I am approaching my second solid week of medical leave with my son. This is, I believe, the longest contiguous break I've had from work since he was born and my maternity leave ended. So far, so good.
T-man is healing up really well. He is still sore right at the surgery spot but has continued to refuse any pain medication. The soreness only affects bathroom stops and wiping (hey, you don't want to hear about body functions, go find another blog, LOL). He's still on a bigger-than-before dose of Miralax to make sure that nothing hurts coming out. He is about 50% in underwear, 50% in pull-ups. The extra Miralax sometimes gets things moving a bit too fast for him. Before his surgery he wore a panty-liner in his big-boys every day because the prolapse would rub and bleed through his pants. This past week, when not fighting liquid stool, his pants are staying dry and clean!
Besides that part, it's just summer break. He can't sit in a bathtub or pool, but showers are fine, so we have gotten out the sprinklers and water guns. We decorated kites then flew them at the park. He did play at the park, but knows not to go down a slide on his bottom (yes, for once I'm telling him to go on his tummy, feet first of course). The kids have had way more screen time than average (because what's a good old fashioned summer break without some mind-numbing couch potato time). Every morning at breakfast time they also do a couple of pages out of school workbooks (multiplication and division practice for the soon-to-be 4th grader, and a variety of reading/writing/math/clocks/time/etc sheets for the little guy). We've been to the library to sign up for their summer reading program, and collected a prize each. We went to a concert (Casting Crowns, at Six Flags, in the pouring rain and thunder).
We still have a few to-do's on our wish list to check off. Paint pottery, see a movie, go to the zoo, do some drawing. And finish writing the novel I've been working on for 1.5 years. (Seein as how I've been known to hammer out a first draft in like 3 months, this particular story is driving me insane) I'm down to 2 scenes before I can type The End and set it aside to "rest"...I think editing this one will be a breeze because my self-editing process takes more of a fixed amount of time. Also, I abhor this story. It's either the worst thing I've ever written or it's brilliant (my money's on "worst").
I think by the follow-up visit next week that I will have little to no vacation or sick time left, so my husband will be the primary sick-day-parent for the next several months. I'm not upset with that. I'm a little sad that I'm unlikely to have enough vacation left for an actual Vacation this year, but 2.5 weeks off in June isn't bad. Wish I could do this every year (minus the surgery of course).
Showing posts with label VACTERL. Show all posts
Showing posts with label VACTERL. Show all posts
Tuesday, June 18, 2013
Monday, June 10, 2013
Number Six
Last week was my son's sixth surgery. Granted, #5 was tubes in his ears, a procedure that was fast and very commonplace. But #6 was yet another bowel-related one, this time for a rectal prolapse--to repair a small amount of "mucosa" that stuck out his bottom. Looked a lot like a hemorrhoid, and it was constantly irritated. Poor kid had to wear a pantyliner in his big boys so that the bits of blood and mucous didn't bleed through onto his clothes. And though he actually has really good bowel control (amazing, given that he didn't actually have an anus at birth), the prolapse got in the way sometimes of him feeling when he needed to go or when he was finished.
Wednesday, he got to do a "bowel prep". If you've ever had a colonoscopy, then you can empathize. Instead of the "golightly", they had him drinking large quantities of Gatorade with Miralax. This approach is apparently as effective as the golightly but gentler and tastes better. We started around lunchtime, and he got to choose his flavor of drink for each successive glass (we had like 6 different colors on hand to pick from). We played video games. We watched TV. For a good long while, he sat on the toilet and played on a tablet or Leapster. I set up a small folding table in front of him so we didn't lose any electronics into the potty (something that has happened in the past..)
Thursday morning we arrived at the hospital at 7:15. He changed into hospital jammies, and tried (vehemently) to decline having his blood pressure taken. For some reason, those silly blood pressure cuffs terrify him (makes cardiologist visits load of fun). He told everyone who walked in the door that he didn't want any shots. They gave him a relaxer, most of which he spit out because it tasted bad. He got to choose the scent for the mask they would use for the gas that would put him to sleep. The IV went in when he was already out (and it was more of a soft tube rather than a stiff needle).
The surgery went well. He slept for quite a while He was awake and ordering lunch by about 2pm--pancakes and sausage. Unfortunately for us, he had a roommate for the hospital stay. The other little boy had had some sort of spinal surgery and had already been there for a few days (and would stay a few days longer). That kid was not comfortable, and frequently fussed, sometimes outright crying. It bothered my husband and I more than it did our son. The two boys were of similar age, and they did occasionally watch the same TV show and talk a bit through the curtains.
T-man could go on "adventures" as soon as he felt up to it, and the nurse found us a sort of car-type wagon complete with steering wheel. The IV pumps can run on battery for hours, so we'd just unplug and try not to run over tubes as we explored. St. Louis Children's Hospital has a gorgeous rooftop garden that overlooks Forest Park. They also have a patient playroom. The first floor has a big ball track machine where rubber balls travel through a maze of tracks and spirals, sometimes bouncing into baskets, sometimes ringing bells. We visited it a couple of times.
I spent the night in the hospital while my husband and my mom (who visited from Indy) drove home to sleep. There is a chair that pulled out into an approximation of a bed. It would have been better if our roommates had actually turned out the lights on their half of the room, or at least turned off the TV before midnight. My little guy fell asleep around 9:30 and stayed out all night. I woke up about every hour all night as something beeped, someone fussed, the lights were on, a nurse came into the room for one kid or the other.
Thankfully, we came home on Friday. T-man is doing great. He has some restrictions on activities, but nothing horrible. No tub baths. No climbing. Try to not sit straight on his bottom for too long. Be careful of the area (no itching!). For the moment he's wearing Pull-Ups, but even with his digestive system still off-balance from all the Miralax, he's continent. So we may be back in big-boy underwear pretty fast. Ideally with no liners, but only time will tell if the surgery completely fixes that problem, or if he will always need a little extra backup.
I'm off work with him for about two weeks while he heals enough to go to summer day camp. By the end of it, I will be out of sick days for quite a while, but that's fine. As a happy side effect, my daughter gets a 2-week break from summer camps. Neither of my kids have ever gotten a true summer vacation where they play outside and sit around the house feeling bored. That's a big downside to having a non-education career--I don't get summers off either. We can't go swimming or do big exercise-intensive activities. but it should still be a decent little break. And if the weather cooperates, we may get to watch our deck being built before we start back into the daily grind.
Wednesday, he got to do a "bowel prep". If you've ever had a colonoscopy, then you can empathize. Instead of the "golightly", they had him drinking large quantities of Gatorade with Miralax. This approach is apparently as effective as the golightly but gentler and tastes better. We started around lunchtime, and he got to choose his flavor of drink for each successive glass (we had like 6 different colors on hand to pick from). We played video games. We watched TV. For a good long while, he sat on the toilet and played on a tablet or Leapster. I set up a small folding table in front of him so we didn't lose any electronics into the potty (something that has happened in the past..)
Thursday morning we arrived at the hospital at 7:15. He changed into hospital jammies, and tried (vehemently) to decline having his blood pressure taken. For some reason, those silly blood pressure cuffs terrify him (makes cardiologist visits load of fun). He told everyone who walked in the door that he didn't want any shots. They gave him a relaxer, most of which he spit out because it tasted bad. He got to choose the scent for the mask they would use for the gas that would put him to sleep. The IV went in when he was already out (and it was more of a soft tube rather than a stiff needle).
The surgery went well. He slept for quite a while He was awake and ordering lunch by about 2pm--pancakes and sausage. Unfortunately for us, he had a roommate for the hospital stay. The other little boy had had some sort of spinal surgery and had already been there for a few days (and would stay a few days longer). That kid was not comfortable, and frequently fussed, sometimes outright crying. It bothered my husband and I more than it did our son. The two boys were of similar age, and they did occasionally watch the same TV show and talk a bit through the curtains.
T-man could go on "adventures" as soon as he felt up to it, and the nurse found us a sort of car-type wagon complete with steering wheel. The IV pumps can run on battery for hours, so we'd just unplug and try not to run over tubes as we explored. St. Louis Children's Hospital has a gorgeous rooftop garden that overlooks Forest Park. They also have a patient playroom. The first floor has a big ball track machine where rubber balls travel through a maze of tracks and spirals, sometimes bouncing into baskets, sometimes ringing bells. We visited it a couple of times.
I spent the night in the hospital while my husband and my mom (who visited from Indy) drove home to sleep. There is a chair that pulled out into an approximation of a bed. It would have been better if our roommates had actually turned out the lights on their half of the room, or at least turned off the TV before midnight. My little guy fell asleep around 9:30 and stayed out all night. I woke up about every hour all night as something beeped, someone fussed, the lights were on, a nurse came into the room for one kid or the other.
Thankfully, we came home on Friday. T-man is doing great. He has some restrictions on activities, but nothing horrible. No tub baths. No climbing. Try to not sit straight on his bottom for too long. Be careful of the area (no itching!). For the moment he's wearing Pull-Ups, but even with his digestive system still off-balance from all the Miralax, he's continent. So we may be back in big-boy underwear pretty fast. Ideally with no liners, but only time will tell if the surgery completely fixes that problem, or if he will always need a little extra backup.
I'm off work with him for about two weeks while he heals enough to go to summer day camp. By the end of it, I will be out of sick days for quite a while, but that's fine. As a happy side effect, my daughter gets a 2-week break from summer camps. Neither of my kids have ever gotten a true summer vacation where they play outside and sit around the house feeling bored. That's a big downside to having a non-education career--I don't get summers off either. We can't go swimming or do big exercise-intensive activities. but it should still be a decent little break. And if the weather cooperates, we may get to watch our deck being built before we start back into the daily grind.
Wednesday, January 12, 2011
Day 4: Epcot
Monday was also cold, though not nearly as bad as Sunday had been. With the afternoon sunshine, we were even able to take off our coats briefly. We got a slightly later start than we had the day before. The four of us were exhausted from having a couple of late nights and early mornings in a row. It was nice to let the kids sleep until they were ready to stir rather than throw clothes on their snoring bodies. And we knew that we could come back to Epcot for a second day if we wanted to.
One of our big concerns with the trip had been Trystan and potty training. Through some combination of physical issues and stubborn-three-year-old issues, he is about 80-98% potty trained. 98% when he is eating well and sticking to a schedule and not sick and not testing every boundary. 80% the rest of the time. We knew from our other family trip that travel is especially hard on the kid with so much time spent sitting still in the car, and eating restaurant food, and not being near to a restroom at exactly the right time every day. (If this is too much information, feel free to skim down past the poop paragraphs). My husband reports that most of the men's rooms in Disney had child-sized urinals, so Trystan enjoyed the opportunity to practice his standing techniques. Of course, standing is not sitting, and it's the sitting activities that trip Trystan up.I can probably sum the week's potty experience up as not great. We have dealt with worse, but his system got all out of whack and by the end of the week he was almost exclusively back in pull-ups because there are just so many changes of clothes we can carry around in a given day (and even if you double-bag it, poopy underwear smells really bad). Did I mention that our room had a washer/dryer? We used it. Nightly.
One of the funnier parts of the day had to do with Trystan and pottying but not with poopy underwear. After one of the rides, we asked the kids if they needed to take a potty break. I guess Trystan thought we meant *right here, right now*, because he pulled down his pants and peed on a bush. Bad parent that I am, instead of reprimanding the kid I laughed. And posted it to Facebook.
That night, we had an extremely cold dinner at one of the Japanese restaurants where Charlotte eagerly tried her first sushi. We actually ate on the patio because there was no room inside. It was a little surreal eating in 30 degree cold with our gloves on, surrounded by paper lanterns and Japanese style gardens, with Christmas choral music playing in the background. It turned out we were really close to the big Candelight Dinner Show.
After dinner, we wandered through some of the shops and then stopped at the big silver ball for one last ride. On the way out, you pass through an arcade-like area with video driving games. The game is pretty fixed, you pretty much win every time you play as there is almost no driver input. And yet, Trystan and my husband managed to break their game. Trystan found the one spot in the game where he could flip his car over, which left the game completely confused about what to do next.
Wednesday, March 31, 2010
Cautiously optimistic
The whole country’s been following the health care debate, and I’m sure its been discussed ad nauseum on blog after blog. I’m not a political analyst, or a lawyer. I’m a mom. Of a little boy who, though full of life (and mischief), also has several very serious medical issues which will follow him forever.
So I’ve been watching the health care debate too, with cautious optimism.
Quoting a Post Dispatch article from today (which I think is quoting someone else, who is probably quoting parts of the new law):
"children with pre-existing conditions may not be denied access to their parents' health insurance plan," and "insurance companies will no longer be allowed to insure a child but exclude treatments for that child's pre-existing condition."
I hope that this is good news for Trystan’s (and millions of other kids’) future. We have been lucky to have obscenely wonderful healthcare coverage, which has paid for all of Trystan’s care with surprisingly little out of our own pockets. And I live in fear of what happens if we lose that coverage. Even with two good incomes, we couldn’t have afforded Trystan’s first three weeks of life, let alone three years.
I still don’t trust for-profit companies to make decisions with their hearts instead of their wallets. But I think it’s a start. And a very timely one for us.
Sunday, February 21, 2010
Big Boy
My not-quite-3-year-old has been out of diapers for a little over a week. It's a small miracle. Honestly. For once, there's no sarcasm here. (who, me?) BTW, this is a poop post. If you don't care to read about potty training, well, see you next post (or the next, possibly...).
When he was taken across town to St. Louis Childrens at less than 24 hours old for an emergency colostomy, the first of 4 surgeries to repair an imperforate anus, we were told that there was a range of possible outcomes. A range that included losing him, permanent incontinence, all the way to having a mostly normal life. I was either told or read that 15% of kids with his specific bowel issue eventually gained continence. Still talking the poop kind here, as there was a separate statistic for the bladder control, which was also in jeopardy.
Luckily, the doctors forgot to explain that to Trystan.
I'm not bragging that my 35 month old boy is a perfect potty-er yet. But by golly, he's wearing underwear and staying dry as well as the average kid his age. And those italics are because boys are stereotypically harder to potty train than girls. He's had an assortment of accidents all week, and we're sending changes of clothes to daycare every day. One day he used them all up and came home in a pull-up. Friday he came home in his original, unsoiled clothes.
I don't think Charlotte did that well in her first week in underwear (or her first month, actually...she was a royal pain about pottying).
He's still getting used to pooping on the potty. He takes a long time and complains, loudly, about it (I may need to stash earplugs in the bathroom or will be getting hearing aids by the time we're through). But if you make sure he sits there and actually goes, then he gets the job done. Yes, potty training someone with bowel issues is serious training. And he's a 2-year old, with all of the tantrums and stubbornness that come with the age.
But still, I'm thrilled. He's so proud of his "big-boys". Wearing them was actually his idea (though he's tried to ask for his diapers back once or twice since then). I'm sure there will be setbacks. And we have to continually monitor his diet (and medicines) to make sure that he goes. But it's a big, big step.
When he was taken across town to St. Louis Childrens at less than 24 hours old for an emergency colostomy, the first of 4 surgeries to repair an imperforate anus, we were told that there was a range of possible outcomes. A range that included losing him, permanent incontinence, all the way to having a mostly normal life. I was either told or read that 15% of kids with his specific bowel issue eventually gained continence. Still talking the poop kind here, as there was a separate statistic for the bladder control, which was also in jeopardy.
Luckily, the doctors forgot to explain that to Trystan.
I'm not bragging that my 35 month old boy is a perfect potty-er yet. But by golly, he's wearing underwear and staying dry as well as the average kid his age. And those italics are because boys are stereotypically harder to potty train than girls. He's had an assortment of accidents all week, and we're sending changes of clothes to daycare every day. One day he used them all up and came home in a pull-up. Friday he came home in his original, unsoiled clothes.
I don't think Charlotte did that well in her first week in underwear (or her first month, actually...she was a royal pain about pottying).
He's still getting used to pooping on the potty. He takes a long time and complains, loudly, about it (I may need to stash earplugs in the bathroom or will be getting hearing aids by the time we're through). But if you make sure he sits there and actually goes, then he gets the job done. Yes, potty training someone with bowel issues is serious training. And he's a 2-year old, with all of the tantrums and stubbornness that come with the age.
But still, I'm thrilled. He's so proud of his "big-boys". Wearing them was actually his idea (though he's tried to ask for his diapers back once or twice since then). I'm sure there will be setbacks. And we have to continually monitor his diet (and medicines) to make sure that he goes. But it's a big, big step.
Tuesday, July 28, 2009
Little Monkey
Never believe the word of a two-year old.
Trystan had a doctor's appointment at Children's Hospital around lunch time today. So we went to the zoo. Char will be disappointed when she hears that, but she had swimming lessons at preschool, and it was nice to have a day with just me and Trystan.
The zoo was fun. Trystan doesn't ask complicated questions about all of the animals--he is more focused on locating them, saying what color, and sometimes counting them. So we cover more ground than I do with Charlotte along, spending a lot less time at every stop. We saw the penguins, chimps, the bird house, primate house, and herpetarium, and some of the plains animals--gazelles and zebras (ce-ba), etc.
We finished with a ride on the zoo train. By then, my hips were about to kill me. I had made the mistake of asking Trystan if he wanted to walk or ride in the stroller, and he insisted--several times--on walking. But I think he meant he wanted me to walk. I carried him halfway around the zoo.
After the zoo, we went to Childrens and ate lunch in the cafeteria before the appointment. He insisted on hot dogs (little smokies actually) and pretzel bites from a hot food bar, but never touched the pretzels. Ah well.
The doctor visit was with the surgeon who did all of Trystan's bowel surgeries. In general, my little boy is doing really well. The fact that he's interested in potty training at all at his age is ahead of the curve for boys who have no issues. The fact that he occasionally even tells us he needs to poop and then goes in the potty is way way way ahead of the curve for a baby with his defects (it wouldn't be unheard of for him to NEVER get that far given his medical history, and he's not even 2.5...). Diagnosis: keep up with the good eating habits, tiny amount of daily laxative, and potty encouragement, and we'll see where he goes from here.
It was a good day. But next time, I'm bringing the stroller.
Trystan had a doctor's appointment at Children's Hospital around lunch time today. So we went to the zoo. Char will be disappointed when she hears that, but she had swimming lessons at preschool, and it was nice to have a day with just me and Trystan.
The zoo was fun. Trystan doesn't ask complicated questions about all of the animals--he is more focused on locating them, saying what color, and sometimes counting them. So we cover more ground than I do with Charlotte along, spending a lot less time at every stop. We saw the penguins, chimps, the bird house, primate house, and herpetarium, and some of the plains animals--gazelles and zebras (ce-ba), etc.
We finished with a ride on the zoo train. By then, my hips were about to kill me. I had made the mistake of asking Trystan if he wanted to walk or ride in the stroller, and he insisted--several times--on walking. But I think he meant he wanted me to walk. I carried him halfway around the zoo.
After the zoo, we went to Childrens and ate lunch in the cafeteria before the appointment. He insisted on hot dogs (little smokies actually) and pretzel bites from a hot food bar, but never touched the pretzels. Ah well.
The doctor visit was with the surgeon who did all of Trystan's bowel surgeries. In general, my little boy is doing really well. The fact that he's interested in potty training at all at his age is ahead of the curve for boys who have no issues. The fact that he occasionally even tells us he needs to poop and then goes in the potty is way way way ahead of the curve for a baby with his defects (it wouldn't be unheard of for him to NEVER get that far given his medical history, and he's not even 2.5...). Diagnosis: keep up with the good eating habits, tiny amount of daily laxative, and potty encouragement, and we'll see where he goes from here.
It was a good day. But next time, I'm bringing the stroller.
Monday, June 08, 2009
Going slow
Some days, nothing seems to move very fast.
The kids were up late last night, enjoying dinner and playtime with friends. Charlotte was so tired when we got home, that she fell asleep in the bathroom. Sitting on the stepstool, toothbrush in hand.
She was dragging this morning, too. We all were.
I'm in a training class for the next three days that doesn't start until 9am. Since I normally aim to be at my desk by 8ish, I should have had bonus time today. Um, no. I walked in at about 10 after. I didn't get the kids to daycare until almost 8:30, and I don't think I passed 10 mph for the last 20 minutes of my drive. Traffic. Rain. Stoplights that were just plain out.
On the up side, Trystan woke up this morning 1) in a good mood, and 2) with no poop in his diaper.
Yep, its a poop post. Poor kiddo was on anitbiotics a couple of weeks back, which gave him the runs. On the back side of those, his system slowed way down. That's never a good thing for him. We'd been off of his daily Miralax for a couple of months, but we're now back on it for a week or two at least.
Oddly enough, when he gets constipated, he poops all the time. Just small smears though, never really emptying things out. After a weekend of miralax and prunes (and avoidance of pizza, mac & chz, and bananas--his favorite foods are his worst enemies), he's getting back to normal. So, no overnight poop. (thus, no rashy bottom). Hooray!
I was changing his diaper this morning and as soon as I got the soggy one off, he asked for "yuckies in the potty". And he put some yuckies in the potty. Just the tiniest bit, but we cheered for him anyway. I still have high hopes for him in the potty training department. I don't know that he'll ever be "normal" and be able to go completely without laxatives and careful diet control. But he's only 27 months, capable (though not always willing) of staying dry and tinkling in a potty for hours on end, and to control a small amount of poop in the potty. So far, he's actually ahead of the curve in potty training for his age. Gosh I hope he at least keeps up with that curve!
The kids were up late last night, enjoying dinner and playtime with friends. Charlotte was so tired when we got home, that she fell asleep in the bathroom. Sitting on the stepstool, toothbrush in hand.
She was dragging this morning, too. We all were.
I'm in a training class for the next three days that doesn't start until 9am. Since I normally aim to be at my desk by 8ish, I should have had bonus time today. Um, no. I walked in at about 10 after. I didn't get the kids to daycare until almost 8:30, and I don't think I passed 10 mph for the last 20 minutes of my drive. Traffic. Rain. Stoplights that were just plain out.
On the up side, Trystan woke up this morning 1) in a good mood, and 2) with no poop in his diaper.
Yep, its a poop post. Poor kiddo was on anitbiotics a couple of weeks back, which gave him the runs. On the back side of those, his system slowed way down. That's never a good thing for him. We'd been off of his daily Miralax for a couple of months, but we're now back on it for a week or two at least.
Oddly enough, when he gets constipated, he poops all the time. Just small smears though, never really emptying things out. After a weekend of miralax and prunes (and avoidance of pizza, mac & chz, and bananas--his favorite foods are his worst enemies), he's getting back to normal. So, no overnight poop. (thus, no rashy bottom). Hooray!
I was changing his diaper this morning and as soon as I got the soggy one off, he asked for "yuckies in the potty". And he put some yuckies in the potty. Just the tiniest bit, but we cheered for him anyway. I still have high hopes for him in the potty training department. I don't know that he'll ever be "normal" and be able to go completely without laxatives and careful diet control. But he's only 27 months, capable (though not always willing) of staying dry and tinkling in a potty for hours on end, and to control a small amount of poop in the potty. So far, he's actually ahead of the curve in potty training for his age. Gosh I hope he at least keeps up with that curve!
Sunday, March 22, 2009
Happy Birthday, Little One!
Today was a good day. I made a birthday cake, we went to church, we ate out twice, the children laughed all afternoon. Trystan refused to nap, probably because he had a very short one in the car between church and lunch. He's not good at resuming interrupted naps. But he got some wonderfully giggly Grandma and Grandpa time while his twin cousins (and their mommy) were napping on the big bed in his room.
Today was all about Thomas the Train. My son loves anything with wheels, and got a lovely little wooden Thomas train set from Santa. He's become a bit obsessed. Yes, we encourage him. If you've ever seen the Thomas tv show, and compared it to something high-pitched like Dora, you'd probably understand why. But he is welcome to enjoy other things, and yet he obsesses over his "choo-choo" jammies and his "choo-choo" toothpaste. After this afternoon's unwrapping fest, he now has several miles of wooden tracks (and a bridge!) and at least 500 more train cars to connect together. And new Thomas sheets to fit his toddler bed (which is still a crib for the moment). And a giant stuffed Thomas the Train pillow. And books, books, books. The kid's in heaven.
I even made him a Thomas the Train cake, as best I could. I don't know that the photos do it justice, which is probably a good thing. I'm no professional cake decorator :) The cake pan is not Thomas, just a train car "muffin" pan, but I did my best with icing and colored sugar. About halfway through the decorating, I was ready to chuck the whole thing and run to the grocery store for a real cake. And then Trystan saw what I was doing and started cooing "Ooohh! Wow!" at me every time I'd pick up a train car to add a new color. That made the whole thing worthwhile. Good thing we photographed it, because it was very tasty :) Unfortunately, he was a little sad later that it disappeared from the table (don't think he understood that when he was eating "Thomas" that the choo choo set was sliding down his gullet).
Today has been a bit hard for me. We plugged a memory card full of 4.5 years of photos into our Wii and let it cycle through them all afternoon. Watching Charlotte's baby photos, and toddler photos, and the few with my bulging Trystan belly make me sad for the days of Charlotte as the round, giggly 2-year old. And then a scanned version of one of Trystan's first ultrasound photos flashed on the screen. The ultrasound that told us that all was not well with the new baby. And then came the photos of Trystan in the NICU, GI tube taped to his face and PIC(?) line taped to his head. And the one of Charlotte with her baby brother, both cuddled on their daddy's lap, at home for the first time together on Easter Sunday that year.
I have a beautiful, smart, busy, mischevious, active, dexterous, fun, and currently quite healthy 2 year old boy. Not quite a baby, not quite a kid. He jabbers constantly, though his pronunciation sucks right now :) This week, he's been saying "cupcake" loud and clear. He likes to use the potty--but only when we're away from the house. He hits people when he gets frustrated (a habit we're working hard at breaking), and he loves to snuggle, and to give hugs when he's happy. His very kissable belly has two scars--one so faint you can hardly see it, the other large and ugly, though fading. I know within the next year or two we'll have to add a third, for his heart.Tonight, I'm happy and proud to be his mamma. And maybe a little teary, too.
Tuesday, January 20, 2009
The end
Trystan is now cordless. Wait, he’s been cordless since he was 5 days old. But he no longer requires a plug.
He no longer requires a pacifier, that is. Nuk, binkie, pacy, plug.
We actually let him keep it far longer than our original plan. Before he was born, I didn’t intend to start one at all. But then after learning to nurse for a day he was whisked to surgery and the NICU, and deprived of any food by mouth for about a week. He got a pacy. And, despite the surgery, and the pacy, and all the nasty pedialyte the NICU folks kept insisting that he drink (newborns don’t even get flavors…theirs tastes like licking concrete), he still learned to breastfeed.
At that point, we knew he was facing two additional surgeries, which later became three. And there would be more days of no eating. And we let him keep the pacy. Originally, he would be done with surgeries by about 5-6 months old. His last (of the bowel series) was at 9 months. So we let him keep the pacy even longer. And finally, there was the need for an MRI to rule out a tethered spinal cord. And if the test had shown tethering (it didn’t), then he would have needed more surgery. We let him keep the pacy much longer.
And then, last summer, he was 18 months old and using an infant-sized pacifier, and he was teething. A lot. And that darned pacifier (or rather, collection of them), became wonderfully portable and washable (dishwasher, baby) teething rings. So he kept it.
Last fall, he discovered that we had multiple pacifiers, and it became a GAME. Could he do tricks with it? Roll it over without using his hands? How many would fit in his mouth at once? Would Mommy or Daddy suck on the pacifier? We banished it to his bed, for sleepytime only. And if he wanted it while awake, he had to sit in the crib.
Finally, over Christmas, he had a couple of naps without it. And one night, my husband couldn’t find one at bedtime and Trystan fell asleep anyway. That was it. The end of the pacifier. We rounded up our remaining 3 pacies, and hid them out of sight. And though Trystan asked for it a couple of times later, we didn’t offer one.
The fallout hasn’t been so bad. There have been some nights and early mornings where I suspect Trystan might have put himself back to sleep if he’d found a pacy on his pillow. Instead, like this morning, he stand up and hollers until one of us (usually his daddy, who is a lighter sleeper and closer to the door) rocks him or brings him to our bed for a snuggle.
Now if we could only get his big sister to stop sucking her fingers...
He no longer requires a pacifier, that is. Nuk, binkie, pacy, plug.
We actually let him keep it far longer than our original plan. Before he was born, I didn’t intend to start one at all. But then after learning to nurse for a day he was whisked to surgery and the NICU, and deprived of any food by mouth for about a week. He got a pacy. And, despite the surgery, and the pacy, and all the nasty pedialyte the NICU folks kept insisting that he drink (newborns don’t even get flavors…theirs tastes like licking concrete), he still learned to breastfeed.
At that point, we knew he was facing two additional surgeries, which later became three. And there would be more days of no eating. And we let him keep the pacy. Originally, he would be done with surgeries by about 5-6 months old. His last (of the bowel series) was at 9 months. So we let him keep the pacy even longer. And finally, there was the need for an MRI to rule out a tethered spinal cord. And if the test had shown tethering (it didn’t), then he would have needed more surgery. We let him keep the pacy much longer.
And then, last summer, he was 18 months old and using an infant-sized pacifier, and he was teething. A lot. And that darned pacifier (or rather, collection of them), became wonderfully portable and washable (dishwasher, baby) teething rings. So he kept it.
Last fall, he discovered that we had multiple pacifiers, and it became a GAME. Could he do tricks with it? Roll it over without using his hands? How many would fit in his mouth at once? Would Mommy or Daddy suck on the pacifier? We banished it to his bed, for sleepytime only. And if he wanted it while awake, he had to sit in the crib.
Finally, over Christmas, he had a couple of naps without it. And one night, my husband couldn’t find one at bedtime and Trystan fell asleep anyway. That was it. The end of the pacifier. We rounded up our remaining 3 pacies, and hid them out of sight. And though Trystan asked for it a couple of times later, we didn’t offer one.
The fallout hasn’t been so bad. There have been some nights and early mornings where I suspect Trystan might have put himself back to sleep if he’d found a pacy on his pillow. Instead, like this morning, he stand up and hollers until one of us (usually his daddy, who is a lighter sleeper and closer to the door) rocks him or brings him to our bed for a snuggle.
Now if we could only get his big sister to stop sucking her fingers...
Monday, December 01, 2008
Every parent has a poop story. Blowouts, bathtubs, dinner table announcements from the potty training set....
My mom will tell you about me, a restaurant high chair, and a very kind waitress with a stomach of iron.
With Charlotte, we have a few fond memories. Like the carpet that I had to scrub when she was just a few days old, and when the stomach flu masquaraded as a UTI.
For Trystan...well, Trystan's first 9 months of life is one big poop story (or lack thereof). Imperforate Anus, colostomy, you look it up.
This weekend, exactly one year after his colostomy closure (and subsequent introduction to pooping in a diaper), we have added a new poop story to the menu. This one involves my mother-in-law's brand-new house (the laundry/powder room), a bent-over bare-bottomed baby, and an ill-timed cough. There was mopping. Clothes were changed. Four adults were involved in the cleanup, with a 4-year old serving as the sports commentator. Luckily, we will not be required to paint the walls. I do hope that they sealed the grout on the tile floors (if not, they might be considering it now...)
My mom will tell you about me, a restaurant high chair, and a very kind waitress with a stomach of iron.
With Charlotte, we have a few fond memories. Like the carpet that I had to scrub when she was just a few days old, and when the stomach flu masquaraded as a UTI.
For Trystan...well, Trystan's first 9 months of life is one big poop story (or lack thereof). Imperforate Anus, colostomy, you look it up.
This weekend, exactly one year after his colostomy closure (and subsequent introduction to pooping in a diaper), we have added a new poop story to the menu. This one involves my mother-in-law's brand-new house (the laundry/powder room), a bent-over bare-bottomed baby, and an ill-timed cough. There was mopping. Clothes were changed. Four adults were involved in the cleanup, with a 4-year old serving as the sports commentator. Luckily, we will not be required to paint the walls. I do hope that they sealed the grout on the tile floors (if not, they might be considering it now...)
Friday, October 17, 2008
Welcome Google Searchers....
It's strange to me that of all the crazy assortment of things that I write about on this blog, the posts that get the most hits from search engines have to do with 1) ultrasound results or 2) collecting a urine sample from a baby.
1) About the urine sample thing. I've now been in the position to experience (as the mother) collections from both boys and girls. Let me tell you, until they hit potty training stage, neither gender is fun.
As I posted a long time ago, for a baby girl, doctors can sometimes attach a collection bag around the genital area. When she pees, it goes in the bag. I think this method isn't the most sterile, so it probably depends on what kind of a test they're going to run--might be fine for a dipstick kind of thing, but probably not for an actual culture (where they watch it for a couple of days and check what kinds of bacteria grow).
For a boy, about the only method is a catheter (unless you're really lucky and catch him mid-pee). The doctor threads a very tiny tube up the ureter (yes, the pee-hole at the end of the baby boy's boy-parts!) and up into the bladder. There is a balloon somehow used through this tube up in tehe bladder to force the urine down the tube and into a waiting vessel. This eliminates contact with the outside skin, and allows less contamination. They will do this to girls, also, if they need to. From my own c-section experiences, the process doesn't hurt, but it feels really strange and annoying, and the baby will probably cry at first. My son Trystan had to have a catheter in place for nearly 2 weeks after one of his surgeries, and there were no bad side effects (swelling or bleeding or anything like that) once it was finally removed. Cringe-worthy, yes, and the worst part is having to watch it done to your baby.
2) Ultrasound results. My son had both a dialated kidney and a 2-vessel cord show up on his ultrasound. I cannot reassure another parent with a similar diagnosis that "its nothing" because its not nothing. It's definitely something. Trystan's story can be found in posts here, here, and here (and probably a whole lot more that I haven't linked--start reading around November '06). In his case, his dialated kidney was caused by one kidney being larger than the other--now at 1.5 years old, he has one good kidney (the larger one), and the other "kidney" is little more than a small amount of tissue that doesn't do much. The kidney was larger because it was doing the job of two. All he needs is one good kidney, so this is the least of our worries with his health (far below even routine ear infections and colds!)
The two-vessel cord (or single umbilical artery or several other name variations) was an early sign of his eventual diagnosis with VACTERL association. Sometime during early development (in the first trimester...probably within the first 4 weeks of pregnancy), something went wrong with development of his umbilical cord. Instead of 2 arteries and one vein, he got one artery and one vein. That made my pregnancy a high-risk one, where I had twice-a-week non-stress tests for the entire third trimester to monitor his heartrate and activity levels. Like most of Trystan's "problems", he sailed right through, strong and active. He does have heart defects--a VSD and an Anuerism in the Sinus of Valsalva. The Anuerism will require surgery, likely in the next year. But neither defect has ever caused him a day of grief so far (lots of echocardiograms, but that's all). And while the heart defects are related to the umbilical cord problem (and to the rest of his symptoms), they weren't caused by it.
If you're a parent facing any of these issues, welcome and I'm sorry! None are any fun! If you feel up to it, stay a while and browse around on my blog. Especially if you're expecting, have scary stuff show up in ultrasounds, and are fearing the worst. I hope you will find some hope here. Trystan is a special kid--smart, funny, absolutely adorable (don't believe me after hearing about all these "defects"? Check out some photos). I should videotape his giggle to share, it's that infectious and heartwarming. Sometimes the best things in life just require a little more effort on our part, that's all.
1) About the urine sample thing. I've now been in the position to experience (as the mother) collections from both boys and girls. Let me tell you, until they hit potty training stage, neither gender is fun.
As I posted a long time ago, for a baby girl, doctors can sometimes attach a collection bag around the genital area. When she pees, it goes in the bag. I think this method isn't the most sterile, so it probably depends on what kind of a test they're going to run--might be fine for a dipstick kind of thing, but probably not for an actual culture (where they watch it for a couple of days and check what kinds of bacteria grow).
For a boy, about the only method is a catheter (unless you're really lucky and catch him mid-pee). The doctor threads a very tiny tube up the ureter (yes, the pee-hole at the end of the baby boy's boy-parts!) and up into the bladder. There is a balloon somehow used through this tube up in tehe bladder to force the urine down the tube and into a waiting vessel. This eliminates contact with the outside skin, and allows less contamination. They will do this to girls, also, if they need to. From my own c-section experiences, the process doesn't hurt, but it feels really strange and annoying, and the baby will probably cry at first. My son Trystan had to have a catheter in place for nearly 2 weeks after one of his surgeries, and there were no bad side effects (swelling or bleeding or anything like that) once it was finally removed. Cringe-worthy, yes, and the worst part is having to watch it done to your baby.
2) Ultrasound results. My son had both a dialated kidney and a 2-vessel cord show up on his ultrasound. I cannot reassure another parent with a similar diagnosis that "its nothing" because its not nothing. It's definitely something. Trystan's story can be found in posts here, here, and here (and probably a whole lot more that I haven't linked--start reading around November '06). In his case, his dialated kidney was caused by one kidney being larger than the other--now at 1.5 years old, he has one good kidney (the larger one), and the other "kidney" is little more than a small amount of tissue that doesn't do much. The kidney was larger because it was doing the job of two. All he needs is one good kidney, so this is the least of our worries with his health (far below even routine ear infections and colds!)
The two-vessel cord (or single umbilical artery or several other name variations) was an early sign of his eventual diagnosis with VACTERL association. Sometime during early development (in the first trimester...probably within the first 4 weeks of pregnancy), something went wrong with development of his umbilical cord. Instead of 2 arteries and one vein, he got one artery and one vein. That made my pregnancy a high-risk one, where I had twice-a-week non-stress tests for the entire third trimester to monitor his heartrate and activity levels. Like most of Trystan's "problems", he sailed right through, strong and active. He does have heart defects--a VSD and an Anuerism in the Sinus of Valsalva. The Anuerism will require surgery, likely in the next year. But neither defect has ever caused him a day of grief so far (lots of echocardiograms, but that's all). And while the heart defects are related to the umbilical cord problem (and to the rest of his symptoms), they weren't caused by it.
If you're a parent facing any of these issues, welcome and I'm sorry! None are any fun! If you feel up to it, stay a while and browse around on my blog. Especially if you're expecting, have scary stuff show up in ultrasounds, and are fearing the worst. I hope you will find some hope here. Trystan is a special kid--smart, funny, absolutely adorable (don't believe me after hearing about all these "defects"? Check out some photos). I should videotape his giggle to share, it's that infectious and heartwarming. Sometimes the best things in life just require a little more effort on our part, that's all.
Thursday, August 28, 2008
Meme
I don't get tagged for memes much. Here's one from one of my VACTERL links. Check out little Gavin, who's a couple months older than Trystan and with some similar health problems. And he's nearly as cute :) Ok, he's probably just as cute as my guy, if not more, but I'm a momma so my children are always cuter than anyone else's. No exceptions. Little Gavin's mommy Kristin tagged me (hi!)
Here's the rules:
Here's how it goes:
1) Add the logo of the award to your blog
2) Add a link to the person who awarded it to you
3) Nominate at least 7 other blogs
4) Add links to those blogs on your blog
5) Leave a message for your nominees on their blogs
Here is my nominee list. In case you're curious, these are all folks that I went to college with (or who married someone I went to college with) (or who went to college with someone I married). I know of a couple more blogs that I could list in this same category, but I'm following the rules and limiting to seven.
For you lucky seven: if you don't feel like playing, well, then, I have no idea what the consequences are, but probably something dire. Like 9 lashes with a wet noodle. So there! :) Actually, some of these are less active than others, so there's a strong chance that they won't see the tag.
http://hiddenchicken.blogspot.com/
http://cpamommy.blogspot.com/
http://chaotic-revelations.blogspot.com/
http://mypetr0ck.blogspot.com/
http://fish-n-chips-with-a-pint.blogspot.com/
http://thesqueakymouse.blogspot.com/
http://developercoredump.blogspot.com/
Tuesday, August 05, 2008
Spines, batteries, and brakes
As usual, I am the quietest when there is the most going on at home. I feel like I haven't posted in forever, but thanks to Blogger's post-dating feature, you haven't even missed me yet. And never fear, I'm going to throw so much at you today that you won't want to check back in for at least another week.
I mentioned last week that Trystan had his MRI of the lower spine. Despite my worries about the radiology department's communication skills, we got the results last Tuesday. They actually called our pediatrician, who called us. In any case, the MRI showed NO SIGN of a tethered spinal cord! Hooray! Whew.
They got additional pictures of some of the issues we already knew about, namely his kidneys (or rather, his kidney singular) and vertebrae. Trystan has one (I believe) vertebrae that is malformed--I will have to get the pedi to write down the exact medical termniology (because I don't get enough search engine hits on this stuff as it is, LOL). Those are things that might be more annoying as he gets older--he has a higer chance of developing scoliosis, for example. But for now, we don't need additional surgeries (except for the future heart procedure that we already know about). No stressing about nerve damage. No additional specialists. No more tests, outside of his 6-month echocardiograms (those are just ultrasounds of the heart...not invasive at all).
Over the weekend, we went to my husband's family reunion. We didn't feel comfortable with Trystan and long drives with the colostomy last year, so we had skipped the last annual get together. It was the first time that most of the family had met Trystan, though everyone had heard about all of his issues. He charmed everyone, and all loved his hair. Trystan has "angel hair" like Charlotte did--it is so white it's nearly transparent, and sticks straight up all over his head, giving him a sort of halo. Char's eventually settled down once it grew long enough. With Trystan we'll have to start cutting it short eventually so that it doesn't look so goofy. It's adorable now.
The reunion was fun. It's always a big potluck, and this year we had a gathering room in hubby's grandmother's church, including use of their gym. There was lots of room for the kids to play, and about 1/2 of Char & Trystan's generation was in attendance (so, over a dozen kids from 3 months to about 12 years old were actually there). My father-in-law is one of 13 siblings, so the family is HUGE. Both of my kids had a blast.
We had a reservation to stay the night in town before driving home, and luckily, our car made it to the hotel before it died. Yep, it died. 200 miles from our home (and from my car) in a small town on a Saturday night, where most mechanics have Sundays off. We didn't discover the problem until after we'd checked in, swam, and were leaving to find dinner. My IL's, SIL and BIL & their twins had decided not to stay the night (the twins don't do well in hotels...my kids don't do well in cars...), so we were on our own. We changed our dinner plans and walked across the street to a closer restaurant.
After dinner, we found that one of my husband's cousin's family, coincidentally, were staying in the room right next to ours. They had car battery trouble too (must be the heat and all the travel accessories), but were able to start their car and then jump ours. Unfortunately, my husband's car battery would not hold a charge, even after an extended period of highway driving. Sunday morning, my husband's uncle jumped his car again, and accompanied him to a local auto parts store to buy a new battery. Their mechanics were not in for the day, but they loaned my husband some tools, and my husband changed his own battery.
Char and Trystan thought that hanging out in a hotel room and watching cartoons was all just part of the trip. Char, especially, was devastated when she found out that we were leaving for home, and not another exciting adventure. Maybe next year, kid, assuming our cars hold out.
Yesterday it was my turn for somewhat unexpected and expensive car repairs. My airconditioning was acting a little flaky last week, and my rear brakes were running fingernails down a chalkboard at every red light. My kids went to daycare as Char had swimming lessons. My husband worked from home to be on call to help me drop off and pick up the car. I took my day-off work and cleaned the house, with my cell phone in hand all day. They didn't get it done till after 5. All that cleaning was necessary, but today I'm wishing I'd spent more time online or watching a little tv or something that didn't involve bleach or toilets.
Now I'm hoping that I'll have less real stuff to talk about for a while, so I can get back to my normal random-thoughts-from-Kristi kind of posts. Like the one about leg hair that I've been considering writing. Maybe I'll schedule that for later this week :)
I mentioned last week that Trystan had his MRI of the lower spine. Despite my worries about the radiology department's communication skills, we got the results last Tuesday. They actually called our pediatrician, who called us. In any case, the MRI showed NO SIGN of a tethered spinal cord! Hooray! Whew.
They got additional pictures of some of the issues we already knew about, namely his kidneys (or rather, his kidney singular) and vertebrae. Trystan has one (I believe) vertebrae that is malformed--I will have to get the pedi to write down the exact medical termniology (because I don't get enough search engine hits on this stuff as it is, LOL). Those are things that might be more annoying as he gets older--he has a higer chance of developing scoliosis, for example. But for now, we don't need additional surgeries (except for the future heart procedure that we already know about). No stressing about nerve damage. No additional specialists. No more tests, outside of his 6-month echocardiograms (those are just ultrasounds of the heart...not invasive at all).
Over the weekend, we went to my husband's family reunion. We didn't feel comfortable with Trystan and long drives with the colostomy last year, so we had skipped the last annual get together. It was the first time that most of the family had met Trystan, though everyone had heard about all of his issues. He charmed everyone, and all loved his hair. Trystan has "angel hair" like Charlotte did--it is so white it's nearly transparent, and sticks straight up all over his head, giving him a sort of halo. Char's eventually settled down once it grew long enough. With Trystan we'll have to start cutting it short eventually so that it doesn't look so goofy. It's adorable now.
The reunion was fun. It's always a big potluck, and this year we had a gathering room in hubby's grandmother's church, including use of their gym. There was lots of room for the kids to play, and about 1/2 of Char & Trystan's generation was in attendance (so, over a dozen kids from 3 months to about 12 years old were actually there). My father-in-law is one of 13 siblings, so the family is HUGE. Both of my kids had a blast.
We had a reservation to stay the night in town before driving home, and luckily, our car made it to the hotel before it died. Yep, it died. 200 miles from our home (and from my car) in a small town on a Saturday night, where most mechanics have Sundays off. We didn't discover the problem until after we'd checked in, swam, and were leaving to find dinner. My IL's, SIL and BIL & their twins had decided not to stay the night (the twins don't do well in hotels...my kids don't do well in cars...), so we were on our own. We changed our dinner plans and walked across the street to a closer restaurant.
After dinner, we found that one of my husband's cousin's family, coincidentally, were staying in the room right next to ours. They had car battery trouble too (must be the heat and all the travel accessories), but were able to start their car and then jump ours. Unfortunately, my husband's car battery would not hold a charge, even after an extended period of highway driving. Sunday morning, my husband's uncle jumped his car again, and accompanied him to a local auto parts store to buy a new battery. Their mechanics were not in for the day, but they loaned my husband some tools, and my husband changed his own battery.
Char and Trystan thought that hanging out in a hotel room and watching cartoons was all just part of the trip. Char, especially, was devastated when she found out that we were leaving for home, and not another exciting adventure. Maybe next year, kid, assuming our cars hold out.
Yesterday it was my turn for somewhat unexpected and expensive car repairs. My airconditioning was acting a little flaky last week, and my rear brakes were running fingernails down a chalkboard at every red light. My kids went to daycare as Char had swimming lessons. My husband worked from home to be on call to help me drop off and pick up the car. I took my day-off work and cleaned the house, with my cell phone in hand all day. They didn't get it done till after 5. All that cleaning was necessary, but today I'm wishing I'd spent more time online or watching a little tv or something that didn't involve bleach or toilets.
Now I'm hoping that I'll have less real stuff to talk about for a while, so I can get back to my normal random-thoughts-from-Kristi kind of posts. Like the one about leg hair that I've been considering writing. Maybe I'll schedule that for later this week :)
Wednesday, July 30, 2008
He KNOWS
Trystan is 16 months old, has one kidney, a colon that was initially attached to his bladder (instead of say, an anus), and irregular vertebrae that might signal spinal cord (read: nerve) issues. And on Sunday, twice he requested to pee in the potty and actually did it.
Before that, he had wandered in once while I was assisting his 3.9-year old sister (who is normally independently in charge of her own waste management) with an extra wipe-job, involving an actual baby wipe. Trystan sat down on the stepstool to watch and was exceedingly indignant when he was bodily removed from the room (he's rather destructive in bathrooms). About 5 minutes later, I noticed a certain scent emanating from his rear. He wasn't in the bathroom to watch, to heckle, or to cause trouble. He was IN LINE. Doh! I apologized profusely to him as he lay on his changing table giving me a cold shoulder. Dude, learn some more words, ok?
Impressive what the kid understands. I just hope that this is a good portent for the future of potty training. Maybe he'll be one of the lucky small % with the high imperforate anus defect who can toilet train normally. Or maybe he just had a very good day!
Before that, he had wandered in once while I was assisting his 3.9-year old sister (who is normally independently in charge of her own waste management) with an extra wipe-job, involving an actual baby wipe. Trystan sat down on the stepstool to watch and was exceedingly indignant when he was bodily removed from the room (he's rather destructive in bathrooms). About 5 minutes later, I noticed a certain scent emanating from his rear. He wasn't in the bathroom to watch, to heckle, or to cause trouble. He was IN LINE. Doh! I apologized profusely to him as he lay on his changing table giving me a cold shoulder. Dude, learn some more words, ok?
Impressive what the kid understands. I just hope that this is a good portent for the future of potty training. Maybe he'll be one of the lucky small % with the high imperforate anus defect who can toilet train normally. Or maybe he just had a very good day!
Monday, July 28, 2008
Trystan's MRI
Friday was strange. I woke Trystan up at 4:30 in the morning, fed him a bowl of oatmeal, and put him back to bed. He was scheduled for an MRI to check for a tethered spinal cord at noon, and couldn't have any solid food after 5am. Then, clear liquids only until 9, and then nothing until after the procedure.
Withholding food wasn't as horrific as I feared. I had to keep him playing either upstairs in the bedrooms (he loves doing laundry), or in the basement play area (he loves the bounce house). If we stayed on the main floor, then he would probably have helped himself to a snack from the pantry. He is especially fond of raisins lately, and even carries the box to the kid-sized table to eat it. Did I mention that he's a climber?
He told me a couple of times that he was hungry, but was pacified by, well, a pacifier. And we left around 10:30, so it wasn't that long that he had to wait. The drive to Children's was a little surreal. One of the local radio stations was hosting a charity event and were playing Christmas music all day, and introducing themselves as The Christmas Station. July 25th. Christmas in July. (though why don't we say "Christmas in June", as June is 6 months from Christmas...July is a 7/5 split...makes no sense to me...)
The procedure center at Childrens was running a little behind, and so Trystan played with every toy in their cupboard at least twice. He even got to color with crayons (only a little got on the sheets to the hospital bed, I swear), and helped me to fill out a parent questionaire. (Did you see the yellow zig-zag? That was Trystan answering "No" to the question about metal plates in his head...).
Trystan had to be sedated, and because it is always hard to find his veins, they put him under with gas before attempting to start an IV. At that point, I was handed a pager and sent to the cafeteria to wait. Oddly, enough, the cafeteria was also celebrating Christmas in July, with a menu of roast turkey and mashed potatoes. I had pizza.
It was a little strange pushing around a stroller with no kid in it, but I wasn't the only one. I had a brief conversation with another mom whose son was there to see the surgeons (not Trystans, but one of the others in the same office), and who had been through the MRI for tethered chord. He had a different overall set of issues, but it was nice to share quick anecdotes. Her little boy wasn't expected to walk at all, but three months after getting leg braces walked into their neurologist's office on his own power. Kids are awesome.
Trystan awoke from the sedation very quickly. That is to say, he was sound asleep one moment, and wide awake the next. Wide awake and quickly divesting himself of all extraneous paraphanalia, like the oxygen tube in his nose, the pusle-ox meter on his thumb, and his IV. Luckily they had the IV taped down well, because I know from experience how much those things bleed when you pull them out too fast.
I was given instructions to not allow him to drive or operate heavy machinery, and to make sure he had fluids. He was only a little wobbly on his feet at first, and did not apreciate the fruit-punch flavored pedialyte. It was better in his own sippy cup, but still sub-optimal. He dumped most of it out in the car, in his carseat--his butt was wet and fruity when we got home. We left fairly soon after he woke up. If it were up to Trystan, he would have walked out a lot sooner--he kept trying to escape out the door while I was gathering our stuff up.
We don't have the results yet. Someone will call us, or our pediatrician, "soon". If the department is as timely with following up on test results as they were about scheduling, we might find out by Christmas. It's only 5 months away, after all.
Withholding food wasn't as horrific as I feared. I had to keep him playing either upstairs in the bedrooms (he loves doing laundry), or in the basement play area (he loves the bounce house). If we stayed on the main floor, then he would probably have helped himself to a snack from the pantry. He is especially fond of raisins lately, and even carries the box to the kid-sized table to eat it. Did I mention that he's a climber?
He told me a couple of times that he was hungry, but was pacified by, well, a pacifier. And we left around 10:30, so it wasn't that long that he had to wait. The drive to Children's was a little surreal. One of the local radio stations was hosting a charity event and were playing Christmas music all day, and introducing themselves as The Christmas Station. July 25th. Christmas in July. (though why don't we say "Christmas in June", as June is 6 months from Christmas...July is a 7/5 split...makes no sense to me...)
The procedure center at Childrens was running a little behind, and so Trystan played with every toy in their cupboard at least twice. He even got to color with crayons (only a little got on the sheets to the hospital bed, I swear), and helped me to fill out a parent questionaire. (Did you see the yellow zig-zag? That was Trystan answering "No" to the question about metal plates in his head...).
Trystan had to be sedated, and because it is always hard to find his veins, they put him under with gas before attempting to start an IV. At that point, I was handed a pager and sent to the cafeteria to wait. Oddly, enough, the cafeteria was also celebrating Christmas in July, with a menu of roast turkey and mashed potatoes. I had pizza.
It was a little strange pushing around a stroller with no kid in it, but I wasn't the only one. I had a brief conversation with another mom whose son was there to see the surgeons (not Trystans, but one of the others in the same office), and who had been through the MRI for tethered chord. He had a different overall set of issues, but it was nice to share quick anecdotes. Her little boy wasn't expected to walk at all, but three months after getting leg braces walked into their neurologist's office on his own power. Kids are awesome.
Trystan awoke from the sedation very quickly. That is to say, he was sound asleep one moment, and wide awake the next. Wide awake and quickly divesting himself of all extraneous paraphanalia, like the oxygen tube in his nose, the pusle-ox meter on his thumb, and his IV. Luckily they had the IV taped down well, because I know from experience how much those things bleed when you pull them out too fast.
I was given instructions to not allow him to drive or operate heavy machinery, and to make sure he had fluids. He was only a little wobbly on his feet at first, and did not apreciate the fruit-punch flavored pedialyte. It was better in his own sippy cup, but still sub-optimal. He dumped most of it out in the car, in his carseat--his butt was wet and fruity when we got home. We left fairly soon after he woke up. If it were up to Trystan, he would have walked out a lot sooner--he kept trying to escape out the door while I was gathering our stuff up.
We don't have the results yet. Someone will call us, or our pediatrician, "soon". If the department is as timely with following up on test results as they were about scheduling, we might find out by Christmas. It's only 5 months away, after all.
Monday, May 05, 2008
No go
Friday Trystan was scheduled for an MRI of his lower spine. One of the complications frequently associated with VACTERL is a tethered cord. If you actually follow that link, you can read a list of symptoms. Trystan does not appear to have any of them, at least any that we could look for in a kid his age (every 1year old is incontinent). He has just the barest "dimple" on his tailbone, but that is apparently genetic (ahem). At 13 months, he does not walk unassisted yet, at least not more than 3 or 4 steps before collapsing in giggles, but neither did Charlotte. So, I have high hopes that he will not have a tethered spinal cord. But, it is so terribly common with the imperforate anus and he has known issued with at least one of his lower vertebrae, so it's worth checking.
Trystan has been sick for every one of his surgeries, except the very first (I think germs need more than 24 hours to work). An MRI is not surgery, but he does need to be sedated. Trystan, true to form, developed a cold last week, and like many of his colds, it got down into his chest. Thursday he was sniffling and coughing occaisionally. Friday at 6:30AM when we arrived for his appointment, he was coughing a LOT, and breathing poorly enough that he was given a breathing treatment just in case. The breathing treatment didn't help--he doesn't have asthma, and though he's had to use an inhaler for one illness last fall, they don't help with most of his colds--but he also got no MRI. Anestheisologists don't like sedating people who are having trouble breathing.
So, we're rescheduling. The new date will be sometime probably early June to give his lungs time to rest. In the mean time, he sound 100% better, and slept the entire night last night (8pm-7am) without coughing once. Except for a little crusty snot around his nose this morning, you'd have no idea the kid was sick last week.
Trystan has been sick for every one of his surgeries, except the very first (I think germs need more than 24 hours to work). An MRI is not surgery, but he does need to be sedated. Trystan, true to form, developed a cold last week, and like many of his colds, it got down into his chest. Thursday he was sniffling and coughing occaisionally. Friday at 6:30AM when we arrived for his appointment, he was coughing a LOT, and breathing poorly enough that he was given a breathing treatment just in case. The breathing treatment didn't help--he doesn't have asthma, and though he's had to use an inhaler for one illness last fall, they don't help with most of his colds--but he also got no MRI. Anestheisologists don't like sedating people who are having trouble breathing.
So, we're rescheduling. The new date will be sometime probably early June to give his lungs time to rest. In the mean time, he sound 100% better, and slept the entire night last night (8pm-7am) without coughing once. Except for a little crusty snot around his nose this morning, you'd have no idea the kid was sick last week.
Monday, March 24, 2008
Rebirth and Salvation
Yesterday is the one-year anniversary of the worst day of my life. Yesterday was the day after Trystan's birthday, and was the day that his imperforate anus was discovered, and he was transported away from me to the NICU at Childrens' hospital. I remember asking a nurse about why Trystan hadn't yet passed a meconium, and she was the one who discovered that there was no opening where there ought to be (it wasn't that obvious at first). Within minutes, one of the residents had taken him from my room down to the nursery, and I didn't see him again for probably an hour. I remember being wheeled in a chair, myself only 24 hours out of surgery, barely able to sit myself up, down to the nursery where the transport team was waiting already. Trystan had an IV, and a pacifier, and he wanted me to nurse him. And I couldn't. I probably cried the entire time I held him before he was driven away. I wouldn't see or hold him again for over 24 hours, after his first surgery.
My mom, a 20+ year NICU nurse who had done patient transports herself, and my husband went with Trystan, leaving me with my baby sister (now 11, not so much a baby!) at Missouri Baptist. It was my mom's birthday. My mother-in-law brought Charlotte later that afternoon. I don't know what those girls really thought and felt, keeping company with me and my postpartum hormone avalanche, empty womb and arms. I had to explain to my 2.5 year old daughter when she immediately asked, "Where baby brother?". They were wonderful and I don't know that they will ever really understand just how helpful it was to have their company, their smiles and hugs, and even the (now funny) point where Charlotte pulled the emergency cord in the bathroom, bringining a dozen nurses running to my room.
After a while, my in-laws then took both girls back to my house, leaving me with a book, the tv, and a breastpump for company overnight. And they were all very poor company. I took some small comfort in the familiarity with the breastpump, having spent many hours with one pumping for Charlotte. But even knowing the ropes, and having the pressure of the incoming milk supply eased, I could not help but feel so completely horrified about how all of the milk my little baby had so enthusiastially eaten since birth could actually be killing him even as I sat and made him more.
I think I cried more than I slept that night, counting the hours until I was discharged, and until my inlaws arrived to drive me accross town for Trystan's surgery. I don't think I was really ok again until I held Trystan after his surgery.
Yesterday was Trystan's first Easter Mass but not his first Easter. When I joined the Catholic Church some 7 years ago now, I attended every holy week service--from the foot washing on Holy Thursday, the silent, hungry desolation of Good Friday, to the cleansing baptisms of Easter Vigil and the jubilation of Easter Sunday. I don't remember last year's service at all, I only remember leaving the church and driving across Forest Park to pick up my baby and bring him home. I don't think my faith in the resurrection had ever been stronger than it was sitting at home that night, munching jelly beans with Charlotte and settling Trystan to sleep in the cradle next to our bed.
My mom, a 20+ year NICU nurse who had done patient transports herself, and my husband went with Trystan, leaving me with my baby sister (now 11, not so much a baby!) at Missouri Baptist. It was my mom's birthday. My mother-in-law brought Charlotte later that afternoon. I don't know what those girls really thought and felt, keeping company with me and my postpartum hormone avalanche, empty womb and arms. I had to explain to my 2.5 year old daughter when she immediately asked, "Where baby brother?". They were wonderful and I don't know that they will ever really understand just how helpful it was to have their company, their smiles and hugs, and even the (now funny) point where Charlotte pulled the emergency cord in the bathroom, bringining a dozen nurses running to my room.
After a while, my in-laws then took both girls back to my house, leaving me with a book, the tv, and a breastpump for company overnight. And they were all very poor company. I took some small comfort in the familiarity with the breastpump, having spent many hours with one pumping for Charlotte. But even knowing the ropes, and having the pressure of the incoming milk supply eased, I could not help but feel so completely horrified about how all of the milk my little baby had so enthusiastially eaten since birth could actually be killing him even as I sat and made him more.
I think I cried more than I slept that night, counting the hours until I was discharged, and until my inlaws arrived to drive me accross town for Trystan's surgery. I don't think I was really ok again until I held Trystan after his surgery.
Yesterday was Trystan's first Easter Mass but not his first Easter. When I joined the Catholic Church some 7 years ago now, I attended every holy week service--from the foot washing on Holy Thursday, the silent, hungry desolation of Good Friday, to the cleansing baptisms of Easter Vigil and the jubilation of Easter Sunday. I don't remember last year's service at all, I only remember leaving the church and driving across Forest Park to pick up my baby and bring him home. I don't think my faith in the resurrection had ever been stronger than it was sitting at home that night, munching jelly beans with Charlotte and settling Trystan to sleep in the cradle next to our bed.
Monday, January 21, 2008
Addition and Subtraction
Trystan is feeling much better. His throwing up last week was attributed to an excess of snot, upsetting his tummy, with a small dose of carsickness to boot. It's wonderful to realize that he is sometimes just sick, just like any other child. I'm afraid, though, that it will still be a while before a large spitup or a full-scale puking episode doesn't make me panic and start counting poopy diapers, examining his belly for swelling, and listening intently for any sign of his passing gas.
This weekend, we figured out that Trystan's cold and stomach upset had another, complicating factor that had not anticipated. Some of his nausea was probably caused by or aided by excessive drool from teething. Charlotte was 13 or 14 months before she cut her first tooth, as was I. My mother-in-law couldn't remember my husband's exact age, but she remembered him being later as well. Trystan has decided to shun tradition by beginning at the tender age of 10 months. Also, unlike his sister who got her top two teeth first, he is starting with one on top and one on bottom, both at the same time.
Friday, Trystan had a visit to a urologist for a follow up on the state of his kidneys. At birth, we were told that he had one larger kidney, and one much smaller kidney, but after a variety of tests in teh NICU, that they seemed to be functioning fine. They still are, apparently. Well, one still is. His larger kidney is basically his only functioning one, the smaller one is continuing to get smaller (or perhaps just now grow). Luckily, people can live quite healthy lives with a single functioning kidney, and Trystan has not had any evidence of urninary tract or kidney infections so far. We were given a full pardon from the urologist--we do not need any routine follow ups with him. Hooray!
Tomorrow, we have Trystan's post-op follow up with his surgeon. I am not sure, but I am hoping that we may get a similar decision from him. I am not aware of any more information that they need to give us, instructions that we haven't already heard, or more follow up that Trysan would need. It would be lovely to cut down the number of doctors on our contact list to two--the pediatrician and the cardiologist.
This weekend, we figured out that Trystan's cold and stomach upset had another, complicating factor that had not anticipated. Some of his nausea was probably caused by or aided by excessive drool from teething. Charlotte was 13 or 14 months before she cut her first tooth, as was I. My mother-in-law couldn't remember my husband's exact age, but she remembered him being later as well. Trystan has decided to shun tradition by beginning at the tender age of 10 months. Also, unlike his sister who got her top two teeth first, he is starting with one on top and one on bottom, both at the same time.
Friday, Trystan had a visit to a urologist for a follow up on the state of his kidneys. At birth, we were told that he had one larger kidney, and one much smaller kidney, but after a variety of tests in teh NICU, that they seemed to be functioning fine. They still are, apparently. Well, one still is. His larger kidney is basically his only functioning one, the smaller one is continuing to get smaller (or perhaps just now grow). Luckily, people can live quite healthy lives with a single functioning kidney, and Trystan has not had any evidence of urninary tract or kidney infections so far. We were given a full pardon from the urologist--we do not need any routine follow ups with him. Hooray!
Tomorrow, we have Trystan's post-op follow up with his surgeon. I am not sure, but I am hoping that we may get a similar decision from him. I am not aware of any more information that they need to give us, instructions that we haven't already heard, or more follow up that Trysan would need. It would be lovely to cut down the number of doctors on our contact list to two--the pediatrician and the cardiologist.
Wednesday, January 16, 2008
Be careful what you wish for
Yesterday I was tired and grumpy, and wishing for a day off. I didn't sleep well the night before, having had too much caffeine before bed and waking up with a hungry baby overnight. Work was kind of boring--I had lots of small tasks and none of them were particularly interesting or challenging. Tuesdays Charlotte has dance class at 5:30 in the evening, and neither the time nor the day are convenient. My husband plays in a a wallyball league at that time, so it falls to me to pick the kids up from daycare, get Charlotte dressed, get her a snack, and be ready to dance at 5:30. That's a stretch for me, as I have to leave work by 4:30, which means I have to be in and ready to work by 8 or 8:30, assuming I plan to eat lunch at my desk, earlier if I don't (yeah, right, like I ever go out to lunch...). That doesn't sound so early, except that I'm already up as early as I can drag myself out of bed in the morning (around 6:30), and after showering, feeding the baby, getting kids dressed (with help, but still), packing bags, I usually have to pack my breakfast and eat that at my desk at work also, and I'm still lucky to leave the house by 8am.
Today, I'm getting my day off. To be exact, I am not at work and I am not home with two kids. I am home with one kid, who is sick. Trystan woke up coughing this morning, and coughed so hard he was gagging. He then threw up his breastmilk the first two times I attempted to let him nurse, and threw up several more times in between coughing. He has been constipated, which is a really bad thing for a kid with his medical history, and so I was planning to call a pediatrician this morning to ask about baby-safe laxatives or stool softeners anyway. The throwing up is worrisome with his history of bowel obstruction, so I've called both my pediatrician and the surgeon's office for direction on where I'm taking him today.
A little before 9, Trystan demanded to nurse again, so I gritted my teeth and let him, bracing for the spew. Much to my surprise, he has kept it down so far (a whole 30 minutes), and is sleeping. He has an 11am appointment with the ped, and I'm watching TV, blogging, and doing laundry. Blech.
Today, I'm getting my day off. To be exact, I am not at work and I am not home with two kids. I am home with one kid, who is sick. Trystan woke up coughing this morning, and coughed so hard he was gagging. He then threw up his breastmilk the first two times I attempted to let him nurse, and threw up several more times in between coughing. He has been constipated, which is a really bad thing for a kid with his medical history, and so I was planning to call a pediatrician this morning to ask about baby-safe laxatives or stool softeners anyway. The throwing up is worrisome with his history of bowel obstruction, so I've called both my pediatrician and the surgeon's office for direction on where I'm taking him today.
A little before 9, Trystan demanded to nurse again, so I gritted my teeth and let him, bracing for the spew. Much to my surprise, he has kept it down so far (a whole 30 minutes), and is sleeping. He has an 11am appointment with the ped, and I'm watching TV, blogging, and doing laundry. Blech.
Tuesday, December 04, 2007
Home
Trystan is home. He was discharged yesterday afternoon, which is about the earliest that we had expected that he could be sent home. His surgery Friday was (so far as we know) without complications, and even immediately afterwards, the nurses reported hearing good bowel sounds.
Anytime the intestines are operated on, or even moved around while other body parts are operated on, there is a chance that peristalsis, the coordinated action of the intestines, can get out of synch. So, instead of moving contents steadily downwards, parts can get messed up and try to force the contents back upwards. Trystan had blessedly little or no trouble with that this time. After his colostomy at 2 days old, it was over a week before the doctors deemed he was safe to try eating, and it took an extra day or two beyond that before he would eat without puking everything back up.
This time, he started passing gas and pooping at about 30 hours post-op. I was holding him Saturday night, with my hand lightly patting his bottom when I felt(and heard) the first toot. My husband and I were both giddy--you have never seen two parents so excited about an 8-month old soiling his diaper. I was even disappointed that we didn't have a camera, and joked that my husband could take a photo of the dirty diaper with his phone. We didn't, actually. But he continued to pass gas and stool all night (where he got some of that I have no idea, digestive juices mainly I guess since he'd been completely cleaned out before hand). Sunday was rough, as he was hungry, and the doctors still wanted his bowels to rest. So he was allowed 1/2 ounce of breastmilk every 4 hours until first thing Monday morning. The poor little guy did not want to let me (the food supply) out of his sight. Yesterday morning, he was given the green light to eat as much as he wants, and by about noon, we were told we could pack up to go home.
We're all exhausted around here, except for Charlotte who's stressed and dealing with it as any 3-year old does: by throwing tantrums every couple of minutes. Trystan slept in our bed last night--on top of me most of the night. Saturday and Sunday he did the same thing at the hospital and would not let me put him down to sleep. My back is still recovering from that. My husband had duty Thursday night and Friday night, which weren't any better.
So, now we get to deal with the aftermath. We're going to need more diapers, as he has a raging case of diarrhea (completely anticipated), and we must keep on top of the dirty diapers lest he develop diaper rash. Many kids really struggle with the rash between the new experience of having poop on their skin, consistency issues because the colon is not really doing its job well yet, frequency, and all the antibiotics around the surgery. Our laundry is about hip-deep in all bedrooms--much of it clean and needing to be sorted and folded and put away. Our pantry is mostly empty.
Did I mention Trystan's newest trick? Somehow during his hospital stay while he was physically attached to me or my husband the entire time (and basically resting), the kid learned how to crawl, and can suddenly pull up to kneeling. Maybe it just took a sore belly to convince him to try holding his weight on his knees instead of squirming on his tummy. Amazing.
Anytime the intestines are operated on, or even moved around while other body parts are operated on, there is a chance that peristalsis, the coordinated action of the intestines, can get out of synch. So, instead of moving contents steadily downwards, parts can get messed up and try to force the contents back upwards. Trystan had blessedly little or no trouble with that this time. After his colostomy at 2 days old, it was over a week before the doctors deemed he was safe to try eating, and it took an extra day or two beyond that before he would eat without puking everything back up.
This time, he started passing gas and pooping at about 30 hours post-op. I was holding him Saturday night, with my hand lightly patting his bottom when I felt(and heard) the first toot. My husband and I were both giddy--you have never seen two parents so excited about an 8-month old soiling his diaper. I was even disappointed that we didn't have a camera, and joked that my husband could take a photo of the dirty diaper with his phone. We didn't, actually. But he continued to pass gas and stool all night (where he got some of that I have no idea, digestive juices mainly I guess since he'd been completely cleaned out before hand). Sunday was rough, as he was hungry, and the doctors still wanted his bowels to rest. So he was allowed 1/2 ounce of breastmilk every 4 hours until first thing Monday morning. The poor little guy did not want to let me (the food supply) out of his sight. Yesterday morning, he was given the green light to eat as much as he wants, and by about noon, we were told we could pack up to go home.
We're all exhausted around here, except for Charlotte who's stressed and dealing with it as any 3-year old does: by throwing tantrums every couple of minutes. Trystan slept in our bed last night--on top of me most of the night. Saturday and Sunday he did the same thing at the hospital and would not let me put him down to sleep. My back is still recovering from that. My husband had duty Thursday night and Friday night, which weren't any better.
So, now we get to deal with the aftermath. We're going to need more diapers, as he has a raging case of diarrhea (completely anticipated), and we must keep on top of the dirty diapers lest he develop diaper rash. Many kids really struggle with the rash between the new experience of having poop on their skin, consistency issues because the colon is not really doing its job well yet, frequency, and all the antibiotics around the surgery. Our laundry is about hip-deep in all bedrooms--much of it clean and needing to be sorted and folded and put away. Our pantry is mostly empty.
Did I mention Trystan's newest trick? Somehow during his hospital stay while he was physically attached to me or my husband the entire time (and basically resting), the kid learned how to crawl, and can suddenly pull up to kneeling. Maybe it just took a sore belly to convince him to try holding his weight on his knees instead of squirming on his tummy. Amazing.
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