MK had what would be an expected evening. She made sure the clocks were all working perfectly. She knew exactly when she was due her next pain medication and made sure she got it on time.
Holly was able to get a couple of hours of sleep. I have not been as lucky, either doctors came in or I just could not fall asleep.
This morning doctors, interns, nurses, and more doctors. They just keep coming. They removed the bandage from the incision and it all looks good. She is moving better. Holly just put her hair in side pony tails, that seems to help.
Later today they will move her out of ICU into a normal room. They plan on her getting up and moving a little bit. Once she can get up she will have the cath removed. She never felt comfortable with the bed pan so the cath was the best bet.
Other than that everyone is doing well. I will add to this post later today
It took me a while but here is the final update for day 2. It is now 1 am on day 3.
MK is still in ICU, at first is was because they did not have a room for her, which turns out to be a good thing. After a good 3 hours of sleep she woke up in a lot of pain and a fever. The took some blood and urine and are running tests. It is amazing after having such a good afternoon, that they pain came back so strong. The good news is they have it under control now. Oh I forgot to mention some of the pain medication she was taking caused her to itch all over. So we have added another item that MK is allergic to. Right now she is awake and talking to Holly. On my next post I hope to have the results of the tests they ran on her blood and urine. Please excuse any typos or other errors, writing is not one of my strengths and when I am tired I am sure I will make many mistakes. Ryan did stop by tonight. I am sorry he saw her not at her best. Next update soon.
Wednesday, March 31, 2010
Tuesday, March 30, 2010
ICU - Day of Surgery
MK was moved to ICU around 12:30. The ICU at Emory is very new. There is a little room off each ICU room where we can stay and the chairs make into beds. Sort of. MK has been getting some drugs every two hours and a Valium about every four hours. Pain management is the main thing right now. Currently she does not like moving her head much because of the pain. The evening nurses checked in around 7:30 tonight. Our nurse seems very sharp. Mk liked her.
Dr. Barrow stopped by earlier and said everything went as planned today. He said she would most likely move out of ICU sometime tomorrow. Not sure if I like that since MK is getting such great care here. The plan is for her also to get up tomorrow.
Hopefully the pain will be much less tomorrow. Not sure if Holly and I will get a lot of sleep tonight. Holly is giving it a try now, since we have been up since 3:30 AM.
Next post - tomorrow.
Dr. Barrow stopped by earlier and said everything went as planned today. He said she would most likely move out of ICU sometime tomorrow. Not sure if I like that since MK is getting such great care here. The plan is for her also to get up tomorrow.
Hopefully the pain will be much less tomorrow. Not sure if Holly and I will get a lot of sleep tonight. Holly is giving it a try now, since we have been up since 3:30 AM.
Next post - tomorrow.
Day of Surgery
Everyone was up at the crack of dawn since we had to be at the hospital at 5:30 AM. It is amazing how fast you can get some place in Atlanta when there is no traffic.
We arrive at the waiting room around 5:15 and were called back to the prep area around 5:50. MK was very nervous all morning. It was the first time she was openingly emotional. Who could blame her. Her biggest worry was she wanted to make sure she was completely out before they did anything. Once the IV was in and they started giving her happy juice she alternated between laughing and crying.
As a parent there is nothing worse then seeing your child in pain (emotional or physical). Holly is the rock this morning. I try to cut some jokes to keep it light. I kidded MK about the cost of all the kleenex.
Well they rolled her back at around 7:20. They still had not shaved the area of MK's head yet.
We now wait in the waiting room!
We arrive at the waiting room around 5:15 and were called back to the prep area around 5:50. MK was very nervous all morning. It was the first time she was openingly emotional. Who could blame her. Her biggest worry was she wanted to make sure she was completely out before they did anything. Once the IV was in and they started giving her happy juice she alternated between laughing and crying.
As a parent there is nothing worse then seeing your child in pain (emotional or physical). Holly is the rock this morning. I try to cut some jokes to keep it light. I kidded MK about the cost of all the kleenex.
Well they rolled her back at around 7:20. They still had not shaved the area of MK's head yet.
We now wait in the waiting room!
Friday, March 19, 2010
Appointment with Dr. Barrow - March 10th
Wednesday March 10th at 9 AM, we had our first appointment with Dr. Barrow. Prior to our appointment we had heard nothing but positive feedback from everyone who had him as a surgeon.
A nurse came in and took MK's vitals. I commented on how I wished my blood pressure was as good as MK's. I guess youth, exercise and weight gave her a huge advantage over me. Then Dr. Barrow's main nurse came in and proceeded to get MK's history and symptoms. Other then the headaches it was tough for MK to identify all the symptoms because either she does not have that many compared to most Chiari Malformation patients, or they may have just come on so slow that she does not realize they are a symptom. MK explained about her headaches, some dizziness every now and then, stiffness in her neck and I added that she seemed to be tired a lot, but I was not sure if that was a symptom or just being a teenager. After all the information was taken by the nurse we waited for Dr. Barrow.
Once Dr. Barrow came in, he confirmed everything we had heard about him. He was very personable and spent most of the time talking to MK, which made her feel good. He did a great job explaining what Chiari Malformation was while he was drawing a picture of it. He explained to us that MK would need decompression surgery to relieve the pressure and to resolve the syrinx in her spine. He walked us through what he would do during surgery. He would remove a small piece of the base of the skull to provide more room for the brain. He would also remove the back half of the C1 vertebrae, also to make more room. The Dura would then be opened and a Dura patch would be installed. All of these procedures are to increase the space for the brain and relive the pressure at the foramen magnum. He said he would not do a shunt at the location of the syrinx, since the decompression surgery will most likely resolve the syrinx over time. He said if needed we could always do that at a later date, but he did not want to do it if it was not needed. Dr. Barrow said that a small strip of hair would need to be removed on the neck and base of MK's skull. He said that since MK's hair was long that after surgey her hair would cover the incision area and not be visable unless she wanted to show it to people. I think that was a big relief to MK and Holly. Since I am losing my hair any way I was prepared to get the same hair cut MK got, but it looks like I will be able to keep what little I have.
I was glad to hear him walk us through how the surgery would be performed. Based on some research I had done, Dr. Barrow and the research matched. Here is a study I had found. Study
Dr. Barrow did say that the surgery was not an emergency, but MK did need the surgery before her condition got worse. Dr. Barrow stated that most of his patients say the worst part of the whole process is waiting for the surgery and as a result most want to proceed right away. I agree waiting stinks. Based on that, we decided to have the surgery on March 30th. We choose that date since it was the week before MK's spring break. Dr. Barrow was optimistic that MK would be able to go back to school after spring break. I hope he is right, but it will not be a big deal if she has to be out an extra week.
Dr. Barrow did say that normally when he does neuro-surgery on patients there is not much pain after the surgery, however since the entry point on MK's surgery is on the back of the neck he said that would not be the case. He said that since there are a lot of muscles on the back of the neck that is where the recovery pain would come from. This is one of the main reasons they keep people in the hospital for about 3 to 5 days so they can manage the pain in addition to make sure everything is ok. I know this is one of MK's major concerns.
Dr. Barrow stated that as far as neuro-surgery goes this is not that complicated compared to other procedures. While I was glad to hear this, it is still major surgery and we are still apprehensive as any family would be.
So Pre-Op is scheduled for Monday March 29th and surgery is scheduled for March 30th. We will have to be at the hospital at 5:30 am. Based on other peoples experience I am guessing surgery will start around 8 AM and will be completed around 11 to Noon. Here is a link to a wonderful blog and it gave a time line for her procedure.
That is it for now. Next post will be after the surgery
A nurse came in and took MK's vitals. I commented on how I wished my blood pressure was as good as MK's. I guess youth, exercise and weight gave her a huge advantage over me. Then Dr. Barrow's main nurse came in and proceeded to get MK's history and symptoms. Other then the headaches it was tough for MK to identify all the symptoms because either she does not have that many compared to most Chiari Malformation patients, or they may have just come on so slow that she does not realize they are a symptom. MK explained about her headaches, some dizziness every now and then, stiffness in her neck and I added that she seemed to be tired a lot, but I was not sure if that was a symptom or just being a teenager. After all the information was taken by the nurse we waited for Dr. Barrow.
Once Dr. Barrow came in, he confirmed everything we had heard about him. He was very personable and spent most of the time talking to MK, which made her feel good. He did a great job explaining what Chiari Malformation was while he was drawing a picture of it. He explained to us that MK would need decompression surgery to relieve the pressure and to resolve the syrinx in her spine. He walked us through what he would do during surgery. He would remove a small piece of the base of the skull to provide more room for the brain. He would also remove the back half of the C1 vertebrae, also to make more room. The Dura would then be opened and a Dura patch would be installed. All of these procedures are to increase the space for the brain and relive the pressure at the foramen magnum. He said he would not do a shunt at the location of the syrinx, since the decompression surgery will most likely resolve the syrinx over time. He said if needed we could always do that at a later date, but he did not want to do it if it was not needed. Dr. Barrow said that a small strip of hair would need to be removed on the neck and base of MK's skull. He said that since MK's hair was long that after surgey her hair would cover the incision area and not be visable unless she wanted to show it to people. I think that was a big relief to MK and Holly. Since I am losing my hair any way I was prepared to get the same hair cut MK got, but it looks like I will be able to keep what little I have.
I was glad to hear him walk us through how the surgery would be performed. Based on some research I had done, Dr. Barrow and the research matched. Here is a study I had found. Study
Dr. Barrow did say that the surgery was not an emergency, but MK did need the surgery before her condition got worse. Dr. Barrow stated that most of his patients say the worst part of the whole process is waiting for the surgery and as a result most want to proceed right away. I agree waiting stinks. Based on that, we decided to have the surgery on March 30th. We choose that date since it was the week before MK's spring break. Dr. Barrow was optimistic that MK would be able to go back to school after spring break. I hope he is right, but it will not be a big deal if she has to be out an extra week.
Dr. Barrow did say that normally when he does neuro-surgery on patients there is not much pain after the surgery, however since the entry point on MK's surgery is on the back of the neck he said that would not be the case. He said that since there are a lot of muscles on the back of the neck that is where the recovery pain would come from. This is one of the main reasons they keep people in the hospital for about 3 to 5 days so they can manage the pain in addition to make sure everything is ok. I know this is one of MK's major concerns.
Dr. Barrow stated that as far as neuro-surgery goes this is not that complicated compared to other procedures. While I was glad to hear this, it is still major surgery and we are still apprehensive as any family would be.
So Pre-Op is scheduled for Monday March 29th and surgery is scheduled for March 30th. We will have to be at the hospital at 5:30 am. Based on other peoples experience I am guessing surgery will start around 8 AM and will be completed around 11 to Noon. Here is a link to a wonderful blog and it gave a time line for her procedure.
That is it for now. Next post will be after the surgery
Monday, March 15, 2010
How It all Started
During the month of February 2010 my daughter, who I will call MK, told us she was having headaches behind her left eye. Since she is not a complainer, my wife Holly and I decided to go ahead and set up an appointment with an ophthalmologist to have her eyes checked out.
Other then her eyes being a little dry, the ophthalmologist did not see anything so he recommended that we see a neurologist just to be on the safe side. On February 11 we met with Dr. Kennedy. On that day he did not see any symptoms or issues either, but once again to be on the safe side he decided to order a MRI of her brain just to make sure.
MK had her MRI on Saturday February 20th 2010. During the MRI the technician must have seen something because they did a second MRI of the neck. Well that Monday morning I received a call at work from Dr. Kennedy's office asking that we come in right away. You can imagine that I was pretty scared not knowing what the problem may be. I called Holly at work and told her and then proceeded to go to MK's school and check her out.
Once we were all at Dr. Kennedy's office he did some more reflex tests and asked MK a lot of questions. He told us that MK had a Chiari malformation with part of her cerebellar tonsils below the foramen magum and a syrinx in her spine.
Having never heard of Chiari Malformation or Syrinx, Dr. Kennedy took time to explain what this was and let us know that if this was not taken care of it could cause some neuro problems later in life. He recommend we go see a Neuro-surgeon and provided us a list of possible surgeons. He was almost certain that surgery would be needed. He also recommended that MK stop her aerobics until after we met with the Neuro-surgeon. Dr. Kennedy did say that we were lucky that this has been caught early before any serious symptoms developed.
Numb and In Shock
After leaving the office all of us where in shock. MK decided to go back to school, Holly decided to stay home so that she would be there when MK got home from school, and after spending some time on the Internet reading about Chiari Malformation and Syrinx, I decided to go back to work. Many tears where cried that day by all.
Day Two After Diagnosis
I am sure nobody in our household slept very much last night. Because it was so hard to discuss this without getting emotional, email became the best way for me to communicate with my family and friends.
The second day after diagnosis became the day that Holly and I started researching the best Neuro-Surgeons in the Atlanta Area. This challenge was complicated since MK was 16, so not all Neuro-Surgeons might take the case.
After doing extensive research (as much as one can do in a day) we decided on Dr. Barrow of Emory University Hospital. I faxed the MRI report to his office on February 23rd and then we had to wait until he was in his office and could review the report on Wednesday. I can't tell you how agonizing the waiting was. The following day I was able to confirm with his office that he was going to take the case and our first appointment was scheduled for March 10th. Yes more waiting, the next two weeks were very tough.
With two weeks before our appointment, we all spent time researching everything from the doctor, to the hospital, to how the surgery should be performed. During this time we found out that some of our acquaintances had Dr. Barrow as their doctor. Everyone had great things to say about him. Dr. Daniel L. Barrow, MD is the Professor and Chairman Department of Neurosurgery and also the Chief of the Neurosurgery Service at Emory University Hospital. Here is a Link on Dr. Barrow
The day before the appointment, I was glad and concerned at the same time. I was glad we were moving forward, and concerned on what Dr. Barrow might say.
Other then her eyes being a little dry, the ophthalmologist did not see anything so he recommended that we see a neurologist just to be on the safe side. On February 11 we met with Dr. Kennedy. On that day he did not see any symptoms or issues either, but once again to be on the safe side he decided to order a MRI of her brain just to make sure.
MK had her MRI on Saturday February 20th 2010. During the MRI the technician must have seen something because they did a second MRI of the neck. Well that Monday morning I received a call at work from Dr. Kennedy's office asking that we come in right away. You can imagine that I was pretty scared not knowing what the problem may be. I called Holly at work and told her and then proceeded to go to MK's school and check her out.
Once we were all at Dr. Kennedy's office he did some more reflex tests and asked MK a lot of questions. He told us that MK had a Chiari malformation with part of her cerebellar tonsils below the foramen magum and a syrinx in her spine.
Having never heard of Chiari Malformation or Syrinx, Dr. Kennedy took time to explain what this was and let us know that if this was not taken care of it could cause some neuro problems later in life. He recommend we go see a Neuro-surgeon and provided us a list of possible surgeons. He was almost certain that surgery would be needed. He also recommended that MK stop her aerobics until after we met with the Neuro-surgeon. Dr. Kennedy did say that we were lucky that this has been caught early before any serious symptoms developed.
Numb and In Shock
After leaving the office all of us where in shock. MK decided to go back to school, Holly decided to stay home so that she would be there when MK got home from school, and after spending some time on the Internet reading about Chiari Malformation and Syrinx, I decided to go back to work. Many tears where cried that day by all.
Day Two After Diagnosis
I am sure nobody in our household slept very much last night. Because it was so hard to discuss this without getting emotional, email became the best way for me to communicate with my family and friends.
The second day after diagnosis became the day that Holly and I started researching the best Neuro-Surgeons in the Atlanta Area. This challenge was complicated since MK was 16, so not all Neuro-Surgeons might take the case.
After doing extensive research (as much as one can do in a day) we decided on Dr. Barrow of Emory University Hospital. I faxed the MRI report to his office on February 23rd and then we had to wait until he was in his office and could review the report on Wednesday. I can't tell you how agonizing the waiting was. The following day I was able to confirm with his office that he was going to take the case and our first appointment was scheduled for March 10th. Yes more waiting, the next two weeks were very tough.
With two weeks before our appointment, we all spent time researching everything from the doctor, to the hospital, to how the surgery should be performed. During this time we found out that some of our acquaintances had Dr. Barrow as their doctor. Everyone had great things to say about him. Dr. Daniel L. Barrow, MD is the Professor and Chairman Department of Neurosurgery and also the Chief of the Neurosurgery Service at Emory University Hospital. Here is a Link on Dr. Barrow
The day before the appointment, I was glad and concerned at the same time. I was glad we were moving forward, and concerned on what Dr. Barrow might say.
First Post
To all prospective readers, this is the first time I have ever blogged, so please be patient while I try to get this site up and running.
The main purpose of the blog is to keep my family and friends up to date and then maybe provide a little insight to others who might be going through the same thing.
Check back soon for more detail.
The main purpose of the blog is to keep my family and friends up to date and then maybe provide a little insight to others who might be going through the same thing.
Check back soon for more detail.
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