We left for Duke University on Tuesday morning, after dropping off the puppies with friends. We had been told it would take at least 2 hours, and even the GPS had us at 2 1/2, but we made it in just over an hour and a half... so we had some time to kill. We checked in to our hotel and just kinda sat on our hands for a few minutes til it was time to leave for the hospital. When we got there, we got checked in, triaged, and then sat down with the nurse to start talking about the actual procedure for Wednesday. I was honestly rolling my eyes inwardly as she over-explained the MRI process (we've been through it a few times, I get it!). Then she mentioned offhandedly, "well of course we'll be intubating him..." PAUSE, REWIND! What do you mean, you're sticking a tube down my son's throat? I had no idea. He's never been intubated before, only had to be monitored to be sure it wasn't necessary (sometimes a small child can go "too far" under the sedation and forget to breathe, but K has never had that problem). I was freaked out even more than before at this point, and thennnn she had me sign the waiver listing all the things that can go wrong! Needless to say, I was a bit of a basket case. We talked with a cardiologist, who explained everything that the nurse already had, and then we left.
After leaving the hospital, we went back to the hotel and took a group nap, then we went and trespassed (oops!) at a park that IBM has for their employees, and got ice cream for dinner. We tried to give K a good night, but we were as stressed as could be, and ended up calling it a night pretty early.
That night, as you can imagine, I got zero sleep. I kept wanting to pick Keagan up and just hold him. I'm not sure why this MRI was harder for me than the others he's had before, but it was. So we got up early the next day and headed out to the hospital. When we got there at the time the nurse told us to, no one was ready for us. Turns out, they're so on their game that you don't need 2 hours to register, only about 10 minutes... but we were already there, so they actually got us rolling a little earlier than we would have normally.
When the nurses called us back from the waiting room, they once again talked the procedure to death, four different times... but hey, at least we had no questions? So then the anesthesiologist had me give Keagan some oral medication to make him sleepy... she called it happy medicine, saying most kids act drunk and lovey, but I wondered what it would really do to K, since he's a major lovebug anyway. The answer: he was MEAN! Well, at least to daddy. I caught no ill effects of temper. So while we waited for the medication to take full effect, we talked with the cardiologist who was actually doing the procedure. He explained that Dr. Miller (our Fayetteville doctor) was just looking to be sure his findings were correct before we went forward with surgery (which I appreciate infinitely!).
Once enough time for the sedative had passed, I carried him back to the MRI room. I held him while the nurse put him under with laughing gas-- and she rambled about Skittles in buckets, or something... by this point I was trying not to cry so I wasn't really focused on her. When they took him from me, I gave him a kiss and said a prayer for him as best I could form words-- although lately my prayers really have no words, and I have to trust that God understands that anyway.
As James and I walked down to the cafeteria, I was really out of it. James kept talking to me, but I couldn't understand what he was saying at all. I felt like I left myself upstairs. I'm sure I looked like a maniac, and eating food was a major ordeal. The nurse finally called me to say he was intubated and that the procedure had begun, so we just sat out in the hallway and waited. After about two hours total, they finally called to say we could meet with the doctor. Of course neither of us really cared what he had to say before we saw Keagan, but I guess he wanted our full attention (he didn't get it, but he ended up pulling up the MRI images at the nurses' station in the recovery ward after we had checked on Keagan). He said that Keagan's issues weren't as bad as he was expecting-- I gathered that he was expecting to have to admit him immediately and do surgery without delay, when it's not a life-threatening emergency at this point, it only needs to be done soon. He said Keagan was about a 5 or 6 on a scale of 1-10, and that it could be a lot worse. He showed us some of the images of Keagan's heart and said we would have to watch for his bicuspid valves to have issues for... ever?
Once I got to Keagan's bedside, I bent down to kiss him, and he woke up enough to mumble that he wanted to "go right now mama!" before he went back under. His voice was so raspy and broken from the ventilator that it just shattered my heart. I got to hold him, and he wrapped his arms around me and didn't want to move again. We were supposed to get him drinking fluids, but he was so out of it that he was refusing. After about an hour, the nurses started to get a little concerned that he just wasn't waking up (I tried to tell them it was naptime anyway but they didn't listen) or taking any fluids, so James jostled him around some and pushed the gatorade hard-- he took it, and the nurses said we could go, even with him being so groggy. So I started to get him dressed, and then he started throwing up. He threw up about 3 times, every bit of liquid and acid in his little belly, and then he just wanted to be held again. The nurses wanted him to take some Sprite or something, but he wasn't having it (I wouldn't have either). So we wrapped him in a sheet and took him to the car, armed with those pink puke buckets and extra towels. He didn't eat or drink much on the ride home, and I sat in back with him just in case most of the ride. But when we got home, he laid around with me for a while, then had a sandwich and a few cups of juice.
Today, his voice is still kind of raspy, he just sounds like he has a croupy cough. But he's eating and talking, although he's fussy, he's mostly back to normal.
The game plan now is to wait for the full report to go to our cardiologist, and we should be meeting with him next week to devise a plan for surgery and possibly set a date.
Next week is also very busy for us, Monday we have his first speech therapy; Wednesday he has ANOTHER sedated MRI, this time of his head and spine; Thursday we meet with his neurologist. Thank God for calendars, because I wouldn't be able to keep this all straight otherwise! Hopefully it calms down in a few weeks, because I can't handle this being the new normal! I'll update again when I have more information, and as always, thank you all for the prayers and encouraging words.
Thursday, March 24, 2011
Monday, March 21, 2011
update before the news
Since I last posted, we've been having a lot of developmental testing done. Keagan is delayed, although not severely, and only in the aspect of his ability to communicate. His cognitive skills are on track, so he can understand everything, and continues to learn things at a rapid clip. However, his speech continues to decline, and it is a struggle for even me to understand him a lot of the time. He will begin speech, physical, and occupational therapy within the next month, and will begin a transition to preschool, starting class after his 3rd birthday.
Some members of his care team have expressed concern that he may soon lose the ability to swallow food and saliva on his own. He is showing some of the warning signs, but not on a regular or severe basis. If that were to actually happen, I assume that there would be a feeding tube involved, however we are just watching and waiting for now.
Tomorrow, we head to Duke University Hospital for his cardiac MRI process to begin. He will undergo a pre-sedation physical tomorrow afternoon, and then the sedated MRI on Wednesday morning. The cardiologist we've been seeing here says that the radiologist should give us some feedback about his results after the procedure, but I guess we will see. A week or two after the procedure, we have been told we can expect a date to be set for surgery.
Keagan's neurology appointment has been moved up to March 31, and we are so thankful! He will have (sedated) MRIs of his head and spine done the day before, and his neuro is opening the clinic early just for Keagan to be seen (the power of prayer at it's finest). His bad days are increasing in frequency, although since we've gotten two puppies, they seem to be a little less severe. I'm no expert, but I feel that his MRI results will show an even further progression. Side story: When I went to schedule his neuro MRIs, I spoke to the head of radiology at Cape Fear Valley Hospital, who said that he remembered K's last MRI, because he was called in to consult on the results. It turns out that we were not told that Keagan appears to be missing the mylar sheaths in his frontal lobe, leaving his brain tissue and nerves exposed-- but we will know more after the MRI, because it may have just been a fluke or lack of development due to his young age.
So, I think that catches us up before we go in to the cardiologist. I'll update more as I know it. Thank you always for all of your prayers and support.
Some members of his care team have expressed concern that he may soon lose the ability to swallow food and saliva on his own. He is showing some of the warning signs, but not on a regular or severe basis. If that were to actually happen, I assume that there would be a feeding tube involved, however we are just watching and waiting for now.
Tomorrow, we head to Duke University Hospital for his cardiac MRI process to begin. He will undergo a pre-sedation physical tomorrow afternoon, and then the sedated MRI on Wednesday morning. The cardiologist we've been seeing here says that the radiologist should give us some feedback about his results after the procedure, but I guess we will see. A week or two after the procedure, we have been told we can expect a date to be set for surgery.
Keagan's neurology appointment has been moved up to March 31, and we are so thankful! He will have (sedated) MRIs of his head and spine done the day before, and his neuro is opening the clinic early just for Keagan to be seen (the power of prayer at it's finest). His bad days are increasing in frequency, although since we've gotten two puppies, they seem to be a little less severe. I'm no expert, but I feel that his MRI results will show an even further progression. Side story: When I went to schedule his neuro MRIs, I spoke to the head of radiology at Cape Fear Valley Hospital, who said that he remembered K's last MRI, because he was called in to consult on the results. It turns out that we were not told that Keagan appears to be missing the mylar sheaths in his frontal lobe, leaving his brain tissue and nerves exposed-- but we will know more after the MRI, because it may have just been a fluke or lack of development due to his young age.
So, I think that catches us up before we go in to the cardiologist. I'll update more as I know it. Thank you always for all of your prayers and support.
Wednesday, February 16, 2011
a light in the dark
As all of the doctors visits increase, and the specialists multiply like laundry when you think you're all caught up... I just can't help but feel like I'm drowning. I'm helpless to stop my baby boy from hurting. I can't kiss these "owies" better, I can't love them away. It's such a horrible feeling to have my hands tied behind my back as my son's heart over works itself, and as he struggles to function daily with his speech and motor skills. We're doing all we can do by taking him to the many doctors and therapists, and yet I feel I have no foot hold. I have no way out, and some times I just want to hang my head and cry in despair. Through all of the diagnosises, we have continually been told that he was just born this way. Every thing he faces is congenital. Of course, as his mom, the lady that "grew" him, I feel personally responsible for any issues that arise. I've blamed myself for everything from a cowlick to an overworked heart, and it's absolutely exhausting.
I have fought my entire life to realize that everything DOES happen for a reason-- even the nasty, foul experience that seems to have no possible good for anyone has absolutely been justified to me as necessary, whether for me or for someone else; so in my own life, I no longer question negative experiences and ask, "why God?" When I felt the weight of my son in my arms for the first time, though, all bets were off. Suddenly, I wanted an absolutely perfect life for this small sized human being, and any down sides were NOT good, they were terrible, horrible, awful things that couldn't possibly be anything but unfair, and also my responsibility to fix.
I struggle with these feelings daily, hourly, minute by minute. I don't dwell on them or let them over run my life, but they are always there. That little feeling never eases. And just when I begin to feel absolutely hopeless and let the tears fall, I feel the nudging of a still, small voice beyond my cry of despair. "For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. " (Psalm 139: 13-16, NIV)
What a concept. My baby is a precise creation. This small person is not "broken," but a hand-crafted gift to me, and to the world around him, despite and perhaps because of his issues. Even though I freely admit, I don't see God's hand in this experience, I know it's there. I know that some day, it will all make sense. There is not a single beat of my child's heart that goes unnoticed by God, so who am I to feel like a failure? Keagan does not have a single problem that was an accident or a mistake. All of the things we are walking through are not my fault, because there's nothing happening that is wrong. From the very first cell that grew into the big tall two-year old that loves trains, trucks, planes, books, bubbles, and pigs, there is a specific blueprint being followed for him, and I'm just along for the ride. I love him with a deep and unfathomable love, and what I feel for him is only a fraction of what our big God feels for him. Beyond reason, I know that none of this is an accident. I have fear, because I'm human, and I want to be in control, but I know that Someone who can see the bigger picture is in control, and that's the most reassuring thought of all.
So as my knees shake, as my heart aches, as tears do fall from my eyes sometimes, I stand firm on the promise that God doesn't make mistakes, and that as much as I want good for Keagan's life, God wants infinitely more for him than I can comprehend.
I have fought my entire life to realize that everything DOES happen for a reason-- even the nasty, foul experience that seems to have no possible good for anyone has absolutely been justified to me as necessary, whether for me or for someone else; so in my own life, I no longer question negative experiences and ask, "why God?" When I felt the weight of my son in my arms for the first time, though, all bets were off. Suddenly, I wanted an absolutely perfect life for this small sized human being, and any down sides were NOT good, they were terrible, horrible, awful things that couldn't possibly be anything but unfair, and also my responsibility to fix.
I struggle with these feelings daily, hourly, minute by minute. I don't dwell on them or let them over run my life, but they are always there. That little feeling never eases. And just when I begin to feel absolutely hopeless and let the tears fall, I feel the nudging of a still, small voice beyond my cry of despair. "For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. " (Psalm 139: 13-16, NIV)
What a concept. My baby is a precise creation. This small person is not "broken," but a hand-crafted gift to me, and to the world around him, despite and perhaps because of his issues. Even though I freely admit, I don't see God's hand in this experience, I know it's there. I know that some day, it will all make sense. There is not a single beat of my child's heart that goes unnoticed by God, so who am I to feel like a failure? Keagan does not have a single problem that was an accident or a mistake. All of the things we are walking through are not my fault, because there's nothing happening that is wrong. From the very first cell that grew into the big tall two-year old that loves trains, trucks, planes, books, bubbles, and pigs, there is a specific blueprint being followed for him, and I'm just along for the ride. I love him with a deep and unfathomable love, and what I feel for him is only a fraction of what our big God feels for him. Beyond reason, I know that none of this is an accident. I have fear, because I'm human, and I want to be in control, but I know that Someone who can see the bigger picture is in control, and that's the most reassuring thought of all.
So as my knees shake, as my heart aches, as tears do fall from my eyes sometimes, I stand firm on the promise that God doesn't make mistakes, and that as much as I want good for Keagan's life, God wants infinitely more for him than I can comprehend.
Tuesday, February 15, 2011
hearts and spines and brains, oh my!
broken heartsville:
I can't remember if I had mentioned before here that Keagan, as a side note, was diagnosed with a heart murmur. In the chaos of diagnosis, that was such a non-issue that frankly I forgot about it for a while. When we got to Bragg, I mentioned it to his pediatrician and she re-issued our referral for cardiology. We went in last month, and were told that he did have a heart murmur, but it was probably nothing. They sent us to Duke Cardiology for one more test, because the machine they had at Womack wasn't designed for pediatrics and couldn't give a clear enough picture-- they weren't able to clearly see one of his aortic valves (but again I was anything but worried, because they told me when I was pregnant that he might be missing a kidney-- he's not, the Army just needs better equipment) and wanted to just be sure.
When we went in last week, we saw the same cardiologist (to anyone out here who needs a pediatric cardiologist, Dr. Miller is absolutely wonderful) as before. He remembered us, and off we went to have an electrocardiograph done on Keagan's heart. As the stenographer began the test, she suddenly got up and left. When Dr. Miller came back, they exchanged a few words and he turned to me and said, "I'm so glad you're here." Uh... alright? Cue a little knot of worry in my stomach.
After the test was completed, we went into Dr. Miller's office and he began to draw me some pictures. What he told me was that while he is actually missing a valve in his aorta (the condition is called a bicuspid valve), that was the least of our concerns. He has a narrowing in the main part of his aorta, called an aortic coarctation, that was fairly severe and would require surgery. As a by-product of the coarctation, he had some hypertrophy in his left ventricle (hardening of the heart tissue that can cause heart failure if left unchecked). He told me that his heart was working entirely too hard to pump his blood through the narrow portion of his aorta, and while it wouldn't become an emergency in the next 6 months, after that, there was no telling if he would experience some form or another of heart failure.
The plan currently is to have him go in for a cardiac MRI to get an even better picture of his heart and be able to form a 3-D picture/ surgical game plan for his 6-man pediatric surgery team. We will find out when his MRI is within a week or so, and then surgery should be scheduled a few weeks after that.
Chiari update:
I don't have much to update except that he seems to be showing signs of progression. He woke up almost 2 weeks ago with noticeably altered speech that has not yet improved all the way (or possibly at all, but I work extra hard to understand him, since few people can, so I'm used to his speech). The best explanation I can give is that before this, he could clearly say "fish," and now he says "fffffffffff."
We got hooked up with the Early Intervention specialists, who will be providing us with speech and physical therapy to help him learn to overcome his disadvantages due to his progression (they'll be working with him on his speech and balance better than I can on my own). They are going to start working with him Thursday morning, so we'll know how major his delays actually are by then.
His spine issue is just due to my increasing knowledge of his CM issues. There is a risk, with a CM, of cerebrospinal fluid building up in pockets in his spine, called syrinxes (I think?). From my understanding, it can cause nerve damage and extreme pain-- I don't think he has any, but what do I know? We are scheduling a follow up brain scan and spinal MRI this week as well.
Life is moving fast for us now, and I'm extremely emotional and overwhelmed, but I definitely feel we are in the right place for him to get the best treatment possible for his conditions, numerous as they may seem. I hope all of this will be a distant memory some day, and I'll be able to cheer my son on as he does whatever he chooses to do in life, with no consideration for the limitations imposed by his CM.
I can't remember if I had mentioned before here that Keagan, as a side note, was diagnosed with a heart murmur. In the chaos of diagnosis, that was such a non-issue that frankly I forgot about it for a while. When we got to Bragg, I mentioned it to his pediatrician and she re-issued our referral for cardiology. We went in last month, and were told that he did have a heart murmur, but it was probably nothing. They sent us to Duke Cardiology for one more test, because the machine they had at Womack wasn't designed for pediatrics and couldn't give a clear enough picture-- they weren't able to clearly see one of his aortic valves (but again I was anything but worried, because they told me when I was pregnant that he might be missing a kidney-- he's not, the Army just needs better equipment) and wanted to just be sure.
When we went in last week, we saw the same cardiologist (to anyone out here who needs a pediatric cardiologist, Dr. Miller is absolutely wonderful) as before. He remembered us, and off we went to have an electrocardiograph done on Keagan's heart. As the stenographer began the test, she suddenly got up and left. When Dr. Miller came back, they exchanged a few words and he turned to me and said, "I'm so glad you're here." Uh... alright? Cue a little knot of worry in my stomach.
After the test was completed, we went into Dr. Miller's office and he began to draw me some pictures. What he told me was that while he is actually missing a valve in his aorta (the condition is called a bicuspid valve), that was the least of our concerns. He has a narrowing in the main part of his aorta, called an aortic coarctation, that was fairly severe and would require surgery. As a by-product of the coarctation, he had some hypertrophy in his left ventricle (hardening of the heart tissue that can cause heart failure if left unchecked). He told me that his heart was working entirely too hard to pump his blood through the narrow portion of his aorta, and while it wouldn't become an emergency in the next 6 months, after that, there was no telling if he would experience some form or another of heart failure.
The plan currently is to have him go in for a cardiac MRI to get an even better picture of his heart and be able to form a 3-D picture/ surgical game plan for his 6-man pediatric surgery team. We will find out when his MRI is within a week or so, and then surgery should be scheduled a few weeks after that.
Chiari update:
I don't have much to update except that he seems to be showing signs of progression. He woke up almost 2 weeks ago with noticeably altered speech that has not yet improved all the way (or possibly at all, but I work extra hard to understand him, since few people can, so I'm used to his speech). The best explanation I can give is that before this, he could clearly say "fish," and now he says "fffffffffff."
We got hooked up with the Early Intervention specialists, who will be providing us with speech and physical therapy to help him learn to overcome his disadvantages due to his progression (they'll be working with him on his speech and balance better than I can on my own). They are going to start working with him Thursday morning, so we'll know how major his delays actually are by then.
His spine issue is just due to my increasing knowledge of his CM issues. There is a risk, with a CM, of cerebrospinal fluid building up in pockets in his spine, called syrinxes (I think?). From my understanding, it can cause nerve damage and extreme pain-- I don't think he has any, but what do I know? We are scheduling a follow up brain scan and spinal MRI this week as well.
Life is moving fast for us now, and I'm extremely emotional and overwhelmed, but I definitely feel we are in the right place for him to get the best treatment possible for his conditions, numerous as they may seem. I hope all of this will be a distant memory some day, and I'll be able to cheer my son on as he does whatever he chooses to do in life, with no consideration for the limitations imposed by his CM.
Thursday, January 13, 2011
follow up and results
Part One: The Run Around
We were told by Keagan's doctors to get an MRI every 6 months for the rest of his life. Well, at six months AD (after diagnosis), James and I were separated and I was living at my mom's in DEEP South Texas. I had 2 months worth of Tricare drama, which has been par for the course whenever I go to visit, because she's so far from a post or base of any kind that none of the doctors down there take my insurance (which is BOGUS to me but that could be another post in itself and I'm trying to stay focused). Long story short, a follow up MRI proved to be next to impossible, and as James and I were working to reconcile by the time the dust settled and I had an uphill fight on my hands, I decided to just wait until we got to Bragg.
When we got out to NC, I made an appointment with his primary care physician on post. As you milspouses will know, on post PCP = a certain hallway, where you take your chances on who you are seen by. Just my luck, I got a physician's assistant with crossed eyes (you try making eye contact when you can't tell which eye is the good eye and which is the bad!) and not a clue in his head of what I was talking about. I had to tell HIM about Keagan's condition, and explain what I needed from him as far as a referral for a sedated MRI, and on and on. So when we FINALLY got the sedated MRI scheduled at the on base hospital, the hospital told me that they required a sedation physical (which I felt like the PA should've KNOWN, and done, as he gave us the referral) before they could complete the procedure. Alright, fine, so we went BACK to the clinic, where I had to once again explain what I needed from the PA. He cleared Keagan for the MRI, and off we went. When we got to Womack on the day of his procedure, they hemmed and hawed around basically not wanting to take the liability of something going wrong. So they sent us home, with a referral to Cape Fear Valley hospital. I called, they didn't have the referral. I called back, they still didn't have it. After two weeks, they finally called me, only to say that they do pediatric MRIs once a week and the wait time was 6 weeks. When we fiiiiiinally got in to Cape Fear, they did the MRI with no problem.
Then came time to follow up with his PCP (the REAL PCP this time, not "Crazy Eyes"), but that was another 2 (or more?) week wait until they finally had the results in hand. Once I sat down with his PCP (who also had to look up his condition by the way... but at least she educated herself instead of just asking me for the rundown), she read off his results.
Part Two: Results
His CM has progressed in 10 months by about 40-50%. He now has a low-lying portion that is descended by about 10mm. There is still no fluid around his brain (which could cause seizures or brain damage), but the radiologist who made the report requested that further imaging of his spine to check for damages further down. We currently have a follow up scheduled with a pediatric neurologist/ neurosurgeon on February 4th.
I'm not sure how to put my feelings into words at this point. To say that I was hoping for a miracle is the biggest understatement. I know that I prayed so hard for this to just be a fluke, to disappear, and hearing that it had progressed to such an extent was a sucker punch to my heart. I don't have tears for it yet, although they clog my throat as I write this, because I don't know what happens next. Surgery is a very strong possibility. There's just as much possibility that the doctor will tell us to continue to wait and watch. It's terrifying to consider that this lurking danger is moving slowly forward, trying to claim my son. I have no means to fight, except to continue to watch and pray. I have to depend entirely on God and medicine to save my baby... and it's such a helpless feeling.
We were told by Keagan's doctors to get an MRI every 6 months for the rest of his life. Well, at six months AD (after diagnosis), James and I were separated and I was living at my mom's in DEEP South Texas. I had 2 months worth of Tricare drama, which has been par for the course whenever I go to visit, because she's so far from a post or base of any kind that none of the doctors down there take my insurance (which is BOGUS to me but that could be another post in itself and I'm trying to stay focused). Long story short, a follow up MRI proved to be next to impossible, and as James and I were working to reconcile by the time the dust settled and I had an uphill fight on my hands, I decided to just wait until we got to Bragg.
When we got out to NC, I made an appointment with his primary care physician on post. As you milspouses will know, on post PCP = a certain hallway, where you take your chances on who you are seen by. Just my luck, I got a physician's assistant with crossed eyes (you try making eye contact when you can't tell which eye is the good eye and which is the bad!) and not a clue in his head of what I was talking about. I had to tell HIM about Keagan's condition, and explain what I needed from him as far as a referral for a sedated MRI, and on and on. So when we FINALLY got the sedated MRI scheduled at the on base hospital, the hospital told me that they required a sedation physical (which I felt like the PA should've KNOWN, and done, as he gave us the referral) before they could complete the procedure. Alright, fine, so we went BACK to the clinic, where I had to once again explain what I needed from the PA. He cleared Keagan for the MRI, and off we went. When we got to Womack on the day of his procedure, they hemmed and hawed around basically not wanting to take the liability of something going wrong. So they sent us home, with a referral to Cape Fear Valley hospital. I called, they didn't have the referral. I called back, they still didn't have it. After two weeks, they finally called me, only to say that they do pediatric MRIs once a week and the wait time was 6 weeks. When we fiiiiiinally got in to Cape Fear, they did the MRI with no problem.
Then came time to follow up with his PCP (the REAL PCP this time, not "Crazy Eyes"), but that was another 2 (or more?) week wait until they finally had the results in hand. Once I sat down with his PCP (who also had to look up his condition by the way... but at least she educated herself instead of just asking me for the rundown), she read off his results.
Part Two: Results
His CM has progressed in 10 months by about 40-50%. He now has a low-lying portion that is descended by about 10mm. There is still no fluid around his brain (which could cause seizures or brain damage), but the radiologist who made the report requested that further imaging of his spine to check for damages further down. We currently have a follow up scheduled with a pediatric neurologist/ neurosurgeon on February 4th.
I'm not sure how to put my feelings into words at this point. To say that I was hoping for a miracle is the biggest understatement. I know that I prayed so hard for this to just be a fluke, to disappear, and hearing that it had progressed to such an extent was a sucker punch to my heart. I don't have tears for it yet, although they clog my throat as I write this, because I don't know what happens next. Surgery is a very strong possibility. There's just as much possibility that the doctor will tell us to continue to wait and watch. It's terrifying to consider that this lurking danger is moving slowly forward, trying to claim my son. I have no means to fight, except to continue to watch and pray. I have to depend entirely on God and medicine to save my baby... and it's such a helpless feeling.
Monday, January 10, 2011
aftermath: dealing with the diagnosis
Disclaimer: This story is all from my perspective. I can only speak of James' actions, not always the thoughts behind them. Someday, I hope he will tell his story, but until then, this is my version of it.
After James and I were educated about our son's diagnosis, my first reaction was basically, "handle with care." I tried to hold him closer and kiss him more, and appreciate every smile. I tried to think of all the things he could still do, rather than consider what he was unable to. Walking out of the doctor's office, James seemed angry. He made a few remarks that made me angry in return, because I felt like he was blaming Keagan for something that he could not control. I can only imagine how hard it is as a father to hear that your son can't play football, or even jump on a trampoline. Most of James' dreams for Keagan at that time, I think, involved a ball in his hands and a cheering crowd. I can't imagine having all of those hopes ripped from you in an instant.
As time has passed, James seems to have let go of a lot of his anger, and eventually we have learned to come together about everything. We've begun to balance each other out-- James doesn't allow me to coddle him overly, and I don't allow him to be harsh with him or feel sad that he can't play football-- we'll just channel his killer throwing arm over to baseball (which he can play)! It's still trial and error, because when Keagan starts holding his head and acting strangely, I assume something is wrong. James encourages me to trust my gut, but also to wait it out and look for more signs than just a headache. Our son is not broken, but we do live our lives with the possibility that one false move could change our lives forever. We make every effort to keep the quality of his life the same as any other little boy, although at his age there isn't much he has to miss out on... yet. Neither one of us is looking forward to the day when Keagan asks to sign up for pee-wee football, or when he goes to a friends' house and has to be told why he can't simply jump on the trampoline with his friends. We still argue about who has to field that conversation-- rock, paper, scissors at this point has the job falling to him, but I'm sure it will be challenged in the years to come. Since it's not an obvious issue, and I'm unsure how much pain it actually causes him day-to-day, I can imagine Keagan will try to defy us, but I pray that there is never a consequence for the natural and inevitable defiance of an already independent child trying to test his limits.
After James and I were educated about our son's diagnosis, my first reaction was basically, "handle with care." I tried to hold him closer and kiss him more, and appreciate every smile. I tried to think of all the things he could still do, rather than consider what he was unable to. Walking out of the doctor's office, James seemed angry. He made a few remarks that made me angry in return, because I felt like he was blaming Keagan for something that he could not control. I can only imagine how hard it is as a father to hear that your son can't play football, or even jump on a trampoline. Most of James' dreams for Keagan at that time, I think, involved a ball in his hands and a cheering crowd. I can't imagine having all of those hopes ripped from you in an instant.
As time has passed, James seems to have let go of a lot of his anger, and eventually we have learned to come together about everything. We've begun to balance each other out-- James doesn't allow me to coddle him overly, and I don't allow him to be harsh with him or feel sad that he can't play football-- we'll just channel his killer throwing arm over to baseball (which he can play)! It's still trial and error, because when Keagan starts holding his head and acting strangely, I assume something is wrong. James encourages me to trust my gut, but also to wait it out and look for more signs than just a headache. Our son is not broken, but we do live our lives with the possibility that one false move could change our lives forever. We make every effort to keep the quality of his life the same as any other little boy, although at his age there isn't much he has to miss out on... yet. Neither one of us is looking forward to the day when Keagan asks to sign up for pee-wee football, or when he goes to a friends' house and has to be told why he can't simply jump on the trampoline with his friends. We still argue about who has to field that conversation-- rock, paper, scissors at this point has the job falling to him, but I'm sure it will be challenged in the years to come. Since it's not an obvious issue, and I'm unsure how much pain it actually causes him day-to-day, I can imagine Keagan will try to defy us, but I pray that there is never a consequence for the natural and inevitable defiance of an already independent child trying to test his limits.
Saturday, January 8, 2011
journey to a diagnosis
I'll start at the beginning and go from there. Quick back story on us, if you don't know us very well-- James is 29, active duty Army, has been in for 4 years this month, did a year long tour to Afghanistan right after Keagan was born, and is now at his second duty station, Fort Bragg, NC (Fort Drum, NY before that). I'm Ashley, I'm 22, and I'm in school pursuing my associate's in medical assisting and then planning to get my nursing degree after that. James and I have been married for about 3 years and together for 3 1/2 (we met in basic training). Keagan is two years old now, and was born on October 29, 2008 in a huge snowstorm in NY after a power outage at the hospital (which made me soooo thrilled let me tell you). He is obsessed with Mickey Mouse, anything with wheels on it, daddy's video games, popcorn, and carrying every. single. stuffed. animal. around with him at all times. He loves to give hugs and kisses, and identifies EVERYTHING, even if he's wrong.
He seems like a completely normal boy, but I guess he's not. It's hard for me to accept that all the time, because he appears completely perfect, and what mom wants to consider that anything is wrong with her child? In January of 2009, just after James got home from Afghanistan, we started to notice that Keagan was acting as if he had headaches, crying more often, and seemed dizzy and disoriented as the day progressed, and he was falling down. A LOT. I'm talking like 40 times a day, for no reason, just step, step, faceplant; or even standing still, wobble, faceplant. He had been walking at this point for about 4 months with no noticeable balance issues, so when we noticed it, I just made him a routine appointment and took him to see his pediatrician on base. I assumed, worst case scenario, that he was like my brother and had some inner ear infections. The doctor did a thorough check of him and said that he was 100% healthy. And then she looked me in the eye, put her hands on his head and said, "take him to the emergency room right now. I've never had something like this turn out to be nothing, and I just have a feeling." Wide eyed and trembling, we went straight to Syracuse University Hospital, almost two hours away. We checked him in, and they did a sedated MRI on him. A few hours and MANY neurological tests later, a resident on the neuro service came in and said, "he has a Chiari Malformation." I asked what the heck that was, and he said something unintelligible that gave us the impression that it was some type of tumor that would require immediate surgery. Then he just WALKED OUT! A nurse, God bless her, came in a bit later, saw the panic on our faces, and went right out to Google the diagnosis for us. She came back and informed us (because as it turns out, this is a pretty rare condition, especially in such a young baby) that it was not a tumor, and while she couldn't say whether he'd need surgery or not, that the doctor had misinformed us.
What we began to uncover was this: "Chiari type 1 malformations (CM1) occur in the region where the brain and the spinal cord join. In this disorder, the portions of the brain called the cerebellum and/or brainstem lie lower than usual. Often, a portion of the cerebellum called the cerebellar tonsils protrudes out of the base of the skull into the spinal canal. This protrusion causes pressure in the brain, contributing to the symptoms people experience. The cause of CM1 is not known. Some CM1 cases are believed to be present at birth. There are many symptoms associated with CM1. These symptoms may include headaches, especially at the base of the skull, dizziness, double vision, weakness in the arms, and/or difficulty walking. When symptoms are present, they are often vague or nonspecific. As a result, the diagnosis of CM1 is often delayed until more severe symptoms present themselves or after current symptoms persist for some time." full text
When we got back to his pediatrician, she told us that it was not an extreme case, as the low lying portion of his brain was only 5-7mm descended. She told us to watch for seizures, muscle weakness, gave us concussion symptoms in case a hit was too hard, and taught us how to check for signs that he was worsening. Otherwise, it was basically a watch and wait type of diagnosis. We were told to follow up with MRIs every 6 months for the rest of his life, avoid contact sports and trampolines, and help him be as normal as possible. Many people have CMs and never have any idea, many people don't find out until much later in life, and many people are fully functional with zero progression for their entire lives. A year later, we are only beginning to understand how this will affect all of our lives in many different ways.
I'll post again soon with a more recent update, but I figure the back story is enough for one post.
He seems like a completely normal boy, but I guess he's not. It's hard for me to accept that all the time, because he appears completely perfect, and what mom wants to consider that anything is wrong with her child? In January of 2009, just after James got home from Afghanistan, we started to notice that Keagan was acting as if he had headaches, crying more often, and seemed dizzy and disoriented as the day progressed, and he was falling down. A LOT. I'm talking like 40 times a day, for no reason, just step, step, faceplant; or even standing still, wobble, faceplant. He had been walking at this point for about 4 months with no noticeable balance issues, so when we noticed it, I just made him a routine appointment and took him to see his pediatrician on base. I assumed, worst case scenario, that he was like my brother and had some inner ear infections. The doctor did a thorough check of him and said that he was 100% healthy. And then she looked me in the eye, put her hands on his head and said, "take him to the emergency room right now. I've never had something like this turn out to be nothing, and I just have a feeling." Wide eyed and trembling, we went straight to Syracuse University Hospital, almost two hours away. We checked him in, and they did a sedated MRI on him. A few hours and MANY neurological tests later, a resident on the neuro service came in and said, "he has a Chiari Malformation." I asked what the heck that was, and he said something unintelligible that gave us the impression that it was some type of tumor that would require immediate surgery. Then he just WALKED OUT! A nurse, God bless her, came in a bit later, saw the panic on our faces, and went right out to Google the diagnosis for us. She came back and informed us (because as it turns out, this is a pretty rare condition, especially in such a young baby) that it was not a tumor, and while she couldn't say whether he'd need surgery or not, that the doctor had misinformed us.
What we began to uncover was this: "Chiari type 1 malformations (CM1) occur in the region where the brain and the spinal cord join. In this disorder, the portions of the brain called the cerebellum and/or brainstem lie lower than usual. Often, a portion of the cerebellum called the cerebellar tonsils protrudes out of the base of the skull into the spinal canal. This protrusion causes pressure in the brain, contributing to the symptoms people experience. The cause of CM1 is not known. Some CM1 cases are believed to be present at birth. There are many symptoms associated with CM1. These symptoms may include headaches, especially at the base of the skull, dizziness, double vision, weakness in the arms, and/or difficulty walking. When symptoms are present, they are often vague or nonspecific. As a result, the diagnosis of CM1 is often delayed until more severe symptoms present themselves or after current symptoms persist for some time." full text
When we got back to his pediatrician, she told us that it was not an extreme case, as the low lying portion of his brain was only 5-7mm descended. She told us to watch for seizures, muscle weakness, gave us concussion symptoms in case a hit was too hard, and taught us how to check for signs that he was worsening. Otherwise, it was basically a watch and wait type of diagnosis. We were told to follow up with MRIs every 6 months for the rest of his life, avoid contact sports and trampolines, and help him be as normal as possible. Many people have CMs and never have any idea, many people don't find out until much later in life, and many people are fully functional with zero progression for their entire lives. A year later, we are only beginning to understand how this will affect all of our lives in many different ways.
I'll post again soon with a more recent update, but I figure the back story is enough for one post.
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