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
Wednesday, May 11, 2011
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.
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