Today's events were rough enough that I returned to blogging. I think it was really the compilation of this week's events just building up to the point that I reached my threshold of calm and collected, but whatever. I did not realize it had been so incredibly long that I have been away and my return is overdue. Had it not been my meltdown, I am sure something would have driven me to become reacquainted with my blog. Having said all of that...hello again!! Truth is, I have missed blogging and my absence has been a sad testament to my son's journey with Citrullinemia. He deserves for the world to know what he lives with each and every day. Some days are way easier than others, but each day presents some battle, big or small, from which he emerges victorious! Today...well let's just jump right in!
Caroline has been sick since Friday, missing school Monday, Tuesday and Wednesday so far. Coughing non-stop, fever, congestion, ear infection to boot! It has not been a great week for her, and while I hate for her to be miserable and sick, the truth is...I am relieved when it is her and not Coulby. I know how that must sound, but when Coulby gets sick it is a constant worry about whether he will make it through the entire illness at home or will end up bed ridden with an IV at Johns Hopkins. Of my two children, Coulby is usually the one who gets sick more often, and with him having just gotten over having croup, I was relieved that it was not him who was sick again. My relief was fleeting.
The school called me yesterday to tell me "Coulby is not quite acting himself" and to inform me that after drinking his medicated formula, he threw up. Nothing major, just some clear fluid. Oh, and his balance was off. AND he chose to lay in the nurse's office rather than rejoin his classmates in indoor recess. That's not my kid. He LOVES indoor recess. In fact, that is one of my tried and true bargaining tools in the mornings to get Coulby to eat breakfast and take his medication willingly. You see, indoor recess means he can bring a toy from home to play with at school. Yesterday he had painstakingly chosen a Hot Wheels car to bring to school and triple checked to make sure I had in fact remembered to put it in his backpack. So yeah...I knew he must really not be feeling well to pass up his chance to play with it. I picked Coulby up from school and let the worrying begin! His symptoms matched Caroline's, but the day and evening went fairly smoothly.
Today Coulby did not have an appetite. He would not drink anything other than water, which hydrates him but does not provide him with the calories his body so desperately needs when he is sick. He has been gagging on his formula (although I did not really think much of that because he does that when sick or well). It was this evening that threw me for a loop and pushed me over the edge. Having a sick child is stressful. Having two sick children is even more stressful. But having two sick children, one of which poses a constant worry when sick...now that is the epitome of stress! Take that existing stress after a long day, add Coulby vomiting, and my nerves were shot. It was out of nowhere. He's sitting on the couch one second, I bring him his formula, and the next second he is throwing up. It was like just seeing his formula made him sick. And he was shivering. Fully clothed, wrapped in blankets and teeth-chattering shivering! No fever. And still had to drink a full cup of medicated formula.
This is where I had my meltdown. I knew he still had to get his medication. He had just thrown up and yet I still had to be the bad guy and force him to drink! Who wants to drink something, especially something that tastes 1,000 times worse than biting down on a stink bug (not that I know from experience with a stink bug, but just imagining it makes me gag)? Poor Coulby. I hate Citrullinemia always, but especially on days like this! I hate that he can't just be sick and lay around in his pajamas and not worry about eating or drinking if he doesn't feel like doing either. I hate that I have to force drinks and medication and food on him when his belly can't handle it! It just plain sucks!!! And wouldn't you know that Coulby, after an hour or so and a lot of motivational talking from me plus a few chants of, "You can do this Coulby!" from himself, drank his formula like a champ...AND THREW UP! IT JUST.ISN'T.FAIR!!!!!!!! My poor sweet boy! He tried so hard to motivate himself to drink his formula, despite feeling sick to his stomach, because he knew he had to. And after all of that, he looked at me and said, "I'm sorry I threw up, mommy." I hugged him close and told him it was okay and that he had done a great job. I told him how much I love him and how sorry I am that he's not feeling well. And I held back my own tears of sadness for him and anger that he has to suffer every time he's not feeling well.
And I do feel angry. I cannot help it. I know things could be worse. I know Coulby is still home despite being sick and I should be thankful that he is not at Hopkins right now. But when I think of how hard he tries each and every day, and especially when he's sick, to take the medication he so detests...I get mad! I just don't know what to do. He is sick. He doesn't feel well. He needs his medication. But the medication makes him sick. If he throws up or if he doesn't get his medication, he might end up in the hospital. It is a vicious cycle in which I am helpless!
So please excuse my temporary meltdown. I guess I needed to vent a little to a world where most people don't quite understand what it's like to live with Citrullinemia, or any other metabolic disorder. Please keep Coulby in your thoughts and prayers. Pray that he will manage this illness from the comforts of home, away from inner city Baltimore and doctors and nurses and the painful invasion of an IV. Updates to come!
Showing posts with label metabolic disorder. Show all posts
Showing posts with label metabolic disorder. Show all posts
Thursday, January 17, 2013
Sunday, February 28, 2010
This topsy-turvy, unpredictable kind of life...
A year goes by and I begin to forget all of the implications of his disorder. A year TO.THE.DAY. February 26. I should always expect that slap back into reality. Because I know he is always one metabolic episode away from hyperammonemia (elevated levels of ammonia that can cause brain damage), hospitalization, coma and even death. Just the slightest inconsistency and Coulby can be thrown into a cyclonic downward metabolic spiral.
But it is so easy to slip into that comfort zone. That state of loosening up just a little because Coulby has been doing so well and staying so metabolically stable. The initial days following hospitalizations are always the most tense and those in which I am most hyper-sensitive to everything Coulby is doing, saying, eating...anything. When he gets back to baseline I feel myself relax just a little. And the more time that goes by without issue, the more I relax and the easier it is to suppress the horrors of his disorder. How could we have a normal family life if we were always lying in wait for the next illness? The next metabolic instability? The next hospitalization? So I allow myself to live just a little. For Coulby and for my own sanity. And then...BAM! Back to the hospital.
This time it came on suddenly. Coulby went to school on Thursday morning, had a good day, ate his lunch with no issues, did not complain of not feeling well. Came home and spent that evening running around with Caroline shrieking and playing. Nothing unusual. But he did not want to eat his chicken nuggets. First indicator that something might be wrong. He had been scarfing those things down, drenched in ranch dressing, for the last week or so. He actually started crying after the plate was put in front of him, almost as if it pained him to think of eating anything. Second indicator. We decided it was easier to just let Coulby drink milk that night to meet his protein needs. That is when he started holding his stomach. Third indicator. He said he had a little stomachache. Nothing came of it and he drank his milk and went to bed.
Coulby woke up crying not long after he had gone to bed. We found him sitting in his bed where he had been rudely awoken by the earlier stomachache and thrown up. Aside from crying, Coulby seemed to have recovered without issue, which is always a good thing with his disorder. He was alert and responsive. His eyes were clear and not glassy. I stripped the bed while my husband took Coulby into the bathroom to get him washed off. Coulby spent the night in the bed with my husband, who said he woke up whimpering and then throwing up about every hour. It is detrimental to Coulby's metabolic stability if he loses too much fluid and/or calories. He was vomiting so much that we were not able to replenish what he was losing, and by morning we were packing him up to take him to Hopkins for an inevitable admission.
I drove, well above the speed limit and in a daze, my instincts on overdrive, to get Coulby to the hospital. Getting through Baltimore city traffic is always tough, and then I practically had to drive to the top of the parking deck to get a parking spot. A very narrow parking spot at that. It was like trying to squeeze into a pair of jeans that are one size too small! Imagine trying to get my stuff out of the car PLUS Coulby, who at that point was in bad shape and needing to be carried. All 45+ pounds of him! It took some fancy maneuvering, let me tell you. And if it had not been such a crisis situation, I might have actually found it comical. But I made it through the hospital to the ER and got enough of a workout to last the next month.
Hopkins is notorious for dragging their feet when we bring Coulby to the ER. You would think that a child who requires immediate care with the risk of elevated ammonia and brain damage would have a specific, individual protocol. But they follow a standardized protocol and it usually takes too long to get Coulby into a room, to get an IV in him, get bloodwork and to get fluids and medicine running into the IV. This time I was surprised that they got him into a room so quickly, but the events following negated their speed in doing so. (Elaboration to come.)
I knew that Coulby was fading fast and that his ammonia must be elevated, I just did not know by how much. He was not responding to anything I said and his eyes took on a glassy look. He started getting lethargic. Despite this, if any of the hospital staff touched him or he heard any of the familiar noises only a hospital can boast, he became very agitated. Aggressive in a way that I had never, ever witnessed him before. He was kicking, flailing, scratching, pinching and biting. He drew blood scratching the nurse (a small victory for him for all of the times he had been pinned down and poked and prodded by nurses), and I restrained him with my arms and legs and tried soothing him by talking to him. He bit down on my arm with the full force of his jaw. If I had not been able to pull my arm away, he would have broken skin. It was startling to have him bite me. So upsetting because I knew it was not like Coulby at all and because when I talked to him, he looked right at me with no recognition in his eyes. Do you know how heartbreaking it is to have your own child look at you and not know who you are? It is devastating. Frightening beyond all comprehension. One of the worst things I have ever experienced in my life, and something I hope to never have to experience again. Something I will never forget no matter how much time passes or how hard I try. I felt the tears welling up in my eyes and could not help crying about it. But only for a moment. A brief moment. Because I could not focus on my emotions right then. They were secondary to getting Coulby the care he so desperately needed.
The series of events in the ER had a snowball effect. The ER does not stock the correct formula of fluids that Coulby needs to flush out the toxins, hydrate him and replenish calories. So they had to start by using what they had. His ammonia came back at 317!! 317! Normal is 0-32, for those of you who are not familiar. Ammonia is toxic. 317 is startling. Scary. Threatening. It is crucial to get ammunol running into the IV to bring that number down into normal range. The doc wrote a script for the ammunol, but made the biggest error in judgment by listening to the pharmacy and changing the script as they told her it needed to be filled. We have learned the hard way to NEVER trust the pharmacy. Check. Double check. TRIPLE check everything! Guess each doctor has to learn this in his own time as well. But Coulby always suffers at the expense of these errors.
So the ammunol was FINALLY delivered and started hours after arriving in the ER, but was stopped only after 15 minutes of being administered. Coulby was still sound asleep and I knew he had to have that ammunol. The doctor explained to me that the ammunol administered was too concentrated and that it should have been filled in a 1L container to administer the proper ratio. Human error. Inexcusable. We are dealing with Coulby's brain! So the wait was on for the new 1L container of ammunol. Each minute seemed like an hour. And then it arrived! That glass bottle of liquid gold! The nurse brought it into the room and prepared to hang it and then it happened. The icing on the cake. I watched in horror as she lost her grip on the GLASS bottle with Coulby's lifeline. It fell out of her hands in slow motion and shattered on the floor into a million pieces. If I could have screamed I would have. I looked at the floor with the ammunol my baby so needed to be running into his veins and just stared. The smell hit me. Everyone calls it "stinky meds." It is said to smell like rotten egg with a bitter sweet scent mixed in. I am immune. I smell it on Coulby every day. When he sweats. When he has sipped from my cup. On his clothes. It is his scent. I kind of like it, actually.
My eyes welled up again. Not so much because I was sad, but because after everything that had happened that day, this was the last thing I could handle. I wanted to cry in frustration. Then I felt the anger boiling up inside of me. I said nothing. I sat there in utter shock and kept my mouth shut. Until the doctor strolled into the room. Coulby's dietitian, always in his corner, just happened to come in then as well. And I laid it out. I went off. I let all of the anger and frustration and fear and hurt come out. Goodbye to nice me. It takes a lot to make me mean. To get me mad enough to release it all. But it was too much. Too much had gone wrong. Too much time had passed between our arrival and the medicine being started. Too many people were more than willing to gamble with my son's mental capacity. And someone had to take responsibility for it all. The doctor stared at me, speechless. When I felt a little better, I left Coulby guarded by his dietitian, one of the only people at Hopkins that I would ever trust with my son. I took some deep breaths, called my hubby, who always fights beside me, and vented.
We spent the whole day in the ER. Coulby slept the entire day away. He would occasionally wake, whimpering if anyone touched him, but I use the term "wake" very loosely. His eyes did not open. He did not respond to my voice. He just whimpered. It was scary. Seeing him lying there, hooked up to the IV and looking so small in the hospital bed, completely out of it. I had not heard Coulby's voice since 8:30 Friday morning. I had not seen his eyes open with recognition since we had arrived at Hopkins.
It was literally 8:30 p.m. before Coulby was transferred to the PCRU (the floor on which he has always been treated during hyperammonemic episodes). Nothing really woke him or caused him to stir. I watched him a lot that night. I missed hearing his voice. I missed the noise of my rough and tumble little boy. I missed seeing the life in his eyes. And then, some time in the wee hours of the morning, Coulby stirred and sat up. His eyes were still mostly closed, but he was aware of his surroundings, although confused by them. He responded to my voice! And when he finally opened his eyes, he recognized me! And the first thing he said to me in almost 12 hours was, "I need to go potty!"
Coulby's recovery started at that point. He started talking a little more and asking questions. A whole day of his life was completely wiped out of his memory. I wish I could erase some of the horrors of the ER from my mind. They will haunt me forever, perhaps faded, but never erased.
Mentioning any of the other disappointments or discrepancies of Coulby's hospital stay and care would really serve no purpose other than to convey my lack of trust in the inner workings of the medical world. Most important is that he recovered from an ammonia of 317 with all Coulbyisms intact; a spirit unbroken by all that most deem unfair for a child to have to experience. Final ammonia prior to discharge, after spending just shy of 4 full days in the hospital, was 33!!
So we settle back in to our life at home, walking on ice for the first several days to make sure Coulby improves his protein and caloric intake each day. The thought is always in the back of our minds: what if he ends up right back at Hopkins? It is stressful, but not as much so as being in the confines of the hospital. When the dust settles and each day seems more and more normal, it is inevitable that I will slip into the comforts of our daily routine. I will let myself relax and live just a little. If I can remind myself to keep the memories of this hospitalization fresh, maybe, just maybe, it will not be such a slap when Coulby has another metabolic episode. Hopefully it will be another good year (although I hope even longer) before I feel that sting on my face.
But it is so easy to slip into that comfort zone. That state of loosening up just a little because Coulby has been doing so well and staying so metabolically stable. The initial days following hospitalizations are always the most tense and those in which I am most hyper-sensitive to everything Coulby is doing, saying, eating...anything. When he gets back to baseline I feel myself relax just a little. And the more time that goes by without issue, the more I relax and the easier it is to suppress the horrors of his disorder. How could we have a normal family life if we were always lying in wait for the next illness? The next metabolic instability? The next hospitalization? So I allow myself to live just a little. For Coulby and for my own sanity. And then...BAM! Back to the hospital.
This time it came on suddenly. Coulby went to school on Thursday morning, had a good day, ate his lunch with no issues, did not complain of not feeling well. Came home and spent that evening running around with Caroline shrieking and playing. Nothing unusual. But he did not want to eat his chicken nuggets. First indicator that something might be wrong. He had been scarfing those things down, drenched in ranch dressing, for the last week or so. He actually started crying after the plate was put in front of him, almost as if it pained him to think of eating anything. Second indicator. We decided it was easier to just let Coulby drink milk that night to meet his protein needs. That is when he started holding his stomach. Third indicator. He said he had a little stomachache. Nothing came of it and he drank his milk and went to bed.
Coulby woke up crying not long after he had gone to bed. We found him sitting in his bed where he had been rudely awoken by the earlier stomachache and thrown up. Aside from crying, Coulby seemed to have recovered without issue, which is always a good thing with his disorder. He was alert and responsive. His eyes were clear and not glassy. I stripped the bed while my husband took Coulby into the bathroom to get him washed off. Coulby spent the night in the bed with my husband, who said he woke up whimpering and then throwing up about every hour. It is detrimental to Coulby's metabolic stability if he loses too much fluid and/or calories. He was vomiting so much that we were not able to replenish what he was losing, and by morning we were packing him up to take him to Hopkins for an inevitable admission.
I drove, well above the speed limit and in a daze, my instincts on overdrive, to get Coulby to the hospital. Getting through Baltimore city traffic is always tough, and then I practically had to drive to the top of the parking deck to get a parking spot. A very narrow parking spot at that. It was like trying to squeeze into a pair of jeans that are one size too small! Imagine trying to get my stuff out of the car PLUS Coulby, who at that point was in bad shape and needing to be carried. All 45+ pounds of him! It took some fancy maneuvering, let me tell you. And if it had not been such a crisis situation, I might have actually found it comical. But I made it through the hospital to the ER and got enough of a workout to last the next month.
Hopkins is notorious for dragging their feet when we bring Coulby to the ER. You would think that a child who requires immediate care with the risk of elevated ammonia and brain damage would have a specific, individual protocol. But they follow a standardized protocol and it usually takes too long to get Coulby into a room, to get an IV in him, get bloodwork and to get fluids and medicine running into the IV. This time I was surprised that they got him into a room so quickly, but the events following negated their speed in doing so. (Elaboration to come.)
I knew that Coulby was fading fast and that his ammonia must be elevated, I just did not know by how much. He was not responding to anything I said and his eyes took on a glassy look. He started getting lethargic. Despite this, if any of the hospital staff touched him or he heard any of the familiar noises only a hospital can boast, he became very agitated. Aggressive in a way that I had never, ever witnessed him before. He was kicking, flailing, scratching, pinching and biting. He drew blood scratching the nurse (a small victory for him for all of the times he had been pinned down and poked and prodded by nurses), and I restrained him with my arms and legs and tried soothing him by talking to him. He bit down on my arm with the full force of his jaw. If I had not been able to pull my arm away, he would have broken skin. It was startling to have him bite me. So upsetting because I knew it was not like Coulby at all and because when I talked to him, he looked right at me with no recognition in his eyes. Do you know how heartbreaking it is to have your own child look at you and not know who you are? It is devastating. Frightening beyond all comprehension. One of the worst things I have ever experienced in my life, and something I hope to never have to experience again. Something I will never forget no matter how much time passes or how hard I try. I felt the tears welling up in my eyes and could not help crying about it. But only for a moment. A brief moment. Because I could not focus on my emotions right then. They were secondary to getting Coulby the care he so desperately needed.
The series of events in the ER had a snowball effect. The ER does not stock the correct formula of fluids that Coulby needs to flush out the toxins, hydrate him and replenish calories. So they had to start by using what they had. His ammonia came back at 317!! 317! Normal is 0-32, for those of you who are not familiar. Ammonia is toxic. 317 is startling. Scary. Threatening. It is crucial to get ammunol running into the IV to bring that number down into normal range. The doc wrote a script for the ammunol, but made the biggest error in judgment by listening to the pharmacy and changing the script as they told her it needed to be filled. We have learned the hard way to NEVER trust the pharmacy. Check. Double check. TRIPLE check everything! Guess each doctor has to learn this in his own time as well. But Coulby always suffers at the expense of these errors.
So the ammunol was FINALLY delivered and started hours after arriving in the ER, but was stopped only after 15 minutes of being administered. Coulby was still sound asleep and I knew he had to have that ammunol. The doctor explained to me that the ammunol administered was too concentrated and that it should have been filled in a 1L container to administer the proper ratio. Human error. Inexcusable. We are dealing with Coulby's brain! So the wait was on for the new 1L container of ammunol. Each minute seemed like an hour. And then it arrived! That glass bottle of liquid gold! The nurse brought it into the room and prepared to hang it and then it happened. The icing on the cake. I watched in horror as she lost her grip on the GLASS bottle with Coulby's lifeline. It fell out of her hands in slow motion and shattered on the floor into a million pieces. If I could have screamed I would have. I looked at the floor with the ammunol my baby so needed to be running into his veins and just stared. The smell hit me. Everyone calls it "stinky meds." It is said to smell like rotten egg with a bitter sweet scent mixed in. I am immune. I smell it on Coulby every day. When he sweats. When he has sipped from my cup. On his clothes. It is his scent. I kind of like it, actually.
My eyes welled up again. Not so much because I was sad, but because after everything that had happened that day, this was the last thing I could handle. I wanted to cry in frustration. Then I felt the anger boiling up inside of me. I said nothing. I sat there in utter shock and kept my mouth shut. Until the doctor strolled into the room. Coulby's dietitian, always in his corner, just happened to come in then as well. And I laid it out. I went off. I let all of the anger and frustration and fear and hurt come out. Goodbye to nice me. It takes a lot to make me mean. To get me mad enough to release it all. But it was too much. Too much had gone wrong. Too much time had passed between our arrival and the medicine being started. Too many people were more than willing to gamble with my son's mental capacity. And someone had to take responsibility for it all. The doctor stared at me, speechless. When I felt a little better, I left Coulby guarded by his dietitian, one of the only people at Hopkins that I would ever trust with my son. I took some deep breaths, called my hubby, who always fights beside me, and vented.
We spent the whole day in the ER. Coulby slept the entire day away. He would occasionally wake, whimpering if anyone touched him, but I use the term "wake" very loosely. His eyes did not open. He did not respond to my voice. He just whimpered. It was scary. Seeing him lying there, hooked up to the IV and looking so small in the hospital bed, completely out of it. I had not heard Coulby's voice since 8:30 Friday morning. I had not seen his eyes open with recognition since we had arrived at Hopkins.
It was literally 8:30 p.m. before Coulby was transferred to the PCRU (the floor on which he has always been treated during hyperammonemic episodes). Nothing really woke him or caused him to stir. I watched him a lot that night. I missed hearing his voice. I missed the noise of my rough and tumble little boy. I missed seeing the life in his eyes. And then, some time in the wee hours of the morning, Coulby stirred and sat up. His eyes were still mostly closed, but he was aware of his surroundings, although confused by them. He responded to my voice! And when he finally opened his eyes, he recognized me! And the first thing he said to me in almost 12 hours was, "I need to go potty!"
Coulby's recovery started at that point. He started talking a little more and asking questions. A whole day of his life was completely wiped out of his memory. I wish I could erase some of the horrors of the ER from my mind. They will haunt me forever, perhaps faded, but never erased.
Mentioning any of the other disappointments or discrepancies of Coulby's hospital stay and care would really serve no purpose other than to convey my lack of trust in the inner workings of the medical world. Most important is that he recovered from an ammonia of 317 with all Coulbyisms intact; a spirit unbroken by all that most deem unfair for a child to have to experience. Final ammonia prior to discharge, after spending just shy of 4 full days in the hospital, was 33!!
So we settle back in to our life at home, walking on ice for the first several days to make sure Coulby improves his protein and caloric intake each day. The thought is always in the back of our minds: what if he ends up right back at Hopkins? It is stressful, but not as much so as being in the confines of the hospital. When the dust settles and each day seems more and more normal, it is inevitable that I will slip into the comforts of our daily routine. I will let myself relax and live just a little. If I can remind myself to keep the memories of this hospitalization fresh, maybe, just maybe, it will not be such a slap when Coulby has another metabolic episode. Hopefully it will be another good year (although I hope even longer) before I feel that sting on my face.
Saturday, March 21, 2009
For all the stay-at-home mommies out there...
I stay home with my kids. Because I think it is the best thing that I can do for them. And because I did not want to miss a thing as they grew up and started crawling, walking, talking. Making the decision to be a stay-at-home mom was difficult, because it meant giving up that life outside of the home and a second income. But it is the best decision I have ever made. Not because it is an easy job--in fact, it is the hardest job in the world. Well, in my humble opinion. So I find it comical that people think it must be wonderful to be home all the time. You know, with all that "down time" that I have to do what I want around the house. This is a tribute to all of you stay-at-home moms who know exactly what I am talking about...
I was due April 22, 2004 with Coulby. I was huge by the end of my pregnancy with him...turns out he was a big boy, especially for my 5'4" frame. So I looked huge and felt extremely uncomfortable and was ready to have the baby and move on. Not that I did not love being pregnant, because I actually did, but by the end I had, had it. Plus I had started dilating and was 100% effaced by mid-March, so I thought Coulby was going to make his grand entrance much sooner than my due date. He did not. He was born April 25, 2004. And that is when everything as I knew it changed. Drastically. Not just bringing-a-new-baby-home change, but bringing a new baby WITH a metabolic disorder into our lives. and it was then that I knew I had made the right choice to stay at home with Coulby. I would never have trusted anyone to meet the very specific needs that Coulby has. I would have been a nervous wreck. I was anyway! So this started my journey into stay-at-home motherhood.
That first year threatened to break me--my spirit, my sanity, my sense of self, my patience...you name it! Metabolic disorder aside, I went from being an active working woman with a second part-time job while working on my Master's degree, to being a mom. At home. Alone with an infant. Very little socialization. Very little time for me. Very little sleep. Often times it was too much of a hassle to try to go out anywhere. You know, packing up the bottle bag, the diaper bag, loading the baby into the car seat, and carrying all of these things to the car at the same time! (On a good note, this taught me how to carry all of my groceries into the house in ONE trip!) Coulby was a pretty good baby, but he had his moments! And those were the days that my husband would come home from work and would not even have made it to the door before I was handing him a crying baby, as I was crying. Oh, and when I really needed Coulby to nap, so I could get something done or take a nap myself, those were the days when he would hit the crib and scream in protest. I would pick him up again, calm him, go to lay him back in the crib, and the screaming would start again. And so it went: pick up, calm, lay down, screaming baby, repeat. On top of everything else, Coulby did have several hospitalizations in his first year, and we were always worried about him and keeping him healthy. I swore I would not make it through that first year. But I did. And by February 2006, I must have forgotten about all of the stuff with Coulby, because I was pregnant again!
Isn't it funny how we have a baby and then all of that infancy stuff disappears from our minds (sleep deprivation and all of its effects, early mornings, late nights, spit up, the bewitching hours, teething, diapers, drool...) so we can have another baby? I think if people really remembered all of the difficult things about having a baby, they would not go on to have any more children. I think it is the good things, like all of the firsts, and the toothless smiles, and the happy baby giggles, that we remember the most. Because the good things far outweigh the difficult. They make it worth it.
Caroline was due on November 1, 2006, and arrived October 29, 2006. I was amazed at how easy it was to bring her home. We got to experience all of the new baby stuff that we missed out on having Coulby and all of his medical issues. Plus Caroline was like a little dream baby. Quiet, content, just easy. And I had settled in to being a stay-at-home mom, too. I think that made the biggest difference in bringing her home. Coulby had to suffer all of my insecurities of being a new parent, as well as my adjustment to being home.
And now, I absolutely love being a stay-at-home mom. It is the hardest job in the world. Every day is new and unscripted. The day revolves around the kids and their moods and their needs, and some are not always fun. Nap times still do not always go smoothly, and I suck it up and say, "oh well," to any quiet time to myself. I spend much of my days chasing after Coulby to get him to drink formula, or rescuing the cat from the attacking children, or cleaning up Caroline's pencil wall art. There are toys everywhere, cleverly hidden in baskets that get dumped upside down, spilling all of the contents out. I pick up those toys about five times a day...at least. I change poopy diapers (and sometimes they are the ones that make my eyes water), remind Coulby to use the potty before we leave the house (and he STILL has to go right when we get in the car or to a store!), try to squeeze time in to do mountainous piles of laundry, and put the "time-out" chair into use when my little boy pushes the limits (making me long for the days when all he could do was scream). I think in mommy terms now, and have accepted the "mommy brain" as part of the territory. I always say that I will be smart again...some day. I do not get out much and I have not had a "date" with my husband in forever, and i often wonder if I will know myself anymore by the time the kids are both in school all day every day.
But I also laugh. I laugh at my kids and the funny things they come up with. I laugh when Coulby makes up his own songs, or Caroline starts dancing to those songs. And even when she breaks open eggs on our counter or pours salt all over the table or pepper on my bagel and in my coffee. What else can you do but laugh? These kids are funny. They are not wallflowers that say "Yes, ma'am," or sit with their hands folded in their laps, never breaking a rule. They live!
My husband has the glamorous job (or so many people think), so a lot of time when asked what both of us do, I feel the limelight bypass me. And that is okay. Because I know what I do as a mom, and I know how difficult and wonderful and frustrating and fun it can be! Moms make the world go 'round, especially those brave enough to be stay-at-home moms. I applaud you all!!
I was due April 22, 2004 with Coulby. I was huge by the end of my pregnancy with him...turns out he was a big boy, especially for my 5'4" frame. So I looked huge and felt extremely uncomfortable and was ready to have the baby and move on. Not that I did not love being pregnant, because I actually did, but by the end I had, had it. Plus I had started dilating and was 100% effaced by mid-March, so I thought Coulby was going to make his grand entrance much sooner than my due date. He did not. He was born April 25, 2004. And that is when everything as I knew it changed. Drastically. Not just bringing-a-new-baby-home change, but bringing a new baby WITH a metabolic disorder into our lives. and it was then that I knew I had made the right choice to stay at home with Coulby. I would never have trusted anyone to meet the very specific needs that Coulby has. I would have been a nervous wreck. I was anyway! So this started my journey into stay-at-home motherhood.
That first year threatened to break me--my spirit, my sanity, my sense of self, my patience...you name it! Metabolic disorder aside, I went from being an active working woman with a second part-time job while working on my Master's degree, to being a mom. At home. Alone with an infant. Very little socialization. Very little time for me. Very little sleep. Often times it was too much of a hassle to try to go out anywhere. You know, packing up the bottle bag, the diaper bag, loading the baby into the car seat, and carrying all of these things to the car at the same time! (On a good note, this taught me how to carry all of my groceries into the house in ONE trip!) Coulby was a pretty good baby, but he had his moments! And those were the days that my husband would come home from work and would not even have made it to the door before I was handing him a crying baby, as I was crying. Oh, and when I really needed Coulby to nap, so I could get something done or take a nap myself, those were the days when he would hit the crib and scream in protest. I would pick him up again, calm him, go to lay him back in the crib, and the screaming would start again. And so it went: pick up, calm, lay down, screaming baby, repeat. On top of everything else, Coulby did have several hospitalizations in his first year, and we were always worried about him and keeping him healthy. I swore I would not make it through that first year. But I did. And by February 2006, I must have forgotten about all of the stuff with Coulby, because I was pregnant again!
Isn't it funny how we have a baby and then all of that infancy stuff disappears from our minds (sleep deprivation and all of its effects, early mornings, late nights, spit up, the bewitching hours, teething, diapers, drool...) so we can have another baby? I think if people really remembered all of the difficult things about having a baby, they would not go on to have any more children. I think it is the good things, like all of the firsts, and the toothless smiles, and the happy baby giggles, that we remember the most. Because the good things far outweigh the difficult. They make it worth it.
Caroline was due on November 1, 2006, and arrived October 29, 2006. I was amazed at how easy it was to bring her home. We got to experience all of the new baby stuff that we missed out on having Coulby and all of his medical issues. Plus Caroline was like a little dream baby. Quiet, content, just easy. And I had settled in to being a stay-at-home mom, too. I think that made the biggest difference in bringing her home. Coulby had to suffer all of my insecurities of being a new parent, as well as my adjustment to being home.
And now, I absolutely love being a stay-at-home mom. It is the hardest job in the world. Every day is new and unscripted. The day revolves around the kids and their moods and their needs, and some are not always fun. Nap times still do not always go smoothly, and I suck it up and say, "oh well," to any quiet time to myself. I spend much of my days chasing after Coulby to get him to drink formula, or rescuing the cat from the attacking children, or cleaning up Caroline's pencil wall art. There are toys everywhere, cleverly hidden in baskets that get dumped upside down, spilling all of the contents out. I pick up those toys about five times a day...at least. I change poopy diapers (and sometimes they are the ones that make my eyes water), remind Coulby to use the potty before we leave the house (and he STILL has to go right when we get in the car or to a store!), try to squeeze time in to do mountainous piles of laundry, and put the "time-out" chair into use when my little boy pushes the limits (making me long for the days when all he could do was scream). I think in mommy terms now, and have accepted the "mommy brain" as part of the territory. I always say that I will be smart again...some day. I do not get out much and I have not had a "date" with my husband in forever, and i often wonder if I will know myself anymore by the time the kids are both in school all day every day.
But I also laugh. I laugh at my kids and the funny things they come up with. I laugh when Coulby makes up his own songs, or Caroline starts dancing to those songs. And even when she breaks open eggs on our counter or pours salt all over the table or pepper on my bagel and in my coffee. What else can you do but laugh? These kids are funny. They are not wallflowers that say "Yes, ma'am," or sit with their hands folded in their laps, never breaking a rule. They live!
My husband has the glamorous job (or so many people think), so a lot of time when asked what both of us do, I feel the limelight bypass me. And that is okay. Because I know what I do as a mom, and I know how difficult and wonderful and frustrating and fun it can be! Moms make the world go 'round, especially those brave enough to be stay-at-home moms. I applaud you all!!
Friday, January 23, 2009
Balancing Act
So I have never been one to blog, but I finally felt like blogging might be the answer to educating people about Urea Cycle Disorders. Why would I want to do this? Because I live a Citrulllinemia life. Well, not me specifically, but as the parent of a 4.5 year old with a chronic metabolic disorder, I live the life of caretaker, with one object: to maintain the balance.
My story starts without too much excitement...well, maybe it is kind of exciting, considering I started my marriage with the excitement of the coming new year just over 6 years ago. Yup, I was crazy enough to want to get married on 12/31. And you know what? It was a BLAST!! People still talk about it. The party of a lifetime! I digress...I married my high school sweetheart just over 6 years ago. We have had a happy marriage, balancing the normal upkeep of a healthy marriage, a crazy work schedule (his!), and eventually, the priceless chaos that two adorable children add to our lives. It has always seemed that life has been perfect for us. Everything has fallen in to place easily. We have not had to struggle for much. Our marriage is happy. We have a boy and a girl-the best of both worlds. P-E-R-F-E-C-T. But how boring would life be if it was perfect? Right?
I became pregnant easily when we had been married for about 7 months. We did not waste time! I had the epitome of the perfect (there is that word again!) pregnancy. Our son decided not to make his entrance into this world until he was good and ready, which just happened to be on his daddy's birthday! 1 in 365 chance...what are the odds of that? I guess it happens, but we just thought that was the coolest thing. What a birthday present! I have never outdone it, as you can imagine. Coulby Patrick was a big boy, weighing in at 8 lbs. 1.5 oz. He was healthy and beautiful and his daddy's pride and joy from the moment he was born.
We settled in to our new life as a family of 3, and went through the usual uncertainties of being new parents. Despite our inexperience, at 4 days old, Coulby seemed to be doing just fine, doing all of the things newborns do. Crying, sleeping, eating, pooping...the norm. Nothing unusual. So when we received a phone call from the pediatrician's office alerting us that Coulby's newborn screen had yielded some alarming results, we were both in shock. We were told to take him to Johns Hopkins ER immediately. "They" would be waiting for us. We asked questions, and the only thing the pediatrician seemed to be able to tell us was that the situation could be life threatening. No directions to the hospital. No explanations as to what these numbers might mean. Nothing.
That began our Citrullinemia story. We somehow made it to Hopkins, although for the life of me I could not tell you how. I barely remember riding there. I was numb. We arrived, and sure enough, "they" were waiting for us. "They" turned out to be genetic doctors, as well as a slew of nurses and other assorted people. Coulby had to have blood work done, and an IV put in his tiny arm, his 4-day-old arm, which apparently had teeny tiny veins, because he was poked about 10 or so times before they finally got the IV in successfully. He screamed. We cried. It was the most helpless feeling I have ever felt in my entire life. That night someone found us a room in the hospital so we could get some sleep. Actually, it was more like a utility closet with 2 twin beds squeezed from wall to wall. My husband and I could not even sleep in the same bed that night, to comfort each other and ease each other's fears. We held hands between the beds and prayed. Hard.
When we woke up the next morning and realized the entire night before had not been a dream, we went to be with our baby and find out what was going on. It was confirmed that Coulby's initial newborn screen had yielded accurate results, which meant a diagnosis of a rare metabolic disorder, more specifically, a urea cycle disorder, called Citrullinemia. Huh? That is what we thought, too. It was scary and foreign to us. We sat down at a large conference-type table surrounded by genetic doctors, our two sets of parents, and other people I do not recall. We were educated on what Citrullinemia is, what it meant for our son, and what it would mean for us.
Citrullinemia is a urea cycle disorder in which the body is unable to break down excess protein. This can lead to a toxic build up of ammonia in the body, also known as hyperammonemia. At such toxic levels, hyperammonemia can lead to neurological damage, coma, and even death. It requires immediate treatment of IV fluids and medications. In order to balance protein intake, Coulby was going to need a high calorie, low protein diet, in which all food and drink consumed would need to be weighed on a scale and logged each day. Protein and calorie requirements would be based on growth and blood tests. Coulby would require routine check-ups at Hopkins. In addition to all of this, he would also need two medications daily: Argenine and Sodium Phenylbuterate (Buphenyl). These would be mixed into a powdered formula and consumed that way. And it does not stop there. Because the body naturally draws from protein stores in the bones when fighting illness, Coulby could get an excess amount of protein if he were to become ill. The excess protein would cause, you guessed it, hyperammonemia. You must realize that hyperammonemia is extremely serious, and is time-sensitive in terms of getting treatment. It might only be a matter of hours before brain damage occurs.
This was scary stuff! No one could predict how well Coulby would respond to IV therapy, if he already had brain damage, and how much of his life he would be spending in the hospital. We were told to be "cautiously optimistic." Not too promising, so it seemed.
4.5 years later Coulby is a happy, healthy little boy who is full of life and full of spirit! He was later diagnosed as having partial Citrullinemia, because he in fact has some enzyme function. We have hit rough spots along the way, but he is doing far better than anyone anticipated, and than we could have dreamed he would that first night at Hopkins. Coulby has spent nights in the hospital with dangerously high ammonias, has battled illnesses, some of which landed him in the hospital, has maintained the balance of his metabolic needs despite being a picky eater from the start, and endured many, MANY blood draws and IVs. And he is still smiling. Still thriving. Still charming everyone he meets. Still growing and learning and living the life we hoped he would. He started pre-school at the start of the school year, which was a big step for us, being germophobic and all.
And this is our life. Anticipating hospitalizations, but not living for them. Fearing germs and illness, but not hiding from them. Living the ups and downs of Citrullinemia, but learning and growing from each one. We see the blessings in this life we have been given; this awesome boy we call our son. He teaches me something new every day.
*Keep following my story and learn more about Citrullinemia and our family. Check out the link under A Citrullinemia Life to learn more about Urea Cycle Disorders and what you can do to help!
My story starts without too much excitement...well, maybe it is kind of exciting, considering I started my marriage with the excitement of the coming new year just over 6 years ago. Yup, I was crazy enough to want to get married on 12/31. And you know what? It was a BLAST!! People still talk about it. The party of a lifetime! I digress...I married my high school sweetheart just over 6 years ago. We have had a happy marriage, balancing the normal upkeep of a healthy marriage, a crazy work schedule (his!), and eventually, the priceless chaos that two adorable children add to our lives. It has always seemed that life has been perfect for us. Everything has fallen in to place easily. We have not had to struggle for much. Our marriage is happy. We have a boy and a girl-the best of both worlds. P-E-R-F-E-C-T. But how boring would life be if it was perfect? Right?
I became pregnant easily when we had been married for about 7 months. We did not waste time! I had the epitome of the perfect (there is that word again!) pregnancy. Our son decided not to make his entrance into this world until he was good and ready, which just happened to be on his daddy's birthday! 1 in 365 chance...what are the odds of that? I guess it happens, but we just thought that was the coolest thing. What a birthday present! I have never outdone it, as you can imagine. Coulby Patrick was a big boy, weighing in at 8 lbs. 1.5 oz. He was healthy and beautiful and his daddy's pride and joy from the moment he was born.
We settled in to our new life as a family of 3, and went through the usual uncertainties of being new parents. Despite our inexperience, at 4 days old, Coulby seemed to be doing just fine, doing all of the things newborns do. Crying, sleeping, eating, pooping...the norm. Nothing unusual. So when we received a phone call from the pediatrician's office alerting us that Coulby's newborn screen had yielded some alarming results, we were both in shock. We were told to take him to Johns Hopkins ER immediately. "They" would be waiting for us. We asked questions, and the only thing the pediatrician seemed to be able to tell us was that the situation could be life threatening. No directions to the hospital. No explanations as to what these numbers might mean. Nothing.
That began our Citrullinemia story. We somehow made it to Hopkins, although for the life of me I could not tell you how. I barely remember riding there. I was numb. We arrived, and sure enough, "they" were waiting for us. "They" turned out to be genetic doctors, as well as a slew of nurses and other assorted people. Coulby had to have blood work done, and an IV put in his tiny arm, his 4-day-old arm, which apparently had teeny tiny veins, because he was poked about 10 or so times before they finally got the IV in successfully. He screamed. We cried. It was the most helpless feeling I have ever felt in my entire life. That night someone found us a room in the hospital so we could get some sleep. Actually, it was more like a utility closet with 2 twin beds squeezed from wall to wall. My husband and I could not even sleep in the same bed that night, to comfort each other and ease each other's fears. We held hands between the beds and prayed. Hard.
When we woke up the next morning and realized the entire night before had not been a dream, we went to be with our baby and find out what was going on. It was confirmed that Coulby's initial newborn screen had yielded accurate results, which meant a diagnosis of a rare metabolic disorder, more specifically, a urea cycle disorder, called Citrullinemia. Huh? That is what we thought, too. It was scary and foreign to us. We sat down at a large conference-type table surrounded by genetic doctors, our two sets of parents, and other people I do not recall. We were educated on what Citrullinemia is, what it meant for our son, and what it would mean for us.
Citrullinemia is a urea cycle disorder in which the body is unable to break down excess protein. This can lead to a toxic build up of ammonia in the body, also known as hyperammonemia. At such toxic levels, hyperammonemia can lead to neurological damage, coma, and even death. It requires immediate treatment of IV fluids and medications. In order to balance protein intake, Coulby was going to need a high calorie, low protein diet, in which all food and drink consumed would need to be weighed on a scale and logged each day. Protein and calorie requirements would be based on growth and blood tests. Coulby would require routine check-ups at Hopkins. In addition to all of this, he would also need two medications daily: Argenine and Sodium Phenylbuterate (Buphenyl). These would be mixed into a powdered formula and consumed that way. And it does not stop there. Because the body naturally draws from protein stores in the bones when fighting illness, Coulby could get an excess amount of protein if he were to become ill. The excess protein would cause, you guessed it, hyperammonemia. You must realize that hyperammonemia is extremely serious, and is time-sensitive in terms of getting treatment. It might only be a matter of hours before brain damage occurs.
This was scary stuff! No one could predict how well Coulby would respond to IV therapy, if he already had brain damage, and how much of his life he would be spending in the hospital. We were told to be "cautiously optimistic." Not too promising, so it seemed.
4.5 years later Coulby is a happy, healthy little boy who is full of life and full of spirit! He was later diagnosed as having partial Citrullinemia, because he in fact has some enzyme function. We have hit rough spots along the way, but he is doing far better than anyone anticipated, and than we could have dreamed he would that first night at Hopkins. Coulby has spent nights in the hospital with dangerously high ammonias, has battled illnesses, some of which landed him in the hospital, has maintained the balance of his metabolic needs despite being a picky eater from the start, and endured many, MANY blood draws and IVs. And he is still smiling. Still thriving. Still charming everyone he meets. Still growing and learning and living the life we hoped he would. He started pre-school at the start of the school year, which was a big step for us, being germophobic and all.
And this is our life. Anticipating hospitalizations, but not living for them. Fearing germs and illness, but not hiding from them. Living the ups and downs of Citrullinemia, but learning and growing from each one. We see the blessings in this life we have been given; this awesome boy we call our son. He teaches me something new every day.
*Keep following my story and learn more about Citrullinemia and our family. Check out the link under A Citrullinemia Life to learn more about Urea Cycle Disorders and what you can do to help!
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