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.
Saturday, September 29, 2012
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.
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