Kasey's xrays are looking slightly better each day. Today, his respiratory cultures came back with multiple bacteria growing so they are starting him on a different antibiotic. This could also be why his fever is still present and his chest xrays aren't showing much improvement. He has had 2 days of physical therapy sitting him up on the edge of the bed. They are weaning his high powered pain meds in hopes of getting him to be more awake and alert throughout the day and he really was alert today. Everyday is getting better, it's just going slower than originally predicted. Of course, the lung issue is something that was not anticipated. He is off the ventilator as of yesterday but they immediately put him on a bi-pap machine (which sort of looks like a c-pap mask that people wear who have apnea.) But he can be off of that more and more -- just using a nasal cannula for oxygen.
The docs are saying it will probably be another 5-7 days in the hospital but hopefully not many more nights spent in ICU. He is not as strong, but that seems like a given due to laying in bed all the time and the fact that he hasn't had any food since last Tuesday. Tomorrow will be a week with no food or drink.
So, tonight I just ask for prayers that his fever will subside, that his lungs will improve greatly and he will regain strength.
Thank you.
Monday, October 1, 2012
Saturday, September 29, 2012
Kasey Layne 9-29-12
I am pleased to report that today was....UNEVENTFUL!
Yes, it's too bad that he didn't get his ventilator out today. Yes, it's too bad that his lungs aren't totally cleared up and healthy enough to breathe on their own quite yet.
But it is wonderful that nothing new creeped up, he is in good spirits, constantly signing that he's hungry and thirsty and asking when he and I are outta here. He was even more alert today. The nurse said he is the best patient ever because most kids at his age who are on a vent have to be heavily sedated because they aren't compliant and are always yanking at their tubes. But they just tell him stuff and he listens to them. He is being so good for them. Usually he gives his nurses some heck. He really is filled with some supernatural peace and understanding beyond belief.
They had to give him two more units of blood today and fingers crossed that will be the last of his blood bank withdrawals. He listened to some music on his beloved IPOD today and his toes were a tappin'! He coughed up lots of yucky stuff today and the day nurse said his lungs sound better than they have since he got to the ICU. They take a chest xray every morning at 5:30 so hopefully tomorrow's will reveal that his productive coughing today means extubation tomorrow. They have cultured every possible excretion and so far no bacteria have grown. His fever seems to be dropping and as of tonight we can call it a low-grade fever. I like the sound of that!
He is still getting breathing treatments and every 4 hours his bed shakes, rattles, and rolls like the old hotel beds that required a quarter. That is to help loosen the secretions in his lungs to clear them out.
I required a little "mommy time-out" today as the reality of the last 3 days just hit me like a rock this morning. So when hubby and son got here today, they took me to lunch at RockBottom Brewery and then for a stroll along the 16th street mall while my mom and brother hung out with Kasey. Today was my brother's 23rd birthday so we got him a Zach Galifianakis T and a chicken that lays candy eggs :) It was good for a much needed laugh. I was in need of some off-color humor! I may need a few more mental health hours before our stay here is over. Tonight, I am grateful to all of you for your prayers and support. I very much prefer to be the one on the giving end but your support is a humbling reminder that God blesses us on the other side of the equation too.
Lots of love to you from the Christensen's.
Yes, it's too bad that he didn't get his ventilator out today. Yes, it's too bad that his lungs aren't totally cleared up and healthy enough to breathe on their own quite yet.
But it is wonderful that nothing new creeped up, he is in good spirits, constantly signing that he's hungry and thirsty and asking when he and I are outta here. He was even more alert today. The nurse said he is the best patient ever because most kids at his age who are on a vent have to be heavily sedated because they aren't compliant and are always yanking at their tubes. But they just tell him stuff and he listens to them. He is being so good for them. Usually he gives his nurses some heck. He really is filled with some supernatural peace and understanding beyond belief.
They had to give him two more units of blood today and fingers crossed that will be the last of his blood bank withdrawals. He listened to some music on his beloved IPOD today and his toes were a tappin'! He coughed up lots of yucky stuff today and the day nurse said his lungs sound better than they have since he got to the ICU. They take a chest xray every morning at 5:30 so hopefully tomorrow's will reveal that his productive coughing today means extubation tomorrow. They have cultured every possible excretion and so far no bacteria have grown. His fever seems to be dropping and as of tonight we can call it a low-grade fever. I like the sound of that!
He is still getting breathing treatments and every 4 hours his bed shakes, rattles, and rolls like the old hotel beds that required a quarter. That is to help loosen the secretions in his lungs to clear them out.
I required a little "mommy time-out" today as the reality of the last 3 days just hit me like a rock this morning. So when hubby and son got here today, they took me to lunch at RockBottom Brewery and then for a stroll along the 16th street mall while my mom and brother hung out with Kasey. Today was my brother's 23rd birthday so we got him a Zach Galifianakis T and a chicken that lays candy eggs :) It was good for a much needed laugh. I was in need of some off-color humor! I may need a few more mental health hours before our stay here is over. Tonight, I am grateful to all of you for your prayers and support. I very much prefer to be the one on the giving end but your support is a humbling reminder that God blesses us on the other side of the equation too.
Lots of love to you from the Christensen's.
Friday, September 28, 2012
Kasey Layne 9-28-12
This morning started out really rough. He was having some ventilator issues, respiratory therapy came in and tried some things, to no avail. Then the pulmonologist stopped in to talk long term stuff and the situation in the room quickly became an emergency. The pulmonologist left to get consent papers for an emergency bronchoscopy (the bronch was going to happen anyway, the emergency part...not so much). The floor doc said things might get dicey from there and I would need to leave the room after signing consent. I sat in the waiting room praying healing scriptures the entire time I was waiting. It felt like an eternity, but my husband said from the time I called and told him to get here to the time I called to tell him things were now ok it was only about half an hour. The breathing tube had kinked itself and no air was going in or out. They re-intubated him and didn't find anything alarming during the bronchoscopy. No swelling, no mucus, nothing worrisome. His lungs aren't healthy obviously, and he still has some atelectasis in his lower lobes but by the end of the day today, his lungs were sounding better and we are hopeful.
This was a setback in that now he has to be on the vent longer and in the ICU longer but praise God, nothing that has happened is hugely serious, just little setbacks. I will take those anyday. Although I do hope the worst is now behind us and we are going to begin moving forward tomorrow.
The rest of the day was just resting. Napping. Being thankful. And as much snuggling as we can do given that he's too big to pick up and hold! He's blowing kisses even though he has the vent in and my brother even got a 'peace out' sign from him tonight. He's signing that he's hungry, when's lunch, and his tummy is saying 'feed me'. Tomorrow he gets food. If they don't take the vent out they will at least start giving him nutrition through a tube. But he's hoping for some real food.
He is still fighting fevers. Please continue to pray that they will go away. They took him off the blood pressure meds and for the afternoon was more coherent than he has been so far. He had lots of visitors tonight and said he wanted to stay awake to see them rather than sleep. Physical therapy came and gave his legs a little work out. Hopefully tomorrow, if the vent comes out, he can try sitting up a bit. We are praying for a restful night for the both of us so we can hit it tomorrow with some forward movement. The swelling in his body has gone down after some Lasix and they are doing all kinds of stuff to get his lungs moving to shake stuff loose in there.
Thanks for continuing to pray. God really does have this and we all feel peace about it. Having faith is easy...it's being a mom that's hard -- watching our babies struggle...seeing too much of that in the ICU.
His mercies are new every morning.
This was a setback in that now he has to be on the vent longer and in the ICU longer but praise God, nothing that has happened is hugely serious, just little setbacks. I will take those anyday. Although I do hope the worst is now behind us and we are going to begin moving forward tomorrow.
The rest of the day was just resting. Napping. Being thankful. And as much snuggling as we can do given that he's too big to pick up and hold! He's blowing kisses even though he has the vent in and my brother even got a 'peace out' sign from him tonight. He's signing that he's hungry, when's lunch, and his tummy is saying 'feed me'. Tomorrow he gets food. If they don't take the vent out they will at least start giving him nutrition through a tube. But he's hoping for some real food.
He is still fighting fevers. Please continue to pray that they will go away. They took him off the blood pressure meds and for the afternoon was more coherent than he has been so far. He had lots of visitors tonight and said he wanted to stay awake to see them rather than sleep. Physical therapy came and gave his legs a little work out. Hopefully tomorrow, if the vent comes out, he can try sitting up a bit. We are praying for a restful night for the both of us so we can hit it tomorrow with some forward movement. The swelling in his body has gone down after some Lasix and they are doing all kinds of stuff to get his lungs moving to shake stuff loose in there.
Thanks for continuing to pray. God really does have this and we all feel peace about it. Having faith is easy...it's being a mom that's hard -- watching our babies struggle...seeing too much of that in the ICU.
His mercies are new every morning.
Thursday, September 27, 2012
Kasey Layne 9-26-12
Ok, so if you are following on Facebook you will already know most of this but I am doing this for those that don't have a facebook account and so I have the record of it.
We checked in at Presbyterian/St. Luke's Rocky Mountain Hospital for Children yesterday at 7am. Kasey was calm as a cucumber the whole time, he even let them put his I.V. in without so much as a wince. He is usually never calm when it comes to this kind of stuff which is how I know all the prayers worked and the Holy Spirit was right there in my boy giving him supernatural peace beyond understanding. He agreed with me that I was being a crybaby and he gave us his new "Darth Vader" impression before we left him. There were 2 Orthopedic surgeons, one PA, one neuromonitoring specialist who had direct access to a neurologist, and an anesthesiologist in on his case. The docs said we would have an 8-12 hour surgery from prepping to finish so we settled in for the long haul.
At 11am the nurse came out to let us know the surgery had just started. They had a hard time getting a central line put in below his clavicle because as the anesthesiologist put it "his anatomy is weird". So they ended up putting it in his neck. His vitals were stable through the entire procedure.
At 1pm Kasey was still doing well, they had just gotten him all opened up and were then putting the screws in. The screws go on each side of almost all the vertebrae. Afterwards we learned they put in approx 30 screws.
At 3pm They had installed about 1/3 of the screws.
At 5pm The docs had the screws in place and were going to move on to placing the rods -- afterwards they told us they fully expected this to be their final hour of surgery. But Kasey's body had other plans...he was hooked up to neuromonitoring to monitor all nerves in the body and when they were trying to place stuff, Kasey's brain would have a fit, so they would have to back up a few steps and try again, tweak some more. They tweaked a total of 6 times before the doc came out at the 13 hour mark to let us know that Kasey was holding up well, but that his spinal cord was being extra sensitive to the changes they were trying to make so they were having to move extremely slow.
At 10 pm things were the same and nothing much had changed, they were still just trying to get him as straight as his spinal cord would allow. And obviously, now already past the 12 hour mark,it would be even longer.
At 11:45 pm they were finally closing him up and told us they would be done by about 12:30.
Surgery, all said and done, start to finish, was 16 hours.
At 12:45 am on Sept. 27 the surgeons finally came out, told us everything looked good and that Kasey was well on his way to losing quality of life had no intervention happened. His curvature had progressed to 85 degrees just since last x-ray. They also noted that his blood sugar was 250 in surgery and ended up having to give him insulin so we should have him checked out once all of this settles out. Nothing pressing at the moment, just something to keep on the radar and monitor.
We finally made it to the Pediatric ICU floor and got to see Kasey at about 1:30 or 2. I was quickly losing track of time by then.
So he had a decent night, they were having a hard time keeping the optimal blood pressure, which is higher than normal because they want good pressures in his spine for optimal healing. And they said it's normal to run a fever after surgery especially a major surgery like this but the concern is obviously for infection so they are monitoring him closely.
This morning it is looking like he will have at least the rest of today on the ventilator. They have discovered something in his heart/lung area that they want to have checked out so in the next hour or so we will be heading to CT to get a scan. Please continue praying with us that it is nothing, that the blood sugar thing is nothing, and that his stats and labs will stabilize so he can get off the ventilator. He is dying to talk and have a drink of water.
I told him I was going to leave him with Uncle Josh this morning so I could go down the hall and shower and he gave me a little wave as I went. He isn't talking because of the vent but he will use small hand gestures and nod his head. He is extremely swollen in the face due to being face down for 16 hours and he looks a little beat up, but I still see his huge spirit shining through.
So, I am thanking God for his provisions thus far and believing that CT, blood sugar, and all else is already taken care of and a non-issue and would love for you to join in prayer and thanksgiving with me. I will post again when I know more.
Thank you for standing in agreement with us,
Cynthia
Here are the updates since I last posted: CT scan showed a partially collapsed lower right lung, so he will have to stay on the vent until tomorrow. They will give him breathing treatments to try and open the lung up and if that doesn't work, then he will need a bronchoscopy to get it opened up. They think maybe the main tube going into his right lung got a little kinked while laying on his tummy for so long. He will get another chest xray in the morning to check progress. His fever and other stats are holding steady, it's just that his surgery was so long it just wreaked havoc on his little body. Because of his scoliosis, his right lung is only about 2/3 the size it should be so he will be seeing a pulmonologist to be followed up for restrictive lung disease. He has been out of it most of the day, they are keeping him very sedated. They are also infusing plasma, clotting factors, and minerals because he lost half his blood volume during surgery. They transfused blood last night, but his plamsa and clotting factors aren't at sufficient levels yet. The doc is confident, though, that he will get off the vent tomorrow.
Pray with us that no bronchoscopy will be needed and that the breathing treatments will penetrate those closed off airways.
The humor of today is 1) My brother decided that with all of his facial swelling he now looks like Jonah Hill from the movie 21 Jump Street.
And 2) He has 3 small reddish marks that are caused from insufficient grounding of the cauterizing tool. There are pads that go on the patient to "ground" the welding/cauterizing thingy they use in surgery. Well...the ironic/funny part is that hubby, Kasey's daddy, designed the transformer in the cauterizing tool! So the very power that caused the marks was created by his own dad! Of course, Eric says that the power wasn't the problem but instead it was the grounding pads being insufficient ;) We know that but it is fun to razz him a bit. Anyway, that's it for tonight. I will post again tomorrow. Goodnight and thank you for your prayers.
We checked in at Presbyterian/St. Luke's Rocky Mountain Hospital for Children yesterday at 7am. Kasey was calm as a cucumber the whole time, he even let them put his I.V. in without so much as a wince. He is usually never calm when it comes to this kind of stuff which is how I know all the prayers worked and the Holy Spirit was right there in my boy giving him supernatural peace beyond understanding. He agreed with me that I was being a crybaby and he gave us his new "Darth Vader" impression before we left him. There were 2 Orthopedic surgeons, one PA, one neuromonitoring specialist who had direct access to a neurologist, and an anesthesiologist in on his case. The docs said we would have an 8-12 hour surgery from prepping to finish so we settled in for the long haul.
At 11am the nurse came out to let us know the surgery had just started. They had a hard time getting a central line put in below his clavicle because as the anesthesiologist put it "his anatomy is weird". So they ended up putting it in his neck. His vitals were stable through the entire procedure.
At 1pm Kasey was still doing well, they had just gotten him all opened up and were then putting the screws in. The screws go on each side of almost all the vertebrae. Afterwards we learned they put in approx 30 screws.
At 3pm They had installed about 1/3 of the screws.
At 5pm The docs had the screws in place and were going to move on to placing the rods -- afterwards they told us they fully expected this to be their final hour of surgery. But Kasey's body had other plans...he was hooked up to neuromonitoring to monitor all nerves in the body and when they were trying to place stuff, Kasey's brain would have a fit, so they would have to back up a few steps and try again, tweak some more. They tweaked a total of 6 times before the doc came out at the 13 hour mark to let us know that Kasey was holding up well, but that his spinal cord was being extra sensitive to the changes they were trying to make so they were having to move extremely slow.
At 10 pm things were the same and nothing much had changed, they were still just trying to get him as straight as his spinal cord would allow. And obviously, now already past the 12 hour mark,it would be even longer.
At 11:45 pm they were finally closing him up and told us they would be done by about 12:30.
Surgery, all said and done, start to finish, was 16 hours.
At 12:45 am on Sept. 27 the surgeons finally came out, told us everything looked good and that Kasey was well on his way to losing quality of life had no intervention happened. His curvature had progressed to 85 degrees just since last x-ray. They also noted that his blood sugar was 250 in surgery and ended up having to give him insulin so we should have him checked out once all of this settles out. Nothing pressing at the moment, just something to keep on the radar and monitor.
We finally made it to the Pediatric ICU floor and got to see Kasey at about 1:30 or 2. I was quickly losing track of time by then.
So he had a decent night, they were having a hard time keeping the optimal blood pressure, which is higher than normal because they want good pressures in his spine for optimal healing. And they said it's normal to run a fever after surgery especially a major surgery like this but the concern is obviously for infection so they are monitoring him closely.
This morning it is looking like he will have at least the rest of today on the ventilator. They have discovered something in his heart/lung area that they want to have checked out so in the next hour or so we will be heading to CT to get a scan. Please continue praying with us that it is nothing, that the blood sugar thing is nothing, and that his stats and labs will stabilize so he can get off the ventilator. He is dying to talk and have a drink of water.
I told him I was going to leave him with Uncle Josh this morning so I could go down the hall and shower and he gave me a little wave as I went. He isn't talking because of the vent but he will use small hand gestures and nod his head. He is extremely swollen in the face due to being face down for 16 hours and he looks a little beat up, but I still see his huge spirit shining through.
So, I am thanking God for his provisions thus far and believing that CT, blood sugar, and all else is already taken care of and a non-issue and would love for you to join in prayer and thanksgiving with me. I will post again when I know more.
Thank you for standing in agreement with us,
Cynthia
Here are the updates since I last posted: CT scan showed a partially collapsed lower right lung, so he will have to stay on the vent until tomorrow. They will give him breathing treatments to try and open the lung up and if that doesn't work, then he will need a bronchoscopy to get it opened up. They think maybe the main tube going into his right lung got a little kinked while laying on his tummy for so long. He will get another chest xray in the morning to check progress. His fever and other stats are holding steady, it's just that his surgery was so long it just wreaked havoc on his little body. Because of his scoliosis, his right lung is only about 2/3 the size it should be so he will be seeing a pulmonologist to be followed up for restrictive lung disease. He has been out of it most of the day, they are keeping him very sedated. They are also infusing plasma, clotting factors, and minerals because he lost half his blood volume during surgery. They transfused blood last night, but his plamsa and clotting factors aren't at sufficient levels yet. The doc is confident, though, that he will get off the vent tomorrow.
Pray with us that no bronchoscopy will be needed and that the breathing treatments will penetrate those closed off airways.
The humor of today is 1) My brother decided that with all of his facial swelling he now looks like Jonah Hill from the movie 21 Jump Street.
And 2) He has 3 small reddish marks that are caused from insufficient grounding of the cauterizing tool. There are pads that go on the patient to "ground" the welding/cauterizing thingy they use in surgery. Well...the ironic/funny part is that hubby, Kasey's daddy, designed the transformer in the cauterizing tool! So the very power that caused the marks was created by his own dad! Of course, Eric says that the power wasn't the problem but instead it was the grounding pads being insufficient ;) We know that but it is fun to razz him a bit. Anyway, that's it for tonight. I will post again tomorrow. Goodnight and thank you for your prayers.
Tuesday, August 21, 2012
Update on Kasey's Surgery
Remember the "on again/off again" thing? It has arrived again :) We still have a surgery date but not Aug. 29th...it's now Aug. 30th. And now instead of doing the two surgeries together, only the spinal cord surgery will happen that day. The spinal fusion is now scheduled for Sept. 26th. The three docs got together and decided that research shows doing the two surgeries together increases the chances of complications. They were trying to lessen the amount of times Kasey had to go under the knife but in this case, it's not in his best interest due to the increased risk of complications.
The tethered cord release surgery will be around 90 minutes long and will only require 1-2 days in the hospital. Then the 4 week recovery before the fusion surgery. I have really, really just surrendered myself to the future knowing that God is in full control so my weepiness is subsiding and I am feeling hopeful and faith-filled. Every surgery Kasey has had, every time it seemed the odds were against him, this is the point I have gotten to and honestly, for me, a control freak, it's really nice to rest in the shadow of His wings and live in His strength. I was really drained!
Kasey, on the other hand, has had nothing but excitement for his surgery. He says he is tired of having back pain and ready to feel better. He keeps asking people to come for his surgery and if they are excited for it! Great-grandpa and grandma will be here Saturday for the first surgery and are coming back for the second also -- we are all excited for that! We are blessed with all the support we have as a family and also the amount of families from around the world that have reached out to us to share their children's journey down the same road. There is so much comfort in hearing similar stories and what it looks like from the other side of surgery.
Also, in my last post I forgot to mention our curvature degrees. This won't mean much to most of you but I am also using this blog as a way of organizing most pertinent info to keep in his medical records book (1 of 3 -- 3 ring binders full of med records). His thoracic curve is now at 78.9 degrees and his lumbar curve measures 43 degrees. I will post pics as we get closer to his big day to show the progression of his curve and for comparison after surgery. Another thing I forgot to mention in the last post was that he also has some kyphosis -- which is why he is hunched forward. The surgery should also fix that. He will be learning to walk all over again after surgery because the way he walks is compensatory for his curvature and what works best for him. With rods that attach to his pelvis, he will need to learn a whole new way to balance and manage himself. I expect that he will back up and dancing to the Michael Jackson experience (his fav!!) video game in no time!
Thanks for continuing to pray for him, our family, and our surgeons -- we really do feel the peace of prayers around here :)
The tethered cord release surgery will be around 90 minutes long and will only require 1-2 days in the hospital. Then the 4 week recovery before the fusion surgery. I have really, really just surrendered myself to the future knowing that God is in full control so my weepiness is subsiding and I am feeling hopeful and faith-filled. Every surgery Kasey has had, every time it seemed the odds were against him, this is the point I have gotten to and honestly, for me, a control freak, it's really nice to rest in the shadow of His wings and live in His strength. I was really drained!
Kasey, on the other hand, has had nothing but excitement for his surgery. He says he is tired of having back pain and ready to feel better. He keeps asking people to come for his surgery and if they are excited for it! Great-grandpa and grandma will be here Saturday for the first surgery and are coming back for the second also -- we are all excited for that! We are blessed with all the support we have as a family and also the amount of families from around the world that have reached out to us to share their children's journey down the same road. There is so much comfort in hearing similar stories and what it looks like from the other side of surgery.
Also, in my last post I forgot to mention our curvature degrees. This won't mean much to most of you but I am also using this blog as a way of organizing most pertinent info to keep in his medical records book (1 of 3 -- 3 ring binders full of med records). His thoracic curve is now at 78.9 degrees and his lumbar curve measures 43 degrees. I will post pics as we get closer to his big day to show the progression of his curve and for comparison after surgery. Another thing I forgot to mention in the last post was that he also has some kyphosis -- which is why he is hunched forward. The surgery should also fix that. He will be learning to walk all over again after surgery because the way he walks is compensatory for his curvature and what works best for him. With rods that attach to his pelvis, he will need to learn a whole new way to balance and manage himself. I expect that he will back up and dancing to the Michael Jackson experience (his fav!!) video game in no time!
Thanks for continuing to pray for him, our family, and our surgeons -- we really do feel the peace of prayers around here :)
Monday, August 13, 2012
Kasey's Scoliosis Journey
My son Kasey turns 14 on December 14th. His scoliosis was discovered just after his first birthday. It was of little consequence back then compared to his other health struggles. They were giving him an entire body work-up due to uncontrollable seizures when they discovered the scoliosis and a hole the size of a quarter in his little heart. At that time, the hole was the immediate concern because it was so large and even having a bowel movement could have caused him a heart attack. That was immediately fixed and we began monitoring his back. All these years he has been in multiple body casts and braces for months at a time to try to control the curvature.
In 2002, K had a partial spinal fusion in his lumbar area. They added cadaver bone to a vertebrae that was triangular-shaped and he went into a body cast immediately after for a few months. He was given a wheelchair and we were told not to let him walk for a while. So, I would pull the wheelchair up to our basketball hoop (because b-ball was his fav!) and my other son, Noah, just a year and a half old would fetch balls for him. I believe we only made it about a week before K figured out how to wiggle out of his chair and I found him standing up playing ball WITH Noah and that was the end of keeping him down. Same with his open heart surgery. Just a few days post-op, he was standing up in his hospital crib shaking the side of it! He sure is a trooper and if you know him, he's got a wonderful attitude so I'm sure that his upcoming surgery will be no different.
Since 2002, it has only been body casts, braces, and frequent doctor visits to closely monitor his growth. In late 2008 we got news that it was time to address surgery. We did everything needed and even drove through a massive snow storm to Salt Lake City Shriner's for the surgery. When we met with doctors however, they said it was a no-go. And we've been on the "surgery or not" roller coaster ever since. Some of you have been on that with us and probably got tired of us getting all ready for surgery only to say it was cancelled. It was very emotionally taxing, and honestly, it will be a relief not to have this major surgery looming over us anymore. We never could totally understand why surgery kept getting cancelled. Now we plainly see it was because no one really, really knew what the best plan of action was.
Last year in December we met with K's docs to discuss recent results of his spine MRI and CT. We were told that his spine had gotten worse and was very complicated. Shriner's deal with children and although K is a child, they said his back and spinal cord had issues more commonly seen in adults. They said they would need to consult with other docs around the country to see how to proceed because the risks of doing surgery on his complicated little back were just as risky as not doing surgery. There is an issue of his own vertebrae damaging his spinal cord if left untreated but to untangle and fix the mess that his back is in, comes with the same risks including paralysis, loss of bowel and bladder control, diminished quality of life, loss of the ability to walk, etc. It was very clear to me that we had now exceeded Shriner's scope of knowledge, the docs were perplexed, and we would need to find someone who was comfortable takeing his case.
We sat in limbo until about a month ago when I contacted some local docs recommended by Shriner's. Our new doc looked at the CT/MRI results and concluded the same -- it is highly risky, but surgery needs to be done immediately. The new info he presented, however, brought all the on again/off again limbo into clearer focus. What we hadn't been told previously was that his 2002 fusion was no longer in place, that he had a tethered cord (which is that his spinal cord is being pulled on at the bottom due to an attachment called a fatty filum), and a small syrinx or outpouching in his spinal cord. We had him tested years ago specifically for tethering and syringomyelia at the recommendation of our chiropractor. The results came back negative. You can imagine our shock last month to find out that those complications actually did exist and had existed all along. The issue is that someone might have overlooked these things because they were so small and hard to see. The on again/off again kept happening because in light of all the extra issues, surgery is risky and there is no guarantee it will makes things better and not worse. There is no manual, no story that is identical to what we are dealing with and hindsight will be our only guide as to whether we made the right decision or not. The awesome praise about that visit is that the doctor said he is so much more flexible that he should be (I think it's because our awesome Chiropractor worked on him nearly weekly since we found the scoli) and that kiddos with Kasey's degree of curvature have usually had multiple surgeries due to internal organ compromise...his organs are healthy and happy :)
So, a few weeks ago we met with a neurosurgeon to discuss spinal cord, tethering issues that would need to be addressed in their own surgery prior to the fusion surgery. She also met us with some perplexity. I should be used to this with K at this point because nothing in his life has been cut and dry. One doc years ago used him as a case study because of his complexities. The neuro said she would ask other neuro's and see what their opinions are because spinal cord surgery may be necessary but it may not be. Well, today her call came. He needs to have surgery for his tethering but originally we were told it would require two surgeries, now they are going to do the fusion and tethering in one. August 29th. That's our day. Tomorrow we go in for a pre-op appointment where we will learn more about what's to come. I've stalked these docs online and learned all I can about them and their reputations and I feel 100% comfortable with them doing it. Where I lose it is in the risks and the amount of pain they tell us Kasey will have post-op.
The expected outcome for him is that after 6 mos of recouperating, he will be able to join right back in to all the sports he loves! He should be able to walk further distances, and his daily back pain should become little to nothing. He should be straighter which will lighten the load on his organs, it could possibly cure his migraines as thethering of the cord can cause them. And it could give him enough height to slam dunk a basketball! (Well...almost!)
We are fully placing our faith in God and this hasn't come without lots of prayer. We feel peace about moving forward with surgery but we know there's no turning back once the decision is made. There is no way to know what the future holds. We feel it holds peace, health, prosperity, and long life for our son and we are holding tightly to that.
The neurosurgeon will go in and cut the attachment that is causing the tethering of his cord. The biggest risk with her is that she could cut a nerve root and it could cause numbness in a certain area. Her part is self admittedly easy compared to the other two docs'. The spinal fusion will be from neck to pelvis. It will be an 8-12 hour surgery with docs who have done many of these surgeries in third world countries with much less technology and even by candlelight. God led us to these doctors, of that I am sure. In the link below, you can learn about the fusion surgery as told by one of Kasey's actual doctors.
We know the power of God and resiliency of our kiddo so we ask you to join with us in praying for Kasey, our docs, and our family as we face this last foreseeable hurdle in Kasey's journey to wellness. I am not beyond begging for your prayers and in advance, thank you, because you will never know how much those mean to us.
I am planning on using this blog to regularly post updates to family and friends so feel free to subscribe if you want to stay in the loop. Any who know me, know I am not good at making/answering phone calls so this will be a good spot to get info.
In 2002, K had a partial spinal fusion in his lumbar area. They added cadaver bone to a vertebrae that was triangular-shaped and he went into a body cast immediately after for a few months. He was given a wheelchair and we were told not to let him walk for a while. So, I would pull the wheelchair up to our basketball hoop (because b-ball was his fav!) and my other son, Noah, just a year and a half old would fetch balls for him. I believe we only made it about a week before K figured out how to wiggle out of his chair and I found him standing up playing ball WITH Noah and that was the end of keeping him down. Same with his open heart surgery. Just a few days post-op, he was standing up in his hospital crib shaking the side of it! He sure is a trooper and if you know him, he's got a wonderful attitude so I'm sure that his upcoming surgery will be no different.
Since 2002, it has only been body casts, braces, and frequent doctor visits to closely monitor his growth. In late 2008 we got news that it was time to address surgery. We did everything needed and even drove through a massive snow storm to Salt Lake City Shriner's for the surgery. When we met with doctors however, they said it was a no-go. And we've been on the "surgery or not" roller coaster ever since. Some of you have been on that with us and probably got tired of us getting all ready for surgery only to say it was cancelled. It was very emotionally taxing, and honestly, it will be a relief not to have this major surgery looming over us anymore. We never could totally understand why surgery kept getting cancelled. Now we plainly see it was because no one really, really knew what the best plan of action was.
Last year in December we met with K's docs to discuss recent results of his spine MRI and CT. We were told that his spine had gotten worse and was very complicated. Shriner's deal with children and although K is a child, they said his back and spinal cord had issues more commonly seen in adults. They said they would need to consult with other docs around the country to see how to proceed because the risks of doing surgery on his complicated little back were just as risky as not doing surgery. There is an issue of his own vertebrae damaging his spinal cord if left untreated but to untangle and fix the mess that his back is in, comes with the same risks including paralysis, loss of bowel and bladder control, diminished quality of life, loss of the ability to walk, etc. It was very clear to me that we had now exceeded Shriner's scope of knowledge, the docs were perplexed, and we would need to find someone who was comfortable takeing his case.
We sat in limbo until about a month ago when I contacted some local docs recommended by Shriner's. Our new doc looked at the CT/MRI results and concluded the same -- it is highly risky, but surgery needs to be done immediately. The new info he presented, however, brought all the on again/off again limbo into clearer focus. What we hadn't been told previously was that his 2002 fusion was no longer in place, that he had a tethered cord (which is that his spinal cord is being pulled on at the bottom due to an attachment called a fatty filum), and a small syrinx or outpouching in his spinal cord. We had him tested years ago specifically for tethering and syringomyelia at the recommendation of our chiropractor. The results came back negative. You can imagine our shock last month to find out that those complications actually did exist and had existed all along. The issue is that someone might have overlooked these things because they were so small and hard to see. The on again/off again kept happening because in light of all the extra issues, surgery is risky and there is no guarantee it will makes things better and not worse. There is no manual, no story that is identical to what we are dealing with and hindsight will be our only guide as to whether we made the right decision or not. The awesome praise about that visit is that the doctor said he is so much more flexible that he should be (I think it's because our awesome Chiropractor worked on him nearly weekly since we found the scoli) and that kiddos with Kasey's degree of curvature have usually had multiple surgeries due to internal organ compromise...his organs are healthy and happy :)
So, a few weeks ago we met with a neurosurgeon to discuss spinal cord, tethering issues that would need to be addressed in their own surgery prior to the fusion surgery. She also met us with some perplexity. I should be used to this with K at this point because nothing in his life has been cut and dry. One doc years ago used him as a case study because of his complexities. The neuro said she would ask other neuro's and see what their opinions are because spinal cord surgery may be necessary but it may not be. Well, today her call came. He needs to have surgery for his tethering but originally we were told it would require two surgeries, now they are going to do the fusion and tethering in one. August 29th. That's our day. Tomorrow we go in for a pre-op appointment where we will learn more about what's to come. I've stalked these docs online and learned all I can about them and their reputations and I feel 100% comfortable with them doing it. Where I lose it is in the risks and the amount of pain they tell us Kasey will have post-op.
The expected outcome for him is that after 6 mos of recouperating, he will be able to join right back in to all the sports he loves! He should be able to walk further distances, and his daily back pain should become little to nothing. He should be straighter which will lighten the load on his organs, it could possibly cure his migraines as thethering of the cord can cause them. And it could give him enough height to slam dunk a basketball! (Well...almost!)
We are fully placing our faith in God and this hasn't come without lots of prayer. We feel peace about moving forward with surgery but we know there's no turning back once the decision is made. There is no way to know what the future holds. We feel it holds peace, health, prosperity, and long life for our son and we are holding tightly to that.
We know the power of God and resiliency of our kiddo so we ask you to join with us in praying for Kasey, our docs, and our family as we face this last foreseeable hurdle in Kasey's journey to wellness. I am not beyond begging for your prayers and in advance, thank you, because you will never know how much those mean to us.
I am planning on using this blog to regularly post updates to family and friends so feel free to subscribe if you want to stay in the loop. Any who know me, know I am not good at making/answering phone calls so this will be a good spot to get info.
Friday, August 10, 2012
I Prefer Distractions and Delusions...
Today my thoughts have been ripped from my delusional, happy place back into reality. Let me tell you about my happy place. It's wonderful, really, really wonderful!
My happy place exists only in my mind but being the imaginitive and highly convincing soul that I am, I exist there pretty much daily! It brings peace and contentment to some otherwise unnerving situations. It is a place where no one is sick, there are no medical issues, no specialists, no doctors, no bad news, no special needs, no worries about the futures or safety of my boys, no major medical bills, no blended families, no past baggage. In my delusional world, BOTH of my boys are healthy. My husband and I do not have a blended family but instead are a wonderful, solid little family -- who see eachother every single day. Our family is the most awesome in the whole world! We have grandkids and a daughter-in-law to die for. We have no one meddling in our lives, no one stirring up trouble. The awesome family, daughter-in-law, grandkid thing is actual REALITY. The farce of that is the blended part. There are parts of our lives that blend about as well as oil and water. Those are the things I ignore in my happy place. On a regular basis I am effective at ignoring those things and existing as if all is well. It has become a self-preservation mechanism for me, my health, for my marriage, for my sanity (well, what little sanity I had anyway).
I have been re-doing my bathroom this week while my hubby was on business in Pennsylvania. I jumped into this project quickly initially thinking it was just because it needed done. I quickly realized it was really just a distraction from what was to come. I knew I was expecting a call at the end of the week. Today is the day the call is supposed to come in. Today I am sitting by my phone waiting...waiting on a Neurosurgeon to tell me what the future holds regarding my 13 year old son and a spinal cord surgery. I am weepy, on edge, and yanked from my happy place. I have a good idea of what is to come. This spinal cord surgery is in question. But even if it doesn't happen, there's another definite spinal surgery immediately waiting in its wings. So the only question is: will he have one surgery or two? And when will this nightmare begin and end?
I have faith in God. I have faith that He will come through for my son. I pray about it all the time and many others have joined us in regular prayer. It's not a lack of faith that makes me cry. It's not hope for the future. It's the pain my child will have to endure no matter what outcome awaits us on the other side. We sometimes question how much our son absorbs due to his mental challenges but the other day in the car when he sat quietly for a long while, I asked him what he was thinking about. He said he was thinking about his surgery pain. I would be stupid to think that I'm the only concerned with what is about to happen. It weighs on my child's mind. It weighs on all of us. However on a normal daily basis we could ignore these thoughts because they weren't yet imminent. Now it's staring me in the face and I miss my happy place. I can be so delusional regarding my son that his limitations will shock me all over again because I see him as so normal on my daily radar. My son has a speech problem???? Oh yeah, he does, I forgot! He isn't "normal"???? Oh yeah, I forgot. He has severe scoliosis??? I guess I remember that.
I love delusionality and when I can't be in that space, I love me some distractions. It's not all bad though, my bathroom now looks AWESOME! And my happy place is vacant now for a (short) while, so if anyone is looking to get away, I would be willing to rent it out for a small charge!
And most importantly, if and when you think of us, say a prayer for our family. What is to come for us is the biggest mountain we've had to climb with Kasey in about 10 years. Good or bad, I feel out of practice with handling reality.
My happy place exists only in my mind but being the imaginitive and highly convincing soul that I am, I exist there pretty much daily! It brings peace and contentment to some otherwise unnerving situations. It is a place where no one is sick, there are no medical issues, no specialists, no doctors, no bad news, no special needs, no worries about the futures or safety of my boys, no major medical bills, no blended families, no past baggage. In my delusional world, BOTH of my boys are healthy. My husband and I do not have a blended family but instead are a wonderful, solid little family -- who see eachother every single day. Our family is the most awesome in the whole world! We have grandkids and a daughter-in-law to die for. We have no one meddling in our lives, no one stirring up trouble. The awesome family, daughter-in-law, grandkid thing is actual REALITY. The farce of that is the blended part. There are parts of our lives that blend about as well as oil and water. Those are the things I ignore in my happy place. On a regular basis I am effective at ignoring those things and existing as if all is well. It has become a self-preservation mechanism for me, my health, for my marriage, for my sanity (well, what little sanity I had anyway).
I have been re-doing my bathroom this week while my hubby was on business in Pennsylvania. I jumped into this project quickly initially thinking it was just because it needed done. I quickly realized it was really just a distraction from what was to come. I knew I was expecting a call at the end of the week. Today is the day the call is supposed to come in. Today I am sitting by my phone waiting...waiting on a Neurosurgeon to tell me what the future holds regarding my 13 year old son and a spinal cord surgery. I am weepy, on edge, and yanked from my happy place. I have a good idea of what is to come. This spinal cord surgery is in question. But even if it doesn't happen, there's another definite spinal surgery immediately waiting in its wings. So the only question is: will he have one surgery or two? And when will this nightmare begin and end?
I have faith in God. I have faith that He will come through for my son. I pray about it all the time and many others have joined us in regular prayer. It's not a lack of faith that makes me cry. It's not hope for the future. It's the pain my child will have to endure no matter what outcome awaits us on the other side. We sometimes question how much our son absorbs due to his mental challenges but the other day in the car when he sat quietly for a long while, I asked him what he was thinking about. He said he was thinking about his surgery pain. I would be stupid to think that I'm the only concerned with what is about to happen. It weighs on my child's mind. It weighs on all of us. However on a normal daily basis we could ignore these thoughts because they weren't yet imminent. Now it's staring me in the face and I miss my happy place. I can be so delusional regarding my son that his limitations will shock me all over again because I see him as so normal on my daily radar. My son has a speech problem???? Oh yeah, he does, I forgot! He isn't "normal"???? Oh yeah, I forgot. He has severe scoliosis??? I guess I remember that.
I love delusionality and when I can't be in that space, I love me some distractions. It's not all bad though, my bathroom now looks AWESOME! And my happy place is vacant now for a (short) while, so if anyone is looking to get away, I would be willing to rent it out for a small charge!
And most importantly, if and when you think of us, say a prayer for our family. What is to come for us is the biggest mountain we've had to climb with Kasey in about 10 years. Good or bad, I feel out of practice with handling reality.
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