Monday, September 13, 2010
Coulby started first grade at the end of August and I am lamenting his infancy. The adjustment to knowing my oldest is now a first grader has been way more difficult for me than sending him off to either preschool or Kindergarten. Why? Well, look at him! He is a little man! I swear he grows right before my eyes!
I guess I just never thought this day would sneak up on me so quickly. There were times when Coulby was a baby that I was not even sure I would send him to public school. The thought of exposing him to so many illnesses terrified me. My plan was to protect Coulby's health and keep my sanity intact by secluding him from any and all threats. I would have done him such a huge injustice in doing so. He loves school. It suits him.
Now I repeat the advice given to me because my baby is growing up way too quickly for my liking. And every time I pass it along I want to roll my eyes because I know how it sounds; that it is meaningless to the sleep-deprived, frazzled mother with a baby on her hip. But I say them anyway because eventually, for all of the mama's out there, these words ring true.
Friday, August 20, 2010
And today could be your last. Life can be over in a flash. In so many different ways. I have vacationed in the Outer Banks of North Carolina every summer for the last 18 years, with my parents as a child, and now with my own children. Every summer I know going into the ocean that there are great risks in doing so. Sharks (*shudder*), rip currents, rogue waves. And I do take those risks seriously. I do respect the ocean. But I, like so many, believe that nothing will happen to me. Because I am careful. I am aware of the risks. That makes me invincible, right? I think that is human nature to conjure those thoughts.
I believe that the couple I watched die on the beach today probably believed the same things. Yes, I said I watched a couple die in front of me today. And I am forever changed for it. I did not know them. But they were loved by someone. They were parents. A sister. A brother. Friends to someone. To many, probably. And they went into the ocean to swim. Such a simple mission that ended in such tragedy. I watched as strangers swam out in an attempt to help strangers swept out by the power of the ocean currents. I watched as lifeguards plunged into the ocean to save lives. I watched as four people were pulled to shore, two gray and lifeless. And I watched as teams of paramedics worked for ten minutes straight trying, to no avail, to resuscitate a man and his wife. Two lives taken by a rip current. In an instant. Life is so fleeting. And these are moments that remind me of that truth.
I was deeply disturbed by what happened today, not just because of what I witnessed, but because I know it could have happened to anyone. To me, even. We were out in the ocean today too. WITH the kids! (As an aside: They do wear life vests whenever they are even near the ocean...by far the best investments we have ever made!) But I guess today was not my time. So now I will take the events of today with me for life and use them to count my blessings. To be thankful for every day that I have. For all of the people in my life.
Sunday, July 25, 2010
This was a bright spot in the weekend for the kids and myself. That and the fact that Coulby is getting through another illness at HOME! He started complaining of a sore throat around last Thursday, was waking up in the night Thursday night into the early hours of Friday morning, and had started with decreased appetite somewhere in between all of this. There was obviously something going on, but we did not know what until late Friday afternoon. I had thought nothing of the sore throat until little reddish bumps resembling bug bites started popping out on Coulby's ankles, the bottoms of his feet and around his hands. He had the telltale sores in the back of his throat, common to Hand, Foot and Mouth disease. UGH!!!!
Saturday, July 17, 2010
It ain't easy being cheesy!...OR...Say cheese!...OR...The adventures of Coulby and the twisted cheese curls!
And these are no ordinary cheese curls. They are TWISTED cheese curls. These spiral things that look cool and take up a lot of room in the bag to make it look full even though it is not (one of the most annoying things about any bag of chips, really). 28g of cheese curls = 1.8g of protein and 160 calories. Coulby can eat about 75g or so in one sitting...about 429 calories! *Gasp* Guess most parents would be horrified that their child was consuming that many calories from cheese curls. But not parents of children with UCDs. The more calories the better. Kind of a foreign concept in this world of over-consumption and gluttony.
Not only does Coulby love cheese curls...twisted...but he makes sure he gets every last little bit of cheesy coating at the bottom of the bag. Kinda gross, but whatever works. Hence the above photo. That was Coulby post-empty-cheese-curl-bag. He had this cheesy beard and mustache going on that, while disgusting, was also very photo-worthy. I did not capture it well enough to do it justice, but the cheese was coated on his face, fingers and body pretty good. I could not be happier that there is something that I KNOW he will eat if nothing else. Until he gets tired of the twisted cheese curls, they will stock the pantry shelves.
On another note, Coulby had a Hopkins appointment yesterday. And his ammonia was...(drum roll)...29!! Yay! A number we can work with for sure! He has gained weight (thanks to twisted cheese curls, no doubt) and had an overall good check-up. Good news is always nice to report. A relief. A reminder of Coulby's miraculous life.
Friday, July 9, 2010
"Look at life through the windshield, not the rear-view mirror."
"You come to love not by finding the perfect person,but by seeing an imperfect person perfectly."
"A friend is one to whom one can pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keeping what is worth keeping, and, with the breath of kindness, blow the rest away."
"While we try to teach our children all about life, our children teach us what life is all about."
"The average pencil is seven inches long, with just a half-inch eraser-in case you thought optimism was dead."
Tuesday, July 6, 2010
Tuesday, June 29, 2010
"When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure."
Saturday, June 12, 2010
Thursday, April 29, 2010
*May 5, 2010: I started this blog on the 6 year anniversary of Coulby's diagnosis and could not finish it. Not because my emotions overcame me. Not because I found it difficult to talk about how my life was turned inside out by Citrullinemia. But because it is truly a task to convey what it feels like to go from having a seemingly "normal" newborn to one who is diagnosed with a potentially fatal disorder. Those who have never experienced this just have no idea how it feels, to no fault of their own. My hope was to recap that day in such a way that everyone, UCD families or not, could experience what I felt. And I just do not know if I can do that. Taking a break from the post does not seem to have sparked any creativity.
Monday, April 19, 2010
"There's no such thing as simple. Simple is hard."
And what a tough pill to swallow in a world where the main objective is to make everything more simple. Simple ready-in-minutes meals for the active family. Super absorbent paper towels for quick and simple clean up. Online banking for fast, simple bill paying. Simply put, we go to so much trouble to make things simple for ourselves that we forget what it takes to put the work in for the ultimate outcome. I am not immune to wanting my life to be simple. It just isn't. When Coulby was born, simple redefined itself in my world. My life pre-Coulby now seems simple. My life when Coulby is healthy and metabolically stable seems simple. But in the times when every day is a struggle to keep up with what he needs to thrive, I realize how not-so-simple life truly is. And how not-so-simple his every day is, living with Citrullinemia. The last week has been one of those reminders that always snaps me back into reality. HARD! You would think that after (just days shy of) 6 years of living this UCD life that I would not get such whiplash every time we hit the metabolic wall. But it happens every time. Every. Single. Time.
Okay, so usually I allow myself to ignorantly believe that once we get through March, all of the nasty germs that kids spread back and forth to each other will kind of dissipate. And I know that must sound ridiculous to most, but it is my attempt to will away any illness from touching Coulby after the long Winter of colds, stomach viruses, flu, fevers...you get the point. You can imagine my disappointment when Coulby was sick, yet again and in April no less, with a stomach virus not so long after the last round that he so graciously shared with all of us. The stomach virus that landed him in the hospital for a 4-day stay from hell. *Shudder* I do not even like to think about it. Brings me back to a very bad place, mostly for Coulby, but also for myself. So anyway, Coulby was sick yet again.
He started not feeling well about a week and several days ago. Just not eating. Saying his stomach hurt. No details, but going to the bathroom a lot. Throwing up if we tried to push food on him to meet his daily protein and calorie requirements. The poor kid was just sick and there we were trying to force food and drinks on him from sun up to sun down. It does not make me feel good to say that. For all of Coulby's life I have mourned not being able to take care of him while he is sick the way a mom should. The way my mom always took care of me when I was not feeling well. Coulby might as well have me saying that 'sick' is a non-existent word in his vocabulary. That he might as well scratch it out because he cannot be sick. Not like other kids.
The not eating or wanting to drink anything other than water went on for about a week. Literally, we were just waiting for the moment when we would have to bring Coulby to Hopkins. I always wonder how long he can possibly go without meeting his metabolic requirements before he gets into trouble and needs medical attention to pull him out of it. It is scary. And I really believe it is that fear that makes going through each and every illness so stressful. It is that fear that people do not understand. And the struggle that no one can understand is having a sick kid and still having to get him to eat. What do you feed a kid with a stomach virus? A picky eater, no less. Do you want to eat anything when your stomach hurts? Now you see why I say that when Coulby is sick, life is not simple. Not at all. For the most part, our daily routine in caring for him has become second-nature. But we are reminded of the smallest things that we do every day to keep him alive and well when he is sick. Because that balance gets so thrown off and we so desperately try to gain it back.
Coulby finally met all of his protein requirements today for the first time in well over a week!! This is blog-worthy. And if you are a parent of a child with a UCD, you know why. Because it is that opportunity to kind of breathe again. To live again. Coulby is finally asking for food. And drinking milk. And tormenting his sister with a vengeance (ah, sibling rivalry). Coulby is back! Oh how sweet it is!
And now I can resume life under the illusion of simplicity. Go through the motions and slip into our "normal" routine again. Into the daily rituals that usually seem so simple, but become so hard when we are thrown a metabolic curve ball.
Thursday, April 15, 2010
Honestly this week has been such a test of patience. I am failing miserably. It does not help that patience is not a virtue I am blessed with. Then to have to maintain patience with Coulby when he does not want to eat anything, and I mean ANYTHING, well...it is just next to impossible for me. And I know that he did not ask for any of this. This life that he was given: always having food pushed on him, always having to drink his concoction of formula and medicine, having monthly blood draws at Hopkins and enduring hospital stays when illnesses cannot be managed from home. The poor kid has been through so much in his short life.
Here is to hoping that after four days of not feeling well, Coulby will start to rebound and get back on metabolic track. It is emotionally and physically draining to be a parent of a child with a metabolic disorder any day, but especially when he gets sick. My impatience comes mostly from my fear of Coulby becoming hyperamonemic, with the possibility of brain damage, and ending up at Hopkins, confined to a bed with an IV in his arm for several days. I know that people cannot really know what this experience is like unless they live it, but I always hope that by blogging, those who do not live with a UCD day in and day out can at least learn what it means for those of us who do. And for those who do, I have the utmost respect for you because I know exactly what it is like!
Saturday, March 6, 2010
Sunday, February 28, 2010
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.
Sunday, February 14, 2010
How can a day symbolize love? Do chocolates and cards adorned with hearts and flowers and jewelry and lingerie encompass what love is all about? Red and pink are the colors of love? Valentine's Day confuses me. There is nothing in this world that can possibly say enough, cost enough or be enough to convey "I love you" from one person to another. You do not have to agree. This is strictly my opinion, after all.
I have not always felt "Bah humbuggy" about Valentine's Day...the day of love. My husband proposed to me on Valentine's Day way back when. He has given me flowers, taken me out for a nice dinner, given me gifts and cards and stuff like that in the past too. And I have liked it all. But now I kind of see it as a commercial holiday where people almost feel obligated to buy something that says "I love you." I prefer a homemade card with non-Hallmark sentiments written inside. Once my husband (then my boyfriend) made me a bowl of strawberries...he cut each slice into a heart shape. Each slice! Do you know that I would take that over jewelry any day? And when we were in high school he made me this heart in ceramics class and filled it with wax to make me a candle. Those are the Valentine's Day gifts that hold the most meaning for me. They need no words. Words would diminish their meaning.
For all of the hopeless romantics out there, celebrate on! Valentine's Day can be fun. I am just saying that there is more to it than its superficiality. Sometimes it really is better to say nothing at all.
Saturday, February 6, 2010
With the huge blast of Winter weather that has so graciously dumped mid-thigh-high snow (yes, I am short!) across Maryland, the comatose state has graduated to delirium. The kids have been cooped up in the house for days on end...hence the delirium. I have cleaned up the same toys about a million times. I have broken up the same fight about two million. I have bundled and unbundled each kid in layers of snow clothes I do not even know how many times now. I have watched 'The Incredibles' the whole way through about 2 times a day. I hear shrieks and cries and squeals and "Mommmmyyyy!" in my sleep. I am edgy and jumpy and irritable and wound up tighter than Coulby's bongo. And at the same time, I am also finding humor in it all. Because at a certain point, everything becomes humorous. I have to laugh...that or I will cry!
How many days are there until the official calendar start of Spring? Of course I do know that it does not mean all of the cold weather magically dissipates on March 20, but at least it is Spring. But since there is still snow on the ground, and snow falling from the sky as I type, I did break out the camera and my new macro lens (thanks, dad!) to try to capture the anatomy of a snowflake. So far no luck. Have you ever really studied a snowflake? Caught one on your sleeve and looked at its pattern? I would love to have that permanently frozen in a photo.
So now that I have professed my undying love for snow and Winter and cold (ha), I should emphasize that Coulby is healthy and home to enjoy the snow. Ultimately, no matter the weather, that is the most important thing. I complain, but I am also celebrating that I am stuck at home watching the snow come down rather than having to watch it from a permanently-stuck-shut hospital room window. I will gladly trade productivity for laziness; my sanity for delirium. If it means all of my family is home, happy and healthy, bring it on!
Thursday, January 21, 2010
Coulby is having a great Winter (knock on wood!). While he has brought home colds and nasty viruses accompanied by fever, and one VERY persistent virus that he so graciously passed on to all of us, he has been metabolically stable. *Celebrate!*
Coulby's last several Hopkins appointments have gone well and yielded nice, low ammonias and fairly stable amino acids. A few minor adjustments to his diet and medication and he has been good to go. We have been managing to get all required protein and calories into him each day without too much of a struggle. Because we increased the one medication a little bit, Coulby can really taste more medication than formula now, and lets us know it. He will very firmly tell us, "I hate my formula because it tastes nasty!" It makes me feel badly because I know how awful it is, and I do not want to give him something so gross, but he has to have it. There is nothing I can do but tell him that I am sorry he has to drink it, but it keeps him healthy and home. Coulby seems to get that.
Coulby is doing well in Kindergarten, although he has a VERY short attention span and LOTS of energy. It makes it difficult for him to complete every task and stay focused. He loves going to school though. He is disappointed on the weekends when he asks if it is a school day and I say no. I get the, "Ohhhh, nuts!" A Coulbyism. I like that he is excited about school...how long will that excitement last? I do not think he will be getting on the bus to go to high school so happily and willingly.
So things here have been fairly quiet...not literally. Two kids can make a lot more noise than I ever imagined. Especially a brother and sister quarrelling! We have more and more of that in our house. I feel like I should be wearing black and white with a whistle around my neck! But when Coulby and Caroline play well together, it is so much fun to watch and hear. Their make-believe worlds sound like a great escape from reality.
Now that I am back in the world of blogging, I am going to make it a point to post more regularly. (Do you hear that, Mindy?) My main goal behind establishing my blog was to educate those unfamiliar with UCDs. To raise an awareness by telling Coulby's story. And I still believe in that. So look for more posts soon. Until then...