy (removal of the posterior portion of the first cervical vertebrae) as well as Dr Mackenzie, the orthopedic surgeon performing the posterior iliac crest graft (removing part of the bone and cancellus tissue from the back of his hip) for the fusion, as well as the cabling and halo fixation.
It is wellknown that many surgeons are, shall we say, "A very particular sort. They set themselves apart and some are even a bit godlike in their own minds, others minds too for that matter." Dr M is certainly in that mix and his "confidence" can rub on a person a bit at times. We asked simply, "How are you today?" and he responded with obvious annoyance stating that everyone always asks that question and that how he feels is irrelevant and being ill isn't an option and would never affect his performance, yada, yada (basically, surgeons don't get sick)... I kinda tuned out. Well, was thinking to myself that surgeon or not, no one gets a gauranteed pass on the H1N1, common cold, etc. It was too insignificant for me to reply, but a person would have to know that regardless, all a parent really wants or needs to hear is "I feel great and I'm going to care for our son as though he were my own"... or at minimum, "I feel good today and we're ready to go." However, he is the one we consider the best at what he does for our SED children. That's why we're here and I am appreciative of both of Kahlial's surgeons' expertise.
The nurses, anesthesia staff, housekeeping staff, you name it!... They are wonderful!!! We left our interaction with Dr M a touch chaffed. Then we walked down to the cafeteria and quickly turned a 180 when a gentlemen (we presume he works in the hospital somewhere) began speaking to us about what is good to eat here. Eric told him that we're gonna be here for a bit and figure we'll just start at the top of the menu and work our way down. We told him that we had just handed off our baby and it was no longer within our control. After getting our food and on our way to the cashier, the gentleman passed by us, tapped Eric on the shoulder and told him, "Your breakfast is on me" and just kept walking. He had gone and arranged for our meal to be paid. We were both stunned, speechless, and moved close to tears by his generosity in that moment... The perfect moment really. Again, wonderful people here.
0900: We just placed our baby in their hands (Possibly the most difficult part for me). You never feel like you've hugged and kissed enough or said "I love you to the moon" enough before your child is whisked away for a procedure, and it never really gets any easier. After some crying spells with his eye drop placement and intranasal meds, Kahlial was in a fairly blissful state as we watched him walk away in the nurses arms.
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