As I rocked William to sleep this afternoon, I realized we've hit somewhat of a milestone, at least one in our book. Its been nearly 2 1/2 months since William has been hospitalized or even visited the ER for that matter. We've enjoyed relatively good health for the past 2 months, ever since William cleared his central line infection in mid-June. When I think about it, we've had very few doctor's appointments, no major threats or alarms, only about a month of obscure symptoms including being very cranky, clingy and excessively pale. William has had weekly bloodwork to check for anything obvious that could possibly attribute to these symptoms, but nothing has shown up. Good news, I know.
We've also thoroughly enjoyed a summer filled with Grammy's company on Tuesdays and Thursdays (and sometimes even an extra afternoon or two). This has enabled us to attempt many more fun activities out of the house, given me the opportunity to run errands and be out without kiddos in tow, taken off the burden of finding childcare for Nicholas when William has appointments and above all else, has provided me a tremendous amount of support from a Grammy who so desperately wants to take all my problems away, at least for a couple days of the week.
As much as this is a huge accomplishment considering what we have been through, I have to admit, it is still rather tough to get through the days here. Its like we're in this limbo state of 'we've beaten cancer....now what...how do you move on with all this baggage we still have going on?' Not only it is tough to know how to emotionally move forward, things are still exceptionally busy and all-encompassing to meet William's daily needs.
A big component is the fact that William is yet to sleep through the night. He never met that milestone of self-soothing. This means our dear William is rocked to sleep every time he goes to sleep...at bedtime and for all naps. A lot of this has to deal with the fact that ever since he was 9 months old, he's been attached to an IV line every night. This provides tremendous fear for us to have him awake, upset and unsupervised with this line accessed. Let's face it, if William pulls on his line, if it gets wrapped around the end of his crib or a blanket it could mean a major problem. This line is attached to his superior vena cava leading directly to his heart - he could literally bleed to death within minutes if this line gets pulled out. A little scary, hun?
William wakes once or twice a night, other nights 3-4 times...guaranteed. In addition to him waking up crying, there's many times a week that his IV pump alarms...making an obnoxious beeping noise until it is attended to. This happens if William occludes the tubing in some fashion or if there is air in the line. Some nights it seems like you have everything in its proper place and the darn thing still alarms multiple times. Then there's the nights, like last night, William woke an hour after being put down and then again at 3am. Apparently, he thought he had slept enough by then and was ready to be up....yes, up at 3am. After an hour of rocking and singing to him, he settled down but stirred at every attempt to ever-so gently place him back in his crib. By 4:15am and four attempts at putting him down, I was feeling it. I tried to bring him (and his IV pump backpack) into the guest room to at least get to be horizontal for a little. William wanted nothing to do with that choice plan. A few minutes later we were back to our glider chair in his bedroom. Thankfully, William ended up falling asleep as long as he was laying on me... and so we slept until 6:45am, in the chair.
Once awake, the roller coaster of a day begins.
William has to be de-undergarmented: taking off his fully-saturated size 7 overnight diaper with 2 soaked Depends Boost inserts inside. The thing weights a couple pounds, at least.
Despite our best efforts for leak-proofing, every morning William is wet through to some degree. He gets a mini bath with baby wipes, a full change of clothes and nearly always a new set of linens for his crib.
By 7:15am, his 12-run of TPN is complete. That line gets flushed with saline and heparin-locked...all maintaining a sterile field when doing this attached to a short line on an active 14 month old. The opposite lumen of his central line needs to be sterilized, flushes and started for William's 4-hours of hydration and half hour of penicillin infusion. Gotta have another sterile field, too!
From there, our days are filled with changing William's many, many poopy diapers a day (which are especially eventful in the mornings, often three by 10am, usually requiring a full change of clothing once a day). All morning, its a dancing game of backpack on... backpack off. Backpack on while I shower and get ready for the day, backpack off to get in the highchair for a little oral play with frozen teethers (and an often failed attempt at trying to have William accept something, anything, by mouth). The entire 4 hours William has his pack on, you have to keep a close eye on him to ensure his lines are not getting tugged out, wrapped around his foot, a knee or a toy for that matter.
With William's latest endeavor of learning to walk there are many crashes, bumps and times he needs comforting throughout the average day. He also has a major obsession with the stairs....oh, the stairs. Hence the gate...which causes the tantrums at the gate!
By noon, William's hydration infusion is complete and needs to be sterilized, flushed and hep-locked. William continues to struggle with consistent napping. On average, he takes one 1-1 1/2 hour nap mid-day (usually between noon and 2pm). I try to coordinate Nicholas' lunchtime with when I will put William down for a nap. Nicholas eats lunch while enjoying an episode of Wonder Pets, all while I countdown my minutes to rock William and hopefully place him uninterrupted and comfortably in his crib. It's a far cry of how I'd expect to spend lunchtime with my two boys - but it seems to be the only way for us to meet everyone's needs at this point.
Thankfully, Nicholas still naps most days. A day is considered a big success when I have maybe 20 minutes to a half hour when both kids are napping. Once William is awake, I have him to entertain and keep safe while I'm a madwoman working on regular household upkeep, documenting William's medical needs and all contact with providers, making phone calls regarding insurance issues, doctor's appointment, emailing/faxing doctors, etc, etc, etc. Everyday there is a things to do list...and everyday, it remains unfinished.
By dinnertime, William is exhausted. We have a tough time just making it through dinner without a major meltdown. Most nights, the extreme fussiness begins around 5:30pm. Dinner is considered a success if William can be kept content in his highchair for half the meal - the latter half is nearly always spent on my lap. From there, its a rush to prepare his TPN and hydration pack for the following day (takes about a half hour), get him accessed to start the TPN infusion (oh, that lovely sterile field again, only this time on a cranky, over-tired wiggle worm), fully undergarmented, PJ'ed and once again, rocked to sleep.
Back downstairs, Nicholas needs to be attended to and on to the battle of bedtime.
Just because we have all this stuff going on with William does not make us immune to the challenges of life with a 3-year old. Sure, we have those days when big brother decides he doesn't really want the Kix cereal he chose, so he decides, like any 3-year-old would, to toss his bowl on the floor (except this one was glass, so it shattered all over the floor). We also have those days that are mixed with battles over turning off the tv, when to use the toilet, staying out of the garage, arguing over cleaning up one's toys, the random shove to little brother or grabbing away a toy, uncooperating with whatever...oh, and the worst of all, the naptime battle. Oh, and if anyone knows Nicholas, they know the kid NEVER STOPS TALKING and moving! He loves attention and is always yapping about something!
Over everything else, the juggling of daily management issues, the impact of our recent life changes on Nicholas and our family, the awkwardness of being out in public and people noticing William's central line, my personal exhaustion....on and on, I have to say it is most difficult to see William and not be able to make things better for him. As a mother, you naturally want to take away the pains, struggles, worries and just make things better for your babies. I want William to move past this, to just be free to be a baby....to play without a heavy tote on his back, to want to eat with us as a family, to sleep freely and comfortably and to no longer have to be poked, prodded and invaded by doctor after doctor.
I look forward to the day that things are different.
The day I will read this entry and remember how it once was...as a distant past.
As I approach turning 34 tomorrow, I can only wish to have a year that bring peace to my family, myself and my dear, sweet William.
~
And so, to end on a lighter note...
I have a little trick I use with William for those days when, well... you just need a few tricks up your sleeve to get through the afternoon. I give him our biggest pot with about an inch of water in it, a few kitchen utensils and let him splash away. Well this week, a little splashing was not enough for "The Bruit" -
he went in all the way!
He was so content squeezed (and I mean squeezed) in there, clapped his hands when I asked him what he was doing...and oh so proud of himself.
We've also thoroughly enjoyed a summer filled with Grammy's company on Tuesdays and Thursdays (and sometimes even an extra afternoon or two). This has enabled us to attempt many more fun activities out of the house, given me the opportunity to run errands and be out without kiddos in tow, taken off the burden of finding childcare for Nicholas when William has appointments and above all else, has provided me a tremendous amount of support from a Grammy who so desperately wants to take all my problems away, at least for a couple days of the week.
As much as this is a huge accomplishment considering what we have been through, I have to admit, it is still rather tough to get through the days here. Its like we're in this limbo state of 'we've beaten cancer....now what...how do you move on with all this baggage we still have going on?' Not only it is tough to know how to emotionally move forward, things are still exceptionally busy and all-encompassing to meet William's daily needs.
A big component is the fact that William is yet to sleep through the night. He never met that milestone of self-soothing. This means our dear William is rocked to sleep every time he goes to sleep...at bedtime and for all naps. A lot of this has to deal with the fact that ever since he was 9 months old, he's been attached to an IV line every night. This provides tremendous fear for us to have him awake, upset and unsupervised with this line accessed. Let's face it, if William pulls on his line, if it gets wrapped around the end of his crib or a blanket it could mean a major problem. This line is attached to his superior vena cava leading directly to his heart - he could literally bleed to death within minutes if this line gets pulled out. A little scary, hun?
William wakes once or twice a night, other nights 3-4 times...guaranteed. In addition to him waking up crying, there's many times a week that his IV pump alarms...making an obnoxious beeping noise until it is attended to. This happens if William occludes the tubing in some fashion or if there is air in the line. Some nights it seems like you have everything in its proper place and the darn thing still alarms multiple times. Then there's the nights, like last night, William woke an hour after being put down and then again at 3am. Apparently, he thought he had slept enough by then and was ready to be up....yes, up at 3am. After an hour of rocking and singing to him, he settled down but stirred at every attempt to ever-so gently place him back in his crib. By 4:15am and four attempts at putting him down, I was feeling it. I tried to bring him (and his IV pump backpack) into the guest room to at least get to be horizontal for a little. William wanted nothing to do with that choice plan. A few minutes later we were back to our glider chair in his bedroom. Thankfully, William ended up falling asleep as long as he was laying on me... and so we slept until 6:45am, in the chair.
Once awake, the roller coaster of a day begins.
William has to be de-undergarmented: taking off his fully-saturated size 7 overnight diaper with 2 soaked Depends Boost inserts inside. The thing weights a couple pounds, at least.
Despite our best efforts for leak-proofing, every morning William is wet through to some degree. He gets a mini bath with baby wipes, a full change of clothes and nearly always a new set of linens for his crib.
By 7:15am, his 12-run of TPN is complete. That line gets flushed with saline and heparin-locked...all maintaining a sterile field when doing this attached to a short line on an active 14 month old. The opposite lumen of his central line needs to be sterilized, flushes and started for William's 4-hours of hydration and half hour of penicillin infusion. Gotta have another sterile field, too!
From there, our days are filled with changing William's many, many poopy diapers a day (which are especially eventful in the mornings, often three by 10am, usually requiring a full change of clothing once a day). All morning, its a dancing game of backpack on... backpack off. Backpack on while I shower and get ready for the day, backpack off to get in the highchair for a little oral play with frozen teethers (and an often failed attempt at trying to have William accept something, anything, by mouth). The entire 4 hours William has his pack on, you have to keep a close eye on him to ensure his lines are not getting tugged out, wrapped around his foot, a knee or a toy for that matter.
With William's latest endeavor of learning to walk there are many crashes, bumps and times he needs comforting throughout the average day. He also has a major obsession with the stairs....oh, the stairs. Hence the gate...which causes the tantrums at the gate!
By noon, William's hydration infusion is complete and needs to be sterilized, flushed and hep-locked. William continues to struggle with consistent napping. On average, he takes one 1-1 1/2 hour nap mid-day (usually between noon and 2pm). I try to coordinate Nicholas' lunchtime with when I will put William down for a nap. Nicholas eats lunch while enjoying an episode of Wonder Pets, all while I countdown my minutes to rock William and hopefully place him uninterrupted and comfortably in his crib. It's a far cry of how I'd expect to spend lunchtime with my two boys - but it seems to be the only way for us to meet everyone's needs at this point.
Thankfully, Nicholas still naps most days. A day is considered a big success when I have maybe 20 minutes to a half hour when both kids are napping. Once William is awake, I have him to entertain and keep safe while I'm a madwoman working on regular household upkeep, documenting William's medical needs and all contact with providers, making phone calls regarding insurance issues, doctor's appointment, emailing/faxing doctors, etc, etc, etc. Everyday there is a things to do list...and everyday, it remains unfinished.
By dinnertime, William is exhausted. We have a tough time just making it through dinner without a major meltdown. Most nights, the extreme fussiness begins around 5:30pm. Dinner is considered a success if William can be kept content in his highchair for half the meal - the latter half is nearly always spent on my lap. From there, its a rush to prepare his TPN and hydration pack for the following day (takes about a half hour), get him accessed to start the TPN infusion (oh, that lovely sterile field again, only this time on a cranky, over-tired wiggle worm), fully undergarmented, PJ'ed and once again, rocked to sleep.
Back downstairs, Nicholas needs to be attended to and on to the battle of bedtime.
Just because we have all this stuff going on with William does not make us immune to the challenges of life with a 3-year old. Sure, we have those days when big brother decides he doesn't really want the Kix cereal he chose, so he decides, like any 3-year-old would, to toss his bowl on the floor (except this one was glass, so it shattered all over the floor). We also have those days that are mixed with battles over turning off the tv, when to use the toilet, staying out of the garage, arguing over cleaning up one's toys, the random shove to little brother or grabbing away a toy, uncooperating with whatever...oh, and the worst of all, the naptime battle. Oh, and if anyone knows Nicholas, they know the kid NEVER STOPS TALKING and moving! He loves attention and is always yapping about something!
Over everything else, the juggling of daily management issues, the impact of our recent life changes on Nicholas and our family, the awkwardness of being out in public and people noticing William's central line, my personal exhaustion....on and on, I have to say it is most difficult to see William and not be able to make things better for him. As a mother, you naturally want to take away the pains, struggles, worries and just make things better for your babies. I want William to move past this, to just be free to be a baby....to play without a heavy tote on his back, to want to eat with us as a family, to sleep freely and comfortably and to no longer have to be poked, prodded and invaded by doctor after doctor.
I look forward to the day that things are different.
The day I will read this entry and remember how it once was...as a distant past.
As I approach turning 34 tomorrow, I can only wish to have a year that bring peace to my family, myself and my dear, sweet William.
~
And so, to end on a lighter note...
I have a little trick I use with William for those days when, well... you just need a few tricks up your sleeve to get through the afternoon. I give him our biggest pot with about an inch of water in it, a few kitchen utensils and let him splash away. Well this week, a little splashing was not enough for "The Bruit" -
he went in all the way!
He was so content squeezed (and I mean squeezed) in there, clapped his hands when I asked him what he was doing...and oh so proud of himself.
2 comments:
Oh sweet Kristie, how I admire your strength, but really, you're doing what any GOOD Mom would do. Your boys are both so lucky to have you.
I KNOW that many people say that they wish that they could do something, anything to help, and I'm going to say that as well. If something comes up that I can possibly help with, please let me know. I know my feeling of helplessness in this situation is nothing compared to yours.
I do hope that you have a Happy Birthday, but I hope more than anything that you get the wish that I'm pretty sure you'll be wishing for when you blow our your candles.
Much love and admiration coming from this mom... :)
~Marian (who can't seem to remember my blogger password. :P)
Kristie - It has been so long since I have seen you and your precious family but it definitely doesnt mean I am not thinking of you..
Your boys are so lucky to have such a wonderful mom.. reading this post it makes me realize my day is a breeze in comparison..
Take care of yourself and your family.. Have a wonderful birthday..
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