there is so much wonderful news to share that I hardly know where to begin! let me start by saying that the Lord has been so faithful to us. ever so much more than I could ever begin to deserve in three lifetimes of living like Mother Theresa. I have been given the desire of my heart-- TWO wonderful, healthy (did I ever think I'd say that about Keagan?), flourishing sons (one due in November). I am overwhelmed.
first of all, Keagan's Chiari Malformation has stabilized. there are no signs of ill effects, other than of course his balance and the issues we already manage on a regular basis. we have another check up and MRI in October to take another peek, but our neurosurgeon sees no reason to consider an operation at this point. he also firmly ruled out Autism in any form!
his speech is improving by leaps and bounds, to say the very, very least. anyone who has known him the past year would agree, he's barely recognizable in his speech patterns from the time he lost his speech abilities last winter until today. he continues to work with a speech therapist weekly, and James and I work with him consistently at home to help move him forward. I have zero complaints, because the amount of work that we have put into him is exponentially showing, and who could say that their child isn't a worthwhile investment of time and effort?
we were seen by a geneticist, who said that his chromosomal deletion was very small-- we're still waiting on test results of James and me to see if they hold any significance or not, but they would answer the question of "why" he struggles with his speech. while that answer would be nice to pinpoint, he is improving so much, as I mentioned above, so it's not really a 911 priority for us mentally.
and finally, and best of all, Keagan went to the cardiologist today. at almost exactly 3 months post open heart surgery, the doctor says that there are NO SIGNS of damage remaining. the thickening f the walls of his heart is GONE, and while he has a "soft" heart murmur-- that may never go away-- he is 100% within normal range of a normal child. what a beautiful word to hear-- normal!
I firmly believe that all of the prayers sent up on our behalf have brought us to this point. we have had the most wonderful support through our journey to Death's door and back, and I thank every single person who has been a part of our support system. it is world wide!
it absolutely blows my mind to consider that less than a year ago, we had ZERO hope for Keagan to live a normal life neurologically, and 6 months ago, we were looking at an impending death sentence with his heart beginning to fail-- at TWO YEARS OLD. now? we're considering little league next spring. he starts school after his 3rd birthday. he will be a big brother soon. he's potty training (hallelujah!!) successfully. he's singing songs, learning his colors, helping with household chores (he loves to fold laundry and wash dishes... we'll work on effectiveness later). to say, "but he seems fine," is now a wonderful, wonderful statement-- because while he does stand at risk of progression with his CM, and he is still at risk for heart problems when he is older... right now, today, he IS fine. and that's all that this mother could dream of or hope for.
Zephaniah 3:17 (NIV): "The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in His love He will no longer rebuke you, but will rejoice over you with singing."
Psalm 17: 6-7 (NIV): "I call on you, my God, for you will answer me; turn your ear to me and hear my prayer. Show me the wonders of your heart's love, you who save by your right hand those who take refuge in you from their foes."
Wednesday, August 10, 2011
Wednesday, June 15, 2011
surviving the storm.
It's been roughly a month since surgery. That's... a rough estimate, and a rough journey-- in some, but not all, ways.
Physically, Keagan is healing GREAT. His echo last week shows that his damage has gone from 59% down to 38%, and they expect within the next month, that that number cuts in half again, and then hopefully again once more within the next few months. As I've mentioned, there are still issues, BUT, his "risk" of major heart problems is well under 5% until he hits puberty. At that point, we may have some complications, but I've never felt more relieved that my little man is only 2 1/2. I know he'll grow in a flash, but having 10+ years of free and clear (fingers crossed) heart function is beautiful! This time a month ago, we had a solid chance of getting through the summer without any issues (by issues I refer to heart failure, heart attacks, and the like) and not much past that.
Emotionally, he is still recovering. He still has a fear of anyone wearing scrubs, and endures his check ups with a war-weary look on his face that breaks my heart. He's learning (and I am learning) how to deal with a boy who feels GOOD all the time, so there are a few more temper flares than usual from both of us, a little less snuggling (which I miss, but I can give up to see him flourish), and a LOT more time outs as he begins to moderate his energy with what is acceptable in public or at home. We're spending a lot of time at the pool, where he can splash and swim and get out tons of energy at once, and taking a lot of walks as a family to explore and stay active without acting like a crazy child.
His incision is still very visible, but has closed up completely and is healing well. The doctor suggested Mederma, or some other scar-hiding topical medicine, but we've decided against it. I personally LOVE his scar, even though it makes my heart ache a bit, it means that he's alive, and will continue to be. The jagged line across his back holds the same status to me as my c-section scar and stretch marks-- they represent the life of a boy who is infinitely precious to me and many others around him. Maybe we had to work a little harder and hurt a little more for him to get here and to stay here, but by the grace of God and modern medicine, he's living, and for that I am infinitely, wordlessly, tearfully blessed and grateful.
And so, on June 15, 2011, I claim for my son that we have walked through the Valley of the Shadow of Death and we have come through the other side. Just writing that, I get tears in my eyes, but I proclaim it as truth from the very depths of my being. We did not get lucky-- we have been absolutely covered in prayer every step of this journey, and I have no doubt that while I did not personally feel God's presence in the hospital room, and while I felt absolutely empty and alone, my baby was never alone and was cradled carefully in the arms of Christ from start to finish. For that matter, as I say that I felt alone, and I even struggled with feeling angry, I have no doubt that I was NOT alone any more than Keagan was, and that I was carried through this experience by a strength that was not possibly my own. Had I walked through this of my own strength, I surely would have fallen apart much more than I did, and I believe that Keagan, and also my unborn child would have both suffered greatly if I hadn't had to journey through for months before surgery to surrender the situation to God.
Physically, Keagan is healing GREAT. His echo last week shows that his damage has gone from 59% down to 38%, and they expect within the next month, that that number cuts in half again, and then hopefully again once more within the next few months. As I've mentioned, there are still issues, BUT, his "risk" of major heart problems is well under 5% until he hits puberty. At that point, we may have some complications, but I've never felt more relieved that my little man is only 2 1/2. I know he'll grow in a flash, but having 10+ years of free and clear (fingers crossed) heart function is beautiful! This time a month ago, we had a solid chance of getting through the summer without any issues (by issues I refer to heart failure, heart attacks, and the like) and not much past that.
Emotionally, he is still recovering. He still has a fear of anyone wearing scrubs, and endures his check ups with a war-weary look on his face that breaks my heart. He's learning (and I am learning) how to deal with a boy who feels GOOD all the time, so there are a few more temper flares than usual from both of us, a little less snuggling (which I miss, but I can give up to see him flourish), and a LOT more time outs as he begins to moderate his energy with what is acceptable in public or at home. We're spending a lot of time at the pool, where he can splash and swim and get out tons of energy at once, and taking a lot of walks as a family to explore and stay active without acting like a crazy child.
His incision is still very visible, but has closed up completely and is healing well. The doctor suggested Mederma, or some other scar-hiding topical medicine, but we've decided against it. I personally LOVE his scar, even though it makes my heart ache a bit, it means that he's alive, and will continue to be. The jagged line across his back holds the same status to me as my c-section scar and stretch marks-- they represent the life of a boy who is infinitely precious to me and many others around him. Maybe we had to work a little harder and hurt a little more for him to get here and to stay here, but by the grace of God and modern medicine, he's living, and for that I am infinitely, wordlessly, tearfully blessed and grateful.
And so, on June 15, 2011, I claim for my son that we have walked through the Valley of the Shadow of Death and we have come through the other side. Just writing that, I get tears in my eyes, but I proclaim it as truth from the very depths of my being. We did not get lucky-- we have been absolutely covered in prayer every step of this journey, and I have no doubt that while I did not personally feel God's presence in the hospital room, and while I felt absolutely empty and alone, my baby was never alone and was cradled carefully in the arms of Christ from start to finish. For that matter, as I say that I felt alone, and I even struggled with feeling angry, I have no doubt that I was NOT alone any more than Keagan was, and that I was carried through this experience by a strength that was not possibly my own. Had I walked through this of my own strength, I surely would have fallen apart much more than I did, and I believe that Keagan, and also my unborn child would have both suffered greatly if I hadn't had to journey through for months before surgery to surrender the situation to God.
Friday, June 3, 2011
long overdue hospital recap
I've been turning this around in my head for about a week. I'm not sure why this post is tough for me, maybe because of the sheer volume of a post that I know I'm starting, and maybe I'm a bit post-traumatic after everything, and just now realizing that I'm not past all of it quite yet. I'm going back through all of my Facebook posts, because that's the only place I was updating at the time (I don't think I even answered many phone calls or texts, but I did get them and appreciated all the encouraging words).
We went to Duke the night before surgery, after some car trouble and just general insanity, and got checked in to our hotel. By the time we actually arrived out there, I had time to give Keagan his bath, snuggle him for a few minutes, and then we were all off to bed. We woke up around 5:30 the next morning (5/17, for those looking at a calendar), got ready, and headed out to the hospital. We checked in to the surgical ward around 7:30. Fairly quickly, we got pulled back into an exam room, Keagan got his vitals checked, a general exam, and then some pre-op sedation (nasty liquid sedative). He's had the medication before (before his cardiac MRI), and it made him very cranky, so I was sort of expecting that. This time? He was a total space case. I took a picture of him, and he (as usual) had to inspect it, and he said "I like that Keega, he a bug." Once the sedatives had kicked in fully, the anesthesologist had me put on the "bunny suit" and mask, and carry him back to the operating room myself. Their theory was that if he never had the fearful experience of being torn away from mom, he would go under more peacefully, and therefore wake up in a more peaceful state. It was such a long walk to the operating room. When we finally got back to the room, I sat him down on the table and crouched down to his eye level. As I kept eye contact with him, I just kept repeating to him how very much I loved him and stroking his cheek, around the mask, as the doctors worked to fully sedate him. Once he went under, I had this moment of hysteria and almost lost my mind. Even though I didn't say a word, I think the OR staff was assuming I'd freak out, but I kept myself in check and didn't say or do anything dramatic. I just kissed his cheek and left my entire heart on the operating table. I can't explain how that walk back to the room where my mom was felt. If any parents remember the first time they left their baby with a sitter.... it was like that... on drugs, and multiplied infinitely.
My mom and I went to get coffee and breakfast while they did the blood work and all the pre-op work ups. Finally, around 9:40, they started the actual surgery. They called out to the waiting room every hour, to let us know that everything was still going smoothly and progressing. After about two hours, they called to say they were starting to wrap up, and that he would be headed to the Pediatric Cardiac Intensive Care Unit (PCICU) when he was finished. We went to the waiting room on the PCICU ward, and around 12:30, the surgeon came out to speak with us. He said that there were no complications, the chest tube was in, and he was no longer intubated. He mentioned in passing that he was "making a little noise" (called strider) when he was breathing, so they had him on heli-ox, a mixture of helium and oxygen, to soothe his throat and keep his oxygen saturation up.
When I finally got to go back to see him around 1:30, his oxygen levels were low, his blood pressure was high, and he was hooked up to so many machines that I just felt like I couldn't breathe. Seeing my baby so pale and small, covered in tubes and wires and Betadine and blood... I fully understand how and why parents become angry with God over their children being sick.
He started to wake up off and on over the course of the day, although his breathing didn't improve much, and his blood pressure remained high. He opened his eyes when I spoke to him, but he wasn't really clear headed and present. We sent a request out over Facebook that evening, because the little girl in the unit next to us was very clearly passing away. She actually ended up going to be with Jesus shortly after we asked for prayers for the other family. I can't imagine the heartbreak, although I saw it.
Finally, after dinner time, he woke up, and wanted Daddy (who was on his way) and cartoons. He was constantly trying to pull his oxygen mask off (I think it made his face cold), so they had to keep him pretty sedated at that point. I went back to the hotel with my mom for the night around 9:30, leaving James to cover the overnight shift with him, in case he woke up and got scared. I didn't think I'd be able to sleep, but as soon as I laid down, I was out like a light. I think my mom said I was talking and just trailed off. Between the stress of the ordeal and being 14 weeks pregnant, I had nothing left.
Overnight, he was really agitated and in a lot of pain once the surgical anesthesia wore off. Apparently he spent about 2 hours just screaming and crying because his pain level was so high. The next day, he got his chest tube and arterial IV (in his neck) taken out, and again spent a lot of time in a LOT of pain. Nothing will make you feel more helpless as a parent than to not only have to see the pain your child is in, but to not be able to hold him and give him comfort. After about 30 hours of not holding him, once the tubes were all out, I felt a lot more complete with him in my arms. As soon as I picked him up and we sat back in the recliner by his bedside, he slumped into my shoulder and fell asleep immediately. My little fighter had no more pep left, from fighting and being in such a high state of pain. After he rested a bit, he took a walk around the unit, then spent the rest of the day in an extreme amount of pain, despite extra medications.
We had initially been told he might go home on the 19th, but due to his extreme pain, and the fact that he wasn't eating anything or drinking very much, they ended up moving us to the regular unit to keep observing him. He perked up somewhat, but was still refusing food and in a lot of pain. He was walking around more and talking more, although I still hadn't seen him smile yet.
He was improving fairly steadily, and after 2 days on the regular unit, with still no improvement as far as eating, and only a few minor set backs with breakthrough pain, we ended up being discharged from the hospital on 5/20. The doctors thought he would eat and recover better in his own environment, and we agreed that that was probably the case, although I was still worried. So we gathered up all of our stuff, checked out of the hospital and the hotel, and headed back to Fort Bragg. He ate a little in the car, slept a little, and seemed generally better as soon as he got to put his shoes on to leave the hospital.
I know I've basically skipped any emotion in all of this. I don't know what to say about it. I dealt through a range of emotions-- even when things started to go well for Keagan, I was just discouraged. I couldn't let myself cry in front of him, and when I wasn't with him, I just collapsed from exhaustion. I can't explain why I couldn't feel relief about Keagan's surgery going well, I was just traumatized from the entire exhausting experience, I think. My son went through hell, and I couldn't help him what so ever. I can't even say that I felt God during the days in the hospital, I just felt empty. I'm thankful that God answered all of our prayers, and now, seeing Keagan play, and knowing he's not a ticking time bomb, headed for a heart attack by age 3, is a sweet relief. I was telling someone today that we won't be using Mederma or anything to make his scar disappear. The scars he bears represent his life, just as much as my c section scar represents his life. We both bear the scars to prove that his life continues.
He gets better daily, though he's still tired a lot, and fussy at random moments, and his blood pressure is still a bit higher than normal-- though it's lower than it was before surgery. The wounds continue to heal, and we are hopeful that his surgery was completely successful and that he won't be in the 20% of children who have further issue after the repair has been made. We're still under close watch by the cardiologist, and will continue to be for an unknown amount of time. There are still some markers that show he's not at 100%, and as I have mentioned before, he did not get all of his issues in his heart repaired, but the major issues have been addressed.
As far as his neuro, we got his case transfered to Duke Neurology, and he will be evaluated by a neurosurgeon on July 20 (not FOR surgery, but if it's needed, it can be done with continuity of care from the same doctor). We are waiting for Tricare to process the paperwork for the genetics appointment. At some point this summer, we hope to have a solid diagnosis; whether his Chiari is an issue, whether he has an Autism spectrum disorder, what is going on with the chromosomal abnormalities, and what we can do about it. That's another uphill battle that I don't think can be easily resolved by surgery, but I'll continue to fight for the proper diagnosis for Keagan and to form a treatment plan to help him overcome his issues.
We went to Duke the night before surgery, after some car trouble and just general insanity, and got checked in to our hotel. By the time we actually arrived out there, I had time to give Keagan his bath, snuggle him for a few minutes, and then we were all off to bed. We woke up around 5:30 the next morning (5/17, for those looking at a calendar), got ready, and headed out to the hospital. We checked in to the surgical ward around 7:30. Fairly quickly, we got pulled back into an exam room, Keagan got his vitals checked, a general exam, and then some pre-op sedation (nasty liquid sedative). He's had the medication before (before his cardiac MRI), and it made him very cranky, so I was sort of expecting that. This time? He was a total space case. I took a picture of him, and he (as usual) had to inspect it, and he said "I like that Keega, he a bug." Once the sedatives had kicked in fully, the anesthesologist had me put on the "bunny suit" and mask, and carry him back to the operating room myself. Their theory was that if he never had the fearful experience of being torn away from mom, he would go under more peacefully, and therefore wake up in a more peaceful state. It was such a long walk to the operating room. When we finally got back to the room, I sat him down on the table and crouched down to his eye level. As I kept eye contact with him, I just kept repeating to him how very much I loved him and stroking his cheek, around the mask, as the doctors worked to fully sedate him. Once he went under, I had this moment of hysteria and almost lost my mind. Even though I didn't say a word, I think the OR staff was assuming I'd freak out, but I kept myself in check and didn't say or do anything dramatic. I just kissed his cheek and left my entire heart on the operating table. I can't explain how that walk back to the room where my mom was felt. If any parents remember the first time they left their baby with a sitter.... it was like that... on drugs, and multiplied infinitely.
My mom and I went to get coffee and breakfast while they did the blood work and all the pre-op work ups. Finally, around 9:40, they started the actual surgery. They called out to the waiting room every hour, to let us know that everything was still going smoothly and progressing. After about two hours, they called to say they were starting to wrap up, and that he would be headed to the Pediatric Cardiac Intensive Care Unit (PCICU) when he was finished. We went to the waiting room on the PCICU ward, and around 12:30, the surgeon came out to speak with us. He said that there were no complications, the chest tube was in, and he was no longer intubated. He mentioned in passing that he was "making a little noise" (called strider) when he was breathing, so they had him on heli-ox, a mixture of helium and oxygen, to soothe his throat and keep his oxygen saturation up.
When I finally got to go back to see him around 1:30, his oxygen levels were low, his blood pressure was high, and he was hooked up to so many machines that I just felt like I couldn't breathe. Seeing my baby so pale and small, covered in tubes and wires and Betadine and blood... I fully understand how and why parents become angry with God over their children being sick.
He started to wake up off and on over the course of the day, although his breathing didn't improve much, and his blood pressure remained high. He opened his eyes when I spoke to him, but he wasn't really clear headed and present. We sent a request out over Facebook that evening, because the little girl in the unit next to us was very clearly passing away. She actually ended up going to be with Jesus shortly after we asked for prayers for the other family. I can't imagine the heartbreak, although I saw it.
Finally, after dinner time, he woke up, and wanted Daddy (who was on his way) and cartoons. He was constantly trying to pull his oxygen mask off (I think it made his face cold), so they had to keep him pretty sedated at that point. I went back to the hotel with my mom for the night around 9:30, leaving James to cover the overnight shift with him, in case he woke up and got scared. I didn't think I'd be able to sleep, but as soon as I laid down, I was out like a light. I think my mom said I was talking and just trailed off. Between the stress of the ordeal and being 14 weeks pregnant, I had nothing left.
Overnight, he was really agitated and in a lot of pain once the surgical anesthesia wore off. Apparently he spent about 2 hours just screaming and crying because his pain level was so high. The next day, he got his chest tube and arterial IV (in his neck) taken out, and again spent a lot of time in a LOT of pain. Nothing will make you feel more helpless as a parent than to not only have to see the pain your child is in, but to not be able to hold him and give him comfort. After about 30 hours of not holding him, once the tubes were all out, I felt a lot more complete with him in my arms. As soon as I picked him up and we sat back in the recliner by his bedside, he slumped into my shoulder and fell asleep immediately. My little fighter had no more pep left, from fighting and being in such a high state of pain. After he rested a bit, he took a walk around the unit, then spent the rest of the day in an extreme amount of pain, despite extra medications.
We had initially been told he might go home on the 19th, but due to his extreme pain, and the fact that he wasn't eating anything or drinking very much, they ended up moving us to the regular unit to keep observing him. He perked up somewhat, but was still refusing food and in a lot of pain. He was walking around more and talking more, although I still hadn't seen him smile yet.
He was improving fairly steadily, and after 2 days on the regular unit, with still no improvement as far as eating, and only a few minor set backs with breakthrough pain, we ended up being discharged from the hospital on 5/20. The doctors thought he would eat and recover better in his own environment, and we agreed that that was probably the case, although I was still worried. So we gathered up all of our stuff, checked out of the hospital and the hotel, and headed back to Fort Bragg. He ate a little in the car, slept a little, and seemed generally better as soon as he got to put his shoes on to leave the hospital.
I know I've basically skipped any emotion in all of this. I don't know what to say about it. I dealt through a range of emotions-- even when things started to go well for Keagan, I was just discouraged. I couldn't let myself cry in front of him, and when I wasn't with him, I just collapsed from exhaustion. I can't explain why I couldn't feel relief about Keagan's surgery going well, I was just traumatized from the entire exhausting experience, I think. My son went through hell, and I couldn't help him what so ever. I can't even say that I felt God during the days in the hospital, I just felt empty. I'm thankful that God answered all of our prayers, and now, seeing Keagan play, and knowing he's not a ticking time bomb, headed for a heart attack by age 3, is a sweet relief. I was telling someone today that we won't be using Mederma or anything to make his scar disappear. The scars he bears represent his life, just as much as my c section scar represents his life. We both bear the scars to prove that his life continues.
He gets better daily, though he's still tired a lot, and fussy at random moments, and his blood pressure is still a bit higher than normal-- though it's lower than it was before surgery. The wounds continue to heal, and we are hopeful that his surgery was completely successful and that he won't be in the 20% of children who have further issue after the repair has been made. We're still under close watch by the cardiologist, and will continue to be for an unknown amount of time. There are still some markers that show he's not at 100%, and as I have mentioned before, he did not get all of his issues in his heart repaired, but the major issues have been addressed.
As far as his neuro, we got his case transfered to Duke Neurology, and he will be evaluated by a neurosurgeon on July 20 (not FOR surgery, but if it's needed, it can be done with continuity of care from the same doctor). We are waiting for Tricare to process the paperwork for the genetics appointment. At some point this summer, we hope to have a solid diagnosis; whether his Chiari is an issue, whether he has an Autism spectrum disorder, what is going on with the chromosomal abnormalities, and what we can do about it. That's another uphill battle that I don't think can be easily resolved by surgery, but I'll continue to fight for the proper diagnosis for Keagan and to form a treatment plan to help him overcome his issues.
Wednesday, May 11, 2011
pre-surgery
I just got a phone call from the neurologist. His EEG (seizure test) was completely normal (ruling out Landau Kleffner Syndrome), but there were some chromosomal abnormalities found that may or may not be of any significance. We are going to schedule an appointment to see a geneticist, who can interpret the tests and decide if the results are a problem or not. The neuro is also still suspecting an end diagnosis of some form of Autism, but we will see.
As a reminder of dates, this Friday is Keagan's pre-op workup for heart surgery. The actual surgery is scheduled for Monday, May 16. We will be spending roughly a week at Duke Children's Hospital, and are estimating that Keagan will be on life support for about half of that time.
I wrote this on Sunday, not intending to share it, but I feel like I should share some of the emotion that I'm experiencing leading into surgery. We are all deeply appreciative of the prayers being sent our way, and ask that they only intensify on our behalf in the coming days.
Moment of honesty: I'm under attack this Mother's Day. Every snuggle and kiss makes me infinitely grateful for this little person who calls me mommy (sometimes, ha) and likes to hold my hand... but there's this dark, awful thought that keeps worming its way into my mind, "what if this is your last mother's day with him?" "let's face it, the worst could happen. you could lose your child next week."
For months now, I've refused to give credit to those thoughts. I have refused to allow that reality to enter my consciousness, knowing that if I did, I would be crippled by fear and sadness and lose every scrap of strength I've clung to for the past year or so. But with a week to go before surgery, I find myself less and less able to push the bad thoughts away 100% of the time. I was in the car this morning and I began to cry to myself, trying NOT to picture my life without Keagan, when I realized something precious. We are facing the possibility of death and the grave, but we are facing it as children of God. God who DEFEATED death and the grave and rose victoriously to give LIFE. So with my typical barely restrained tears, and my constantly trembling knees, I am standing in the gap for my son, trusting, no matter how much I fear the opposite, that God will answer the cry of my heart, and heal my child. I accept that there is a chance that Keagan will only find healing in the arms of God, but I have hope that he will be back in my own arms AND be healed to live a full and wonderful life.
"The thief comes only to steal and kill and destroy; I came that they may have life, and life abundantly." --John 10:10
As a reminder of dates, this Friday is Keagan's pre-op workup for heart surgery. The actual surgery is scheduled for Monday, May 16. We will be spending roughly a week at Duke Children's Hospital, and are estimating that Keagan will be on life support for about half of that time.
I wrote this on Sunday, not intending to share it, but I feel like I should share some of the emotion that I'm experiencing leading into surgery. We are all deeply appreciative of the prayers being sent our way, and ask that they only intensify on our behalf in the coming days.
Moment of honesty: I'm under attack this Mother's Day. Every snuggle and kiss makes me infinitely grateful for this little person who calls me mommy (sometimes, ha) and likes to hold my hand... but there's this dark, awful thought that keeps worming its way into my mind, "what if this is your last mother's day with him?" "let's face it, the worst could happen. you could lose your child next week."
For months now, I've refused to give credit to those thoughts. I have refused to allow that reality to enter my consciousness, knowing that if I did, I would be crippled by fear and sadness and lose every scrap of strength I've clung to for the past year or so. But with a week to go before surgery, I find myself less and less able to push the bad thoughts away 100% of the time. I was in the car this morning and I began to cry to myself, trying NOT to picture my life without Keagan, when I realized something precious. We are facing the possibility of death and the grave, but we are facing it as children of God. God who DEFEATED death and the grave and rose victoriously to give LIFE. So with my typical barely restrained tears, and my constantly trembling knees, I am standing in the gap for my son, trusting, no matter how much I fear the opposite, that God will answer the cry of my heart, and heal my child. I accept that there is a chance that Keagan will only find healing in the arms of God, but I have hope that he will be back in my own arms AND be healed to live a full and wonderful life.
"The thief comes only to steal and kill and destroy; I came that they may have life, and life abundantly." --John 10:10
Tuesday, April 19, 2011
date set, date change
We finally got heart surgery scheduled, my mom bought her plane ticket out here, then came the phone call no one wants to hear! Another baby has to have urgent surgery and will be taking our slot. That's frustrating, but I feel for the family dealing with the emergency situation. Ours is hard enough, without the 911 rush to it. So, now, surgery is scheduled for May 16, with pre-op on May 13. Daddy will be spending his 30th birthday (May 17) watching his boy on life support. I'm sure that will be a blast. We're going to celebrate early and make it worth remembering, since our hospital stay will probably be something we'll want to forget.
We got a new referral for a new neurologist, but they put the wrong doctor's name on it, so that's a work in progress, and moving slow. Keagan has had a stretch of pretty good days lately, so that's been a blessing for sure. Yesterday was a little rough, he fell a LOT, but he didn't seem to be in much pain, just agitated and irritable at times. His speech is getting better in some ways, and still degenerating in others. He still won't say mama, but I hear all the love and admiration I could ask for when he calls me "da" so I'll take it for now, and pray for a day when he can call me mommy again.
Speech therapy seems to be heading in a good direction. We're working on some alternative methods of communication, called PEX boards (I can't currently remember what it stands for)-- pictures that he can point to and ask for things. I took pictures of common household items (none of which he struggles with) for him to start out with and get used to. Then, we'll move on to other things that he DOES struggle with. I'm also looking into some sign language, hoping that might help as well, while still encouraging his verbal skills.
Not much to report otherwise medically. We're all hanging in, trying to get through this experience before we start getting ready for baby number two (due in November). We're trying to maintain some sense of normalcy in an upside down world, and that's all we can do for now.
We got a new referral for a new neurologist, but they put the wrong doctor's name on it, so that's a work in progress, and moving slow. Keagan has had a stretch of pretty good days lately, so that's been a blessing for sure. Yesterday was a little rough, he fell a LOT, but he didn't seem to be in much pain, just agitated and irritable at times. His speech is getting better in some ways, and still degenerating in others. He still won't say mama, but I hear all the love and admiration I could ask for when he calls me "da" so I'll take it for now, and pray for a day when he can call me mommy again.
Speech therapy seems to be heading in a good direction. We're working on some alternative methods of communication, called PEX boards (I can't currently remember what it stands for)-- pictures that he can point to and ask for things. I took pictures of common household items (none of which he struggles with) for him to start out with and get used to. Then, we'll move on to other things that he DOES struggle with. I'm also looking into some sign language, hoping that might help as well, while still encouraging his verbal skills.
Not much to report otherwise medically. We're all hanging in, trying to get through this experience before we start getting ready for baby number two (due in November). We're trying to maintain some sense of normalcy in an upside down world, and that's all we can do for now.
Tuesday, April 5, 2011
the title of this is always update...
I don't have answers for neuro. Only more questions. I almost don't even want to post about it-- I really haven't talked about it much. It was a very confusing, misleading, frustrating appointment. I do not like the doctor we got. He's every mom's nightmare-- every word I said was wrong, or I felt like he thought I was lying a few times... I don't want to assume that's what he thought, but that was my impression. He kept saying things like, "well, obviously he's not paralyzed," and I just wanted to whack him upside the head and shake him. I KNOW he's not paralyzed, or retarded, or Autistic, or having seizures... can you tell me what IS going on? Because what I know, adds up to not much.
They did a LOT of blood work, and we go back on Thursday to have an EEG done, which checks for seizure activity (he's never had a seizure, FYI). Thank God for good insurance I guess, because this isn't coming out of our pockets, and we're even lucky enough that we'll be reimbursed for travel expenses at some point.
I'm taking him back to the pediatrician on Friday, to get a copy of his MRI report that was done this past Wednesday, and start a new referral process to get a second opinion for his neurology. I'm not going to let this be the end, I feel I'm getting the brush off from his doctor and I'm NOT okay with it.
As for his cardiac team, we're still having a great experience with them. I have zero complaints, except that we have to see them in the first place, frankly that part blows. His cardiologist carves out as much time for me as I ever might need, answers all my questions, no matter how irrelevant or silly I know they are, and always reassures me that he's invested in this case to the end. Have I mentioned lately I adore his cardiac team? Because, really. We're having polar opposite experiences at Duke (good) vs. UNC (not so good).
Anyway, the only update I have for cardio is that surgery is a go. His blood pressure continues to be too high, and factoring in the hypertrophy (muscle hardening) of his heart that has already formed, there is no reason to wait until he's older to do the surgery. I guess there is some flex time that can happen, meaning it's not an emergency right now, but there's a "line" into BAD territory that no one wants to cross-- risking heart failure, heart attacks, and all kinds of other bad business I'd love to avoid with my child. Anyway, we are scheduling his surgery this week. I'm glued to my phone, waiting for a call from the main hospital once they get the schedule of the doctor who'll be doing the surgery (the head of pediatric cardiology, by the way!). But it hasn't happened yet, so all I know is that it will be soonish.
As for Keagan himself, he seems fine. He's had a good run lately, with fewer bad days, and speech therapy seems to be going well. They're just starting with him, but I really like the game plan they have for him, and his EIC (early intervention) team is excellent and they care so much about us personally. He seems to be more tired and more snuggly lately-- that could be from his heart working too hard, or just a growth spurt, or just my baby knowing on some spiritual level that something major is changing in his life. Either way, I'm doing all that I can to hold him when he asks for it, and give him the endless supply of hugs and kisses he wants.
As for me personally, I have my moments of really losing my mind. The night before a procedure, no matter how simple, is the worst for me. I cry, I don't sleep, I worry, I try to pray, and I inevitably post some heartbreaking facebook status begging for prayer support. I have no words when I pray for Keagan. I just cry in my heart and I know that God knows what I am feeling. It's taking a new level to my faith, to have to surrender my son, who is my entire life, to God and hope for the best. My worst nightmare is losing him, even though I know beyond a shadow of a doubt that if he sees Jesus before I do, that we will be reunited again. It's still an impossible situation to keep a hold of your sanity, not knowing which side of Heaven your child will gain relief from his pain on. But I have so many people, joining with me, to bang on the gates of Heaven and BEG God for my son's life. I've only used that phrase to my mom, in a random crying fit in my driveway one day. And when we were in Wilmington a few weeks ago, a woman prayed the EXACT phrase of "banging on the gates of Heaven and begging for Keagan's life," so I KNOW that our prayers are being heard. I just know that Keagan IS being actively held in the arms of a loving God, who has amazing plans for him. I'm not confident of much in my life right now, there is a lot of fear and uncertainty, but I am confident that God knows better than me, that He has a plan for this situation, and that He has NOT abandoned me or Keagan as we walk through the valley of the shadow of death.
They did a LOT of blood work, and we go back on Thursday to have an EEG done, which checks for seizure activity (he's never had a seizure, FYI). Thank God for good insurance I guess, because this isn't coming out of our pockets, and we're even lucky enough that we'll be reimbursed for travel expenses at some point.
I'm taking him back to the pediatrician on Friday, to get a copy of his MRI report that was done this past Wednesday, and start a new referral process to get a second opinion for his neurology. I'm not going to let this be the end, I feel I'm getting the brush off from his doctor and I'm NOT okay with it.
As for his cardiac team, we're still having a great experience with them. I have zero complaints, except that we have to see them in the first place, frankly that part blows. His cardiologist carves out as much time for me as I ever might need, answers all my questions, no matter how irrelevant or silly I know they are, and always reassures me that he's invested in this case to the end. Have I mentioned lately I adore his cardiac team? Because, really. We're having polar opposite experiences at Duke (good) vs. UNC (not so good).
Anyway, the only update I have for cardio is that surgery is a go. His blood pressure continues to be too high, and factoring in the hypertrophy (muscle hardening) of his heart that has already formed, there is no reason to wait until he's older to do the surgery. I guess there is some flex time that can happen, meaning it's not an emergency right now, but there's a "line" into BAD territory that no one wants to cross-- risking heart failure, heart attacks, and all kinds of other bad business I'd love to avoid with my child. Anyway, we are scheduling his surgery this week. I'm glued to my phone, waiting for a call from the main hospital once they get the schedule of the doctor who'll be doing the surgery (the head of pediatric cardiology, by the way!). But it hasn't happened yet, so all I know is that it will be soonish.
As for Keagan himself, he seems fine. He's had a good run lately, with fewer bad days, and speech therapy seems to be going well. They're just starting with him, but I really like the game plan they have for him, and his EIC (early intervention) team is excellent and they care so much about us personally. He seems to be more tired and more snuggly lately-- that could be from his heart working too hard, or just a growth spurt, or just my baby knowing on some spiritual level that something major is changing in his life. Either way, I'm doing all that I can to hold him when he asks for it, and give him the endless supply of hugs and kisses he wants.
As for me personally, I have my moments of really losing my mind. The night before a procedure, no matter how simple, is the worst for me. I cry, I don't sleep, I worry, I try to pray, and I inevitably post some heartbreaking facebook status begging for prayer support. I have no words when I pray for Keagan. I just cry in my heart and I know that God knows what I am feeling. It's taking a new level to my faith, to have to surrender my son, who is my entire life, to God and hope for the best. My worst nightmare is losing him, even though I know beyond a shadow of a doubt that if he sees Jesus before I do, that we will be reunited again. It's still an impossible situation to keep a hold of your sanity, not knowing which side of Heaven your child will gain relief from his pain on. But I have so many people, joining with me, to bang on the gates of Heaven and BEG God for my son's life. I've only used that phrase to my mom, in a random crying fit in my driveway one day. And when we were in Wilmington a few weeks ago, a woman prayed the EXACT phrase of "banging on the gates of Heaven and begging for Keagan's life," so I KNOW that our prayers are being heard. I just know that Keagan IS being actively held in the arms of a loving God, who has amazing plans for him. I'm not confident of much in my life right now, there is a lot of fear and uncertainty, but I am confident that God knows better than me, that He has a plan for this situation, and that He has NOT abandoned me or Keagan as we walk through the valley of the shadow of death.
Thursday, March 24, 2011
cardiac MRI
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.
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.
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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