He counted to five last night.
Four years and two months old, and my child counted to five.
This wouldn't be a source of celebration for most people. We aren't most people. We deal with sensory, auditory, emotional, and physical disorders every hour of the day. We walk a tightrope between trying to give him a normal life and childhood, and trying to cope with what so clearly is not normal.
In trying to cope, we take deep breaths. We take time outs. We repeat our instructions A LOT. We carry gun-range style headphones in the diaper bag for loud, overwhelming situations. We make a lot of eye contact when we speak. We have a lot of alone time when he wants it, and a lot of snuggles when he wants them as well. We cry, we rack our brains for what we could do better, we change up the routine, keep the routine the same, research, read, pray, hope. We try to be the best we can, and I feel like I fail so often.
We also dance. We laugh. We wiggle our butts at random. We read books, and giggle, and color, and eat cookies. We spend time with our friends and each other. We try to learn new things, and we encourage him when he does something well-- so much so that I hear him constantly encouraging others (that warms my heart to no end).
I pray for patience (mostly when I've lost all of mine and we're both in separate corners in tears). I pray for answers that I don't really think will come. His heart and brain are both stable. Now we only deal with the unseen, non-life threatening things. And those, sometimes, are so much worse than the things that nearly killed him-- because when you're in the Valley of the Shadow of Death, you can feel God carrying you, and you can hold on to hope and just keep moving into the next second, praying your baby will live. And then, he does. And there's nothing like that feeling-- that elation, that thankfulness, that bliss-- that you put your very first baby into the hands of God and medicine and he came out better for it, and he gets to grow old. And he gets to have a future. And he gets to run and play and laugh, instead of feeling sick and sad and dizzy and being in pain all of the time.
It's the day in and day out that can really break you down and make you lose your faith. It's the days when you're pretty sure you're the worst mother on earth because you don't even LIKE your child and you just know he'd be better off in some alternate reality where he had a patient mama with the answers to his issues instead of the screwed up frazzled mess he's stuck with.
But if everything happens for a reason, and all things work together for the good of those who love God-- and I'm standing on those promises-- then Keagan's SUPPOSED to have me, in all of my mess and stress and imperfections. And I'm supposed to have him, in all the confusion that's in his mind sometimes, and with the misfires that happen sometimes. And we're supposed to make each other better, he and I. And someday, hopefully soon, we'll move past coping and into thriving. I know we're capable, it just takes time.
Thursday, January 3, 2013
Wednesday, August 10, 2011
the best news!
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."
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, 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.
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