Monday, October 23, 2017
Weary
I'm tired.
I'm not always happy.
I've gained weight.
I've become weak.
I don't exercise enough.
I don't cook healthy meals every night.
I can't do this alone.
Let's start with I'm tired. The average amount of sleep I get per night is 3-4 hours. It never fails that after almost exactly 2 hours of sleep, I wake up. Doesn't matter how tired I am. Doesn't matter what time I woke up that morning or what time I went to bed that night. It doesn't matter what I've eaten of drank. Every gosh darn night. I'm awake. I've tried everything except prescription medication. It doesn't work. My mind is my enemy in the middle of the night.
But despite being tired, I'm still functioning. I'm still making it through my days. And I'm accomplishing daily tasks and making it to work. I am TRYING to sleep at night. It doesn't work. But I'm still trying. And at the end of the day, I do know there are prescription medications that could help me. I am not at the end of my options. I have just chosen to not go that route at this time. I'm just blessed to be able to open my eyes everyday and be alive.
I'm not always happy. I fake it a lot. I put a smile on for the kids, for friends, for family. But sometimes I cry. For hours. This life I live sometimes makes me sad. Sometimes it makes me angry. Sometimes I could scream from the roof tops that I'm done with it. Happiness isn't always a choice for me. Sometimes my sadness & anxiety takes over and I stay on the couch for numerous hours to drown it.
And while I'm not ALWAYS happy, I am happy. My kids bring my joy. Their smiles are so special to me. My anxiety is getting a little better. I finally admitted to myself that I needed help. And it's helping. I love my life even though it's hard and sad at times.
I've gained weight. I lost 30 pounds more than a year ago. But I gained back 20 of those pounds. My clothes don't fit me like they did. I eat when I'm sad. I eat when I'm stressed. I eat too late at night. I eat cookie dough for breakfast. I love food and trying new recipes when I'm in the mood. Taking selfies to promote my Younique business KILLS me because I can see the weight gain in my face. It takes about 50 tries before I find one that I'll actually use and even then, I cringe when I post it.
And while I know I've gained weight, I will tackle it again. It might not be today or tomorrow. But it will be a priority again to me one day. I am blessed to have food for myself, and my family. I love to enjoy food. And even though my confidence is shaken and posting pictures of myself is terribly hard, I still do it. It helps my business and it helps my confidence when I do get those craved notifications on my social media accounts that someone has liked or commented on it. It's not about narcissism, it's about confidence. Like other's selfies. It's not about attention, it's about letting them know they are beautiful and brave to post those.
I've become weak. I'm getting older. I'm falling and bruise easily. I definitely feel like my body is much weaker than it was 10 years ago. Lifting David is a huge burden. I'm terrified of bones breaking because it would hinder my care for him. I can't even give him a proper bath anymore, because I just don't have it in me.
My body is weaker. But I think some days I can be Wonder Woman. I do things that I never imagined I would be able to. I lift a lot. And while I feel as if lifting David has left me weaker over the years, the fact is that David is much older than he once was, as well as much larger. Lifting him will never be easy again. But I will continue to lift and care for him daily for as long as I absolutely can. And while my body is weaker, my will is stronger.
I don't exercise enough. I have little motivation lately. I was running/walking regularly and attending weekly group workouts a year ago. But I'm not now.
But I will. When I do find motivation, I have been walking. Or pushing out 20 pushups or 50 situps. It's a start. I just have to keep at it. Hopefully Kyle will inspire me a little more soon.
I don't cook healthy meals every night. Sometimes we eat pizza. Sometimes we eat candy. Sometimes we eat comfort food. Sometimes we scrounge around the refrigerator and it's every man for himself. I take pictures of yummy desserts when we're out and post them on social media to make others jealous. ;)
Nope not always healthy. But not always unhealthy either. I'm finding a balance in cooking lately. We've had 2 very healthy meals recently and tonight is more of a fall comfort food we'll be trying. It's ok and I refuse to feel guilty about what my family may or may not eat. They are fed and we are all healthy.
I can't do this alone. Sometimes I'm lonely. This can be a very isolating world. Watching activities on social media is tough some days.
And I do not do this alone. Michael helps. My family helps. And my friends are wonderful. I have friends who check on me every single morning and that helps my loneliness be lifted. No one could do this alone. I have recently been asking for a little help. And finding that people are actually WILLING to help. I wish I had asked sooner. I wish I knew the kindness of people.
But now I do.
We're all weary at times. But we can all overcome and persevere.
Monday, September 18, 2017
Dreams
Today was David's annual IEP meeting as well as his 3 year eligibility meeting for special education. We've been through 15 IEP meetings for him as of today. There are many people involved in his care at school. It includes teachers, therapists, social workers, and other representatives from both districts (we live in one school district, but David goes to school in a neighboring district). It's a full house.
I don't get too nervous about these meetings anymore. David's needs are being met very well at school. They take very good care of him & I fully trust them to be with him all day, every day. When he's in a good mood, he's described as a "social butterfly". When he's cranky, he's described as "self-injurious" or "cranky-ass" (maybe that last one is only at home-but it would be an accurate measure of demeanor if they DID use that at school some days.) But all in all, I feel 100% confident about the care he receives while he's away from me. They love him. Plain & simple.
But he is going to be 18 soon. In 5 months. That complicates so much. He'll be able to attend high school until he's 21. But 18 is the magic age when he becomes an "adult". We have to go through the process of legal guardianship, trying to get him Medicare and/or Medicaid, finding new doctors to meet his needs since he won't be in the pediatric realm anymore. It's all so much.
I hate it. But I'd do it all over and over again for him. Because it means he's still here. David's life expectancy is "a couple of decades, possibly a little longer". According to several doctors. I know I've said it on here before. But that kind of stuff is HARD to hear at yearly appointments. Especially because we DID almost lose him 9 months ago. I thought I knew him well enough to detect when he's coming down with something. I have almost always been able to catch things before they become out of our control. There's usually some warning signs. But there was NO sign in January. He was fine when he went to bed, and septic and in kidney failure when I went to wake him up the next morning.
And I know I'm not ready. Someone once told me that I should prepare myself for what's probably inevitable. Because it's easier than being hit with tragedy suddenly. And while I totally understand that thought, I don't believe you can prepare. Either way sucks. Is thinking about something that's completely unknown healthier than being hit suddenly with something unexpected? Because I do think about it. Every. Single. Damn. Day. I have anxiety about it. I don't sleep. My mind is always "preparing" for the expected, but the unknown. I'm having anxiety about how my younger child might react to the inevitable when it happens--he got diagnosed with anxiety after the hospitalization in January. I worry about my husband's reaction. He holds it together, but he does it for mine & Kyle's sanity.
And it's so unfair.
But it's also our life. Unfair & messy. Anxious & nervous. Raw & real.
But having a David-filled life is also amazing. He equals love & hugs. Happiness & laughter. Hopes & dreams.
I don't know what our future holds. But I'm going to hold on tight. And when my "couple of decades, possibly a little longer" happens......I will do my best to fill my dreams with my memories. Because good & bad.....I'm making as many of them as I can.
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
I don't get too nervous about these meetings anymore. David's needs are being met very well at school. They take very good care of him & I fully trust them to be with him all day, every day. When he's in a good mood, he's described as a "social butterfly". When he's cranky, he's described as "self-injurious" or "cranky-ass" (maybe that last one is only at home-but it would be an accurate measure of demeanor if they DID use that at school some days.) But all in all, I feel 100% confident about the care he receives while he's away from me. They love him. Plain & simple.
But he is going to be 18 soon. In 5 months. That complicates so much. He'll be able to attend high school until he's 21. But 18 is the magic age when he becomes an "adult". We have to go through the process of legal guardianship, trying to get him Medicare and/or Medicaid, finding new doctors to meet his needs since he won't be in the pediatric realm anymore. It's all so much.
I hate it. But I'd do it all over and over again for him. Because it means he's still here. David's life expectancy is "a couple of decades, possibly a little longer". According to several doctors. I know I've said it on here before. But that kind of stuff is HARD to hear at yearly appointments. Especially because we DID almost lose him 9 months ago. I thought I knew him well enough to detect when he's coming down with something. I have almost always been able to catch things before they become out of our control. There's usually some warning signs. But there was NO sign in January. He was fine when he went to bed, and septic and in kidney failure when I went to wake him up the next morning.
And I know I'm not ready. Someone once told me that I should prepare myself for what's probably inevitable. Because it's easier than being hit with tragedy suddenly. And while I totally understand that thought, I don't believe you can prepare. Either way sucks. Is thinking about something that's completely unknown healthier than being hit suddenly with something unexpected? Because I do think about it. Every. Single. Damn. Day. I have anxiety about it. I don't sleep. My mind is always "preparing" for the expected, but the unknown. I'm having anxiety about how my younger child might react to the inevitable when it happens--he got diagnosed with anxiety after the hospitalization in January. I worry about my husband's reaction. He holds it together, but he does it for mine & Kyle's sanity.
And it's so unfair.
But it's also our life. Unfair & messy. Anxious & nervous. Raw & real.
But having a David-filled life is also amazing. He equals love & hugs. Happiness & laughter. Hopes & dreams.
I don't know what our future holds. But I'm going to hold on tight. And when my "couple of decades, possibly a little longer" happens......I will do my best to fill my dreams with my memories. Because good & bad.....I'm making as many of them as I can.
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Friday, August 25, 2017
How I Failed at Parenting This Summer
This summer was tough on me. I mean TOUGH. Michael started working crazy hours back in May and it continued through August. Which means I took the kids with me to work WAY more than I thought I would have to.
Kyle is easy at work. Give him a phone and sometimes his favorite cousin and he could be entertained for hours.
David is not easy. At all. The first few times we were there on a regular basis, he was fine. He was happy to explore a new territory. I let him scoot around the office freely. Until he busted his head back open. Along with the huge gash knee. And the cuts and scrapes on his elbows and arms. As well as the terrible bruising along his spine. I knew he could no longer be free.
So we tried the wheelchair. He hated not being able to move. He cried a lot. He thrashed around a ton. So I brought his blue tumbleforms chair. It worked for a little while. But he eventually figured out how to dive face-first out of it onto the office floor in front of him.
He peed through every pair of shorts that I brought with me. Every time we were there. He refused to wear a shirt. Sometimes going shirtless would ease his frustration and anger, so we just went with that as a dress code for him while we were there.
Needless to say, it was hard for me to concentrate with him there. I have never been so grateful for school to start. I miss him. But I just can't be functional while David is at work with me.
I know we shouldn't grade ourselves compared to other parents. But I often do.
I had so many things I wanted to do with the kids this summer. But by the end of the day, I was exhausted. Michael was tired as well. But when he got home from work, several days a week I escaped to a friend's house for some me time. We self-tanned, shaved faces (ask me about the tinkle razors-seriously life changing), ate food that wasn't good for us, drank adult drinks, and just talked. I never knew how much I needed time for myself. But I did. And while I still feel badly for ditching my children as soon as dinner was over, I NEEDED to. And they survived.
Speaking of dinner........Let's chat about what my family ate for meals this summer. Occasionally for breakfast, we'd make scrambled eggs. But most of the time Kyle just ate cold pizza. Or 4 (yes-4) almonds. And I didn't care. For lunch----he ate junk. Seriously. Slim Jims and popsicles galore. And it was ok. For dinner. Goodness. I don't think I shopped with a complete dinner list and grocery list made all summer. Michael grilled out a lot. We foraged around in the refrigerator and freezer a lot for scraps of food that could possibly turn into a meal. Magically. Because I usually didn't have items to make a complete meal out of anything. David ate the most nutritiously here, getting his 6 cans of Ensure daily as well as all of his necessary medications. That is one thing that I did not falter with. But poor Michael and Kyle. We ate like crap. And we survived.
Those things that I wanted to do with the kids. They didn't happen. I was either too tired, or David was too fussy. Or I just didn't feel like loading David into and out of the van multiple times and pack a diaper bag and guess how many changes of clothes, or how many diapers we might need. Mentally, I just didn't want to do it. Kyle played way too many video games and watched numerous Minecraft and Try Not to Laugh videos on YouTube. And he survived.
I often felt like I was drowning this summer. I could barely keep up on laundry, bills, cleaning, or life. I felt like I failed immensely. I know I drank too much. More than I usually do in the summer. Give me all the fruity drinks in the world. Michael has taken up whiskey. LOL
But despite us being a hot mess ALL SUMMER LONG......those kids were never loved any less by myself or Michael. We made it. We still managed to take a vacation, Kyle managed to get to the pool, run his first 10K, jump on the trampoline, read some giant books, and play with old and new friends. I was looking back on my phone at all the pictures I've taken. And my kids (mostly) had smiles on their faces and there were memories to be had by all.
So did I really fail at parenting? I think I might have quite possibly made it through with a passing grade (probably not more than a C though). We had our rough moments. But we had great ones as well.
Thursday, July 13, 2017
Strength vs Will
"You are one of the strongest people I know."
I hear it a lot. I know others who hear it a lot.
I am not strong.
I am so weak.
At this time in my life, I can't even count how many times I have assumed the fetal position and cried for hours on end. Hundreds at least.
I can't tell you many times I have pasted a smile to my face and pretended that everything is ok. When ok is about the farthest thing away for me. Or us.
I can't tell you how many times I just want to sit on the couch and stare into space. And do nothing. Not even take care of my kids.
I live for days on end waiting for my oldest child to come out of a state of unawareness and show signs that he is among us again and aware of our love for him.
I often lose my patience when he cries non-stop for days. And I cannot fix it.
I can't tell you how often I have needed to step away from everything. Family, friends, work, life. Everything.
My strength is really weak. Emotionally I have had a really hard time for the last 7 months holding it all together. He was so so sick. You think you're prepared for something like that and the possibility that comes along with that. You will never be prepared. Not ever.
Physically-people see me as strong. I lift and carry this 70 pound child to and from the van multiple times a day. I've dropped him before. Twice actually. Trying to put him in the van. I cried both times. My back physically aches daily. I question how we will continue to do this.
While my strength is weak, my will is incredibly strong. I have a fire-driven will to move on.
I do cry. I cry so much. If you've seen me cry-----we must be close friends. Because I do try to hide that part of me.
I should not be ashamed that I cry when things are hard. Because I often find my tears are the fire to strengthen my will. My will that I will continue.
I do paste a smile on my face. I let people in on this blog. But rarely do you see that side of me in real life. Sometimes I'm embarrassed about the lack of control over my emotions. That fake smile gets me through a day of embarrassment. Because if I'm smiling, no one will ask me what's wrong.
I will try harder to stay real. Sometimes "fake it til you make it" is a necessary reality. But I am going to find the will to be honest with those who care about me.
My willingness to wait out so many days of David being locked away within himself or stop crying for days on end is so worth it. Because we get true happiness and a joyful soul from him. Sometimes he is almost on heightened awareness after being locked away for days. And we get amazing happiness from him.
My strongest will comes from his strength. David is absolutely the strongest individual that I know.
He is physically strong. Freakishly strong. His strength and will have gotten him through multiple severe illnesses in his young life. He has figured out how to be mobile to the best of his capabilities despite the odds stacked against him in terms of muscle spasms and lack of body control.
He is the best possible David he can be when he feels the power to do so.
My life would be empty without his strength.
I am weak and he is strong. But he gives me my will. My purpose.
I hear it a lot. I know others who hear it a lot.
I am not strong.
I am so weak.
At this time in my life, I can't even count how many times I have assumed the fetal position and cried for hours on end. Hundreds at least.
I can't tell you many times I have pasted a smile to my face and pretended that everything is ok. When ok is about the farthest thing away for me. Or us.
I can't tell you how many times I just want to sit on the couch and stare into space. And do nothing. Not even take care of my kids.
I live for days on end waiting for my oldest child to come out of a state of unawareness and show signs that he is among us again and aware of our love for him.
I often lose my patience when he cries non-stop for days. And I cannot fix it.
I can't tell you how often I have needed to step away from everything. Family, friends, work, life. Everything.
My strength is really weak. Emotionally I have had a really hard time for the last 7 months holding it all together. He was so so sick. You think you're prepared for something like that and the possibility that comes along with that. You will never be prepared. Not ever.
Physically-people see me as strong. I lift and carry this 70 pound child to and from the van multiple times a day. I've dropped him before. Twice actually. Trying to put him in the van. I cried both times. My back physically aches daily. I question how we will continue to do this.
While my strength is weak, my will is incredibly strong. I have a fire-driven will to move on.
I do cry. I cry so much. If you've seen me cry-----we must be close friends. Because I do try to hide that part of me.
I should not be ashamed that I cry when things are hard. Because I often find my tears are the fire to strengthen my will. My will that I will continue.
I do paste a smile on my face. I let people in on this blog. But rarely do you see that side of me in real life. Sometimes I'm embarrassed about the lack of control over my emotions. That fake smile gets me through a day of embarrassment. Because if I'm smiling, no one will ask me what's wrong.
I will try harder to stay real. Sometimes "fake it til you make it" is a necessary reality. But I am going to find the will to be honest with those who care about me.
My willingness to wait out so many days of David being locked away within himself or stop crying for days on end is so worth it. Because we get true happiness and a joyful soul from him. Sometimes he is almost on heightened awareness after being locked away for days. And we get amazing happiness from him.
My strongest will comes from his strength. David is absolutely the strongest individual that I know.
He is physically strong. Freakishly strong. His strength and will have gotten him through multiple severe illnesses in his young life. He has figured out how to be mobile to the best of his capabilities despite the odds stacked against him in terms of muscle spasms and lack of body control.
He is the best possible David he can be when he feels the power to do so.
My life would be empty without his strength.
I am weak and he is strong. But he gives me my will. My purpose.
Sunday, July 2, 2017
Seniors
Social media has been so much fun to watch this summer. Lots of family vacation pictures, ball pictures, pool pictures. So many special memories for families and individuals to treasure.
Some of my favorites? Seeing many friends post their kids' senior pictures. It's awesome to see what wonderful people some of these young men and women are growing into. So close to adulthood, yet still relying on mom and dad for a bit longer.
Did you know that technically David should be a senior this year? He should be a part of the class of 2018.
He's not. And that's quite alright. I've come to terms with that a long, long time ago. He will be listed this year at his school as a junior. We "retained" him a year in jr high. It was what was best for him. He will go to high school until he's 21. And we don't really know what his future will hold after that, and can only pray that there will be some kind of day program for adults that he can participate in.
We aren't looking at colleges. We aren't worried about SAT's or ACT's. We aren't out shooting his senior pictures.
What I am doing to prepare for his 18th birthday: Worrying
I don't sleep at night. So I research how to gain legal guardianship of an adult with disabilities. I research how to gain SSDI for him. I research local specialists in the area for his many symptoms of You-Hoover-Fong Syndrome. Because pediatrics is coming to an end for us. It's so scary and intimidating, and causes me more stress than I'd like to admit. Some might not understand this process. I don't understand this process. I want to understand it. I'm trying to understand it. But it's a lot to take in.
What I do know: I will never stop researching until I DO understand it.
I am tired. So tired. But trying to be informed is the way to do this. Next on my list is researching attorneys that handle this kind of thing. It makes me sick knowing that I have to pay someone to help me be able to make decisions in my mentally handicapped adult child. It's not automatic. I have to go through the proper channels to ensure that I will continue to be the one to make choices for him. I know him best in this entire world. The court has to agree with that decision. I'm sure it won't be a problem. But still. They have to appoint me as his guardian.
And while we might not be taking "senior" pictures of him. I will continue to take regular, everyday pictures of him. And continue to share the heck out of them with my friends, family, and social media audiences. I keep it pretty real. And the world probably needs a little more reality at times.
Congratulations to my friends' amazing children entering their last year as a child. God has blessed you all with so much goodness and it makes my heart smile to watch them grow and develop.
Some of my favorites? Seeing many friends post their kids' senior pictures. It's awesome to see what wonderful people some of these young men and women are growing into. So close to adulthood, yet still relying on mom and dad for a bit longer.
Did you know that technically David should be a senior this year? He should be a part of the class of 2018.
He's not. And that's quite alright. I've come to terms with that a long, long time ago. He will be listed this year at his school as a junior. We "retained" him a year in jr high. It was what was best for him. He will go to high school until he's 21. And we don't really know what his future will hold after that, and can only pray that there will be some kind of day program for adults that he can participate in.
We aren't looking at colleges. We aren't worried about SAT's or ACT's. We aren't out shooting his senior pictures.
What I am doing to prepare for his 18th birthday: Worrying
I don't sleep at night. So I research how to gain legal guardianship of an adult with disabilities. I research how to gain SSDI for him. I research local specialists in the area for his many symptoms of You-Hoover-Fong Syndrome. Because pediatrics is coming to an end for us. It's so scary and intimidating, and causes me more stress than I'd like to admit. Some might not understand this process. I don't understand this process. I want to understand it. I'm trying to understand it. But it's a lot to take in.
What I do know: I will never stop researching until I DO understand it.
I am tired. So tired. But trying to be informed is the way to do this. Next on my list is researching attorneys that handle this kind of thing. It makes me sick knowing that I have to pay someone to help me be able to make decisions in my mentally handicapped adult child. It's not automatic. I have to go through the proper channels to ensure that I will continue to be the one to make choices for him. I know him best in this entire world. The court has to agree with that decision. I'm sure it won't be a problem. But still. They have to appoint me as his guardian.
And while we might not be taking "senior" pictures of him. I will continue to take regular, everyday pictures of him. And continue to share the heck out of them with my friends, family, and social media audiences. I keep it pretty real. And the world probably needs a little more reality at times.
Congratulations to my friends' amazing children entering their last year as a child. God has blessed you all with so much goodness and it makes my heart smile to watch them grow and develop.
Saturday, June 17, 2017
January 16th
I think I'm ready to share.
This was taken 2 days before his hospitalization. He was totally fine in the days before he got so sick.
I know I shared on Facebook our scary week in January when David was super sick. But I haven't written about it yet. It was scary, a lot to process, and honestly I didn't want to jinx things. But the memories are engraved on my heart & soul, so maybe writing them down will ease the constant anxiety I have regarding everything David.
Monday morning. I went to wake David & start meds like I usually do. As soon as I opened the door, I knew there was something wrong. He was stuck, on his stomach, in the corner of the bed. His arm was bent under him at an odd angle. His breathing was heavy and he was drenched in sweat. I assumed he was in pain and immediately got him out of that awkward position. I cleaned him up and changed his clothes. That entire time, he wouldn't wake up. I thought his breathing was evening out, but took a video and sent it to my husband, mom, and my sister to see what their thoughts were. The video didn't show the shallowness of his breaths. Or his limp demeanor. It only showed him sleeping.
After Kyle woke, we watched him a little longer. Kyle knew something wasn't right as well. Our doctor's office had us bring him in immediately. When I picked David up to leave, I knew there was a huge problem when I noticed his complete lack of head control. When we arrived at our doctor's office, they knew his color was awful, breathing was shallow, and his O2 was 75. I was calling Michael at work to have him come straight there. The ambulance was called. Kyle was crying and not wanting to leave with a friend. I am so glad Michael arrived when the ambulance did. Kyle did finally agree to leave, Michael ran home to grab some necessities, and David and I took a quick ride to the ER. Michael was so quick, he got there very shortly after we arrived.
David slept the entire time. When we got to the hospital, they were finally able to get one blood pressure. And it was low. 75/50 low. His heartrate is normally pretty high (as many kids with neuro issues can be). But that morning, it was raging in the 170's. His limbs were absolutely frozen. They couldn't get an IV or draw blood. In his entire life, I have never seen anyone unable to grab a vein on David. His veins are normally phenomenal. Because of the low pressure and general state in whole, his veins just kept rolling on them. After every nurse in the ER tried for an IV and most of the lab techs tried to get blood, they finally got one IV and about 1ml of blood for labs by using hand warmers to warm him up a little. The lab questioned if they could even get results with that little amount. The ER dr insisted they better try their hardest.
While we waited for lab results, the staff was amazing. They called the pediatric ICU dr down and she was wonderful. But worried. Extremely worried. We had to try to get his blood pressure back up, so they added a med for that. The ER dr noticed his pupils were enormously different in size. He had a head CT, which was normal. Then labs came back and they weren't good. He was septic and in renal failure. They were showing extremely high white counts. Definitely an infection of some sort was present somewhere. They added bolus after bolus of saline to try to kick his kidneys in gear. And when they added the antibiotics, he needed another IV. More than 50 sticks in his hands, arms, feet, and neck-they were still unable to get one in. The ICU dr was gowned up and ready to do a central line, when one nurse saved the day and somehow secured another one in the crook of his elbow.
We spent 11 hours in the emergency room before he was moved to the ICU. The dr told us we couldn't leave (not that we were going to), because out of an entirely full ICU, David was her most critical patient. I can remember her hugging me, and telling me she had lost a child and was trying her hardest to keep me out of her club. We were so scared and trying to fill our families in while trying to stay calm. Michael is much better at it than me.
A little before midnight, his blood pressure really took a turn for the better and the multiple saline boluses had helped his hydration. Getting labs on him that evening went so much better than it had earlier in the day. And the good news was that his kidney numbers (so many different numbers for different things-lots we had never heard of before) had slightly improved.
All the while, David continued to sleep. And sleep. And sleep. If you know David, he is quite known for his lack of sleep in the hospital. No matter how sick he is. He doesn't sleep. It's exhausting and the reason Michael stays with him on overnights most of the time. He handles lack of sleep much better than I do. I just get overly emotional. The next morning, the PICU dr was leaving for the week and was supposed to be off at 7am. She stayed until noon, waiting on the latest labs to come back. And they came back significantly better. That was they only way she was going to feel comfortable leaving him in someone else's hands. (If you know Dr. Bello at Carle, please give her a shout out from us. She was amazing with us and with David.)
The new dr that came on board for the remainder of David's stay was equally as great. He added a third antibiotic to the mix. I noticed his belly was pretty distended and suggested they do a cleanout while we were there. But before we did that, the new ICU dr wanted a CT of his belly. Which showed exactly what I had thought. Lots of stool. David suffers from chronic constipation due to low tone. This was not our first round with a hospital cleanout, nor will it be our last. So we added golytely through his gtube. David slept through ALL of this. He has never had any type of CT without sedation before. I think his weakness made it that much scarier for me.
After a few days, a ton of diapers (those nurses deserve a huge hand for all they deal with), chest xrays every morning, (Did mention that we could never be sure if pneumonia was present? His xray would look different in every single one of them. Thanks to You-Hoover-Fong for the wonky anatomy.) David was able to wake up for about 5 minutes at a time and start to show a little awareness. His labs were SLOWLY showing improvement. His kidney numbers were coming up and down and his septic numbers were coming down. We had the best nurses. Michael and I took turns going home at night with Kyle, who was having a really difficult time handling this.
Unfortunately, his nothing ever grew on his cultures. And David started having an allergic reaction. To what? We have no clue. He was like a weather vein with his rash. It would start on his face and migrate all over his body. He began to look like the Pillsbury Doughboy. So puffy from all the extra saline boluses. The dr took him off the antibiotics because of the rash and the lack of actually knowing if there had been a bacterial infection needing them.
By Thursday, his numbers were looking much better and there was talk of trying to move him up to the peds floor. But there were no rooms available. On Friday, still no rooms and the ICU dr feared if we sent him up there, he would contract one of the nasty viruses that were floating around on that floor. He chose to discharge us straight from the ICU to go home.
We surprised Kyle on the way home after getting a phone call that morning from his teacher telling us he couldn't get Kyle to stop crying that morning. He was very excited to see David in the van.
When we got home, we watched David like a hawk. He missed another full week of school still trying to recover. I don't know what was raging in his body to cause him so much distress, but his body needed sleep. The first week home, he was sleeping a good 18 hours each day. The next week I sent him to school, still sleeping a lot, but hoping he would be able to start functioning a little more with his typical schedule in place. It took probably a full month for him to get back to "normal" and a full 2 months for me to not be as paranoid about every little thing.
No matter how many times I hear that David might depart this world for a heavenly world before me, doesn't mean I will ever be ready to face that heartache. This was the most terrified I had ever been of facing that fear. I am so grateful to our dr, the ER dr, the PICU drs, our families, our friends, and our school districts for all the love, concern, prayers, and offers of help. Special shout out to my sister for keeping my dogs for a week (they can be a handful) and dealing with her own health stuff. We could not get through events like these without some special people in our lives. And we are so lucky to have all of you. But especially lucky to continue to have life with our boy.
This was taken 2 days before his hospitalization. He was totally fine in the days before he got so sick.
Monday morning. I went to wake David & start meds like I usually do. As soon as I opened the door, I knew there was something wrong. He was stuck, on his stomach, in the corner of the bed. His arm was bent under him at an odd angle. His breathing was heavy and he was drenched in sweat. I assumed he was in pain and immediately got him out of that awkward position. I cleaned him up and changed his clothes. That entire time, he wouldn't wake up. I thought his breathing was evening out, but took a video and sent it to my husband, mom, and my sister to see what their thoughts were. The video didn't show the shallowness of his breaths. Or his limp demeanor. It only showed him sleeping.
After Kyle woke, we watched him a little longer. Kyle knew something wasn't right as well. Our doctor's office had us bring him in immediately. When I picked David up to leave, I knew there was a huge problem when I noticed his complete lack of head control. When we arrived at our doctor's office, they knew his color was awful, breathing was shallow, and his O2 was 75. I was calling Michael at work to have him come straight there. The ambulance was called. Kyle was crying and not wanting to leave with a friend. I am so glad Michael arrived when the ambulance did. Kyle did finally agree to leave, Michael ran home to grab some necessities, and David and I took a quick ride to the ER. Michael was so quick, he got there very shortly after we arrived.
David slept the entire time. When we got to the hospital, they were finally able to get one blood pressure. And it was low. 75/50 low. His heartrate is normally pretty high (as many kids with neuro issues can be). But that morning, it was raging in the 170's. His limbs were absolutely frozen. They couldn't get an IV or draw blood. In his entire life, I have never seen anyone unable to grab a vein on David. His veins are normally phenomenal. Because of the low pressure and general state in whole, his veins just kept rolling on them. After every nurse in the ER tried for an IV and most of the lab techs tried to get blood, they finally got one IV and about 1ml of blood for labs by using hand warmers to warm him up a little. The lab questioned if they could even get results with that little amount. The ER dr insisted they better try their hardest.
While we waited for lab results, the staff was amazing. They called the pediatric ICU dr down and she was wonderful. But worried. Extremely worried. We had to try to get his blood pressure back up, so they added a med for that. The ER dr noticed his pupils were enormously different in size. He had a head CT, which was normal. Then labs came back and they weren't good. He was septic and in renal failure. They were showing extremely high white counts. Definitely an infection of some sort was present somewhere. They added bolus after bolus of saline to try to kick his kidneys in gear. And when they added the antibiotics, he needed another IV. More than 50 sticks in his hands, arms, feet, and neck-they were still unable to get one in. The ICU dr was gowned up and ready to do a central line, when one nurse saved the day and somehow secured another one in the crook of his elbow.
We spent 11 hours in the emergency room before he was moved to the ICU. The dr told us we couldn't leave (not that we were going to), because out of an entirely full ICU, David was her most critical patient. I can remember her hugging me, and telling me she had lost a child and was trying her hardest to keep me out of her club. We were so scared and trying to fill our families in while trying to stay calm. Michael is much better at it than me.
A little before midnight, his blood pressure really took a turn for the better and the multiple saline boluses had helped his hydration. Getting labs on him that evening went so much better than it had earlier in the day. And the good news was that his kidney numbers (so many different numbers for different things-lots we had never heard of before) had slightly improved.
All the while, David continued to sleep. And sleep. And sleep. If you know David, he is quite known for his lack of sleep in the hospital. No matter how sick he is. He doesn't sleep. It's exhausting and the reason Michael stays with him on overnights most of the time. He handles lack of sleep much better than I do. I just get overly emotional. The next morning, the PICU dr was leaving for the week and was supposed to be off at 7am. She stayed until noon, waiting on the latest labs to come back. And they came back significantly better. That was they only way she was going to feel comfortable leaving him in someone else's hands. (If you know Dr. Bello at Carle, please give her a shout out from us. She was amazing with us and with David.)
The new dr that came on board for the remainder of David's stay was equally as great. He added a third antibiotic to the mix. I noticed his belly was pretty distended and suggested they do a cleanout while we were there. But before we did that, the new ICU dr wanted a CT of his belly. Which showed exactly what I had thought. Lots of stool. David suffers from chronic constipation due to low tone. This was not our first round with a hospital cleanout, nor will it be our last. So we added golytely through his gtube. David slept through ALL of this. He has never had any type of CT without sedation before. I think his weakness made it that much scarier for me.
After a few days, a ton of diapers (those nurses deserve a huge hand for all they deal with), chest xrays every morning, (Did mention that we could never be sure if pneumonia was present? His xray would look different in every single one of them. Thanks to You-Hoover-Fong for the wonky anatomy.) David was able to wake up for about 5 minutes at a time and start to show a little awareness. His labs were SLOWLY showing improvement. His kidney numbers were coming up and down and his septic numbers were coming down. We had the best nurses. Michael and I took turns going home at night with Kyle, who was having a really difficult time handling this.
Unfortunately, his nothing ever grew on his cultures. And David started having an allergic reaction. To what? We have no clue. He was like a weather vein with his rash. It would start on his face and migrate all over his body. He began to look like the Pillsbury Doughboy. So puffy from all the extra saline boluses. The dr took him off the antibiotics because of the rash and the lack of actually knowing if there had been a bacterial infection needing them.
By Thursday, his numbers were looking much better and there was talk of trying to move him up to the peds floor. But there were no rooms available. On Friday, still no rooms and the ICU dr feared if we sent him up there, he would contract one of the nasty viruses that were floating around on that floor. He chose to discharge us straight from the ICU to go home.
We surprised Kyle on the way home after getting a phone call that morning from his teacher telling us he couldn't get Kyle to stop crying that morning. He was very excited to see David in the van.
When we got home, we watched David like a hawk. He missed another full week of school still trying to recover. I don't know what was raging in his body to cause him so much distress, but his body needed sleep. The first week home, he was sleeping a good 18 hours each day. The next week I sent him to school, still sleeping a lot, but hoping he would be able to start functioning a little more with his typical schedule in place. It took probably a full month for him to get back to "normal" and a full 2 months for me to not be as paranoid about every little thing.
No matter how many times I hear that David might depart this world for a heavenly world before me, doesn't mean I will ever be ready to face that heartache. This was the most terrified I had ever been of facing that fear. I am so grateful to our dr, the ER dr, the PICU drs, our families, our friends, and our school districts for all the love, concern, prayers, and offers of help. Special shout out to my sister for keeping my dogs for a week (they can be a handful) and dealing with her own health stuff. We could not get through events like these without some special people in our lives. And we are so lucky to have all of you. But especially lucky to continue to have life with our boy.
Thursday, May 11, 2017
Are You a Teacher?
I guess this week is Teacher Appreciation Week. Or maybe it was last week. I was a little confused about what days it all went down on.
Have you been one of my children's teachers? Or aides? Then this post is for you.
Let's start with the youngest.
In his early school days:
If you've ever had to move mountains to get him to just move at anything other than a snail's pace to go to recess, PE, lunch, library, or to complete work-You are my hero. Believe me. I've done it and I know it wasn't easy. I can remember my mom coming home from grandparent's day in kindergarten to tell me that he was the slowest one in the class on a project.
If you've ever encouraged his strong love of reading-You are my hero. First and second grades were when he became a reading machine. And he still loves reading.
If you've ever had to approach us as parents to tell us that he is unable to focus on work if there are ANY distractions at all (like chairs moving in the room above his)-You are my hero. It was the last thing I'm sure you wanted to do. It was the last thing I wanted to hear. You handled us trying numerous oils, behavioral rewards and consequences, and classroom modifications before we took the plunge of trying medication. And you made us feel better by telling us how great he was doing and how changed he was after starting that medication.
If you've ever just let him have a year with no drama, no calling us, just taking care of business in class and letting him and us just take a little bit of a breather-You are my hero. He began to spread his wings a little bit that year and just be him.
If you've ever encouraged him to do a voluntary report on any subject he could (he chose tigers)-You are my hero. Because getting him to do anything "extra" in schoolwork is a challenge. I know it and you know it. But because you made it fun and rewarded him, he loved it.
If you've ever had to spend 45 minutes on the phone with me trying to come up with a plan to help him deal with the loss of our dog-You are my hero. That was a super difficult time for all of us. Thank you for helping us through it. And we made it together.
If you've ever taken an interest in something he loves to do and not let him just be a "backseat passenger" in your classroom-You are my hero.
If you've ever ran a 5K with him, and probably slowed your own time down by keeping an eye on a little person while running-You are my hero. That made him feel like a complete rock star for at least a week, despite it not being his best time.
I so appreciate every one of these teacher that have made an impact on Kyle's life in some way or another.
And let's move on to the old one. This could get interesting. These teachers and aides do so much that I couldn't do.....
This will all cover all years. Because while David's body has grown, his mind has not. So it will just cover you all.
If you've ever been peed on, pooped on, or puked on by my son and not cursed at me or him while he was doing it-You are a Saint. For real. Because I know that choice words come out of my mouth when that happens here. It isn't a good time, there's not finding the silver lining. It's just all gross in general. And if you have cursed me at those times-then you're human and I totally don't blame you.
If you've ever just changed his diaper in general-You are my hero. Because it is one less for me to change. And because he can now throat-kick you in the process and cause temporary loss of breathing.
And somewhat related to the last part of that one.
If you've ever been bitten, hit, scratched, kicked, punched, head-butted, etc by my child. First-I'm sorry. Second-You are my hero. I've gone through all of those. It sucks. But he's mine which makes it a little easier. But he's NOT yours. And you still like him.
If you've ever had a pediasure or ensure shower because of my child's wild ways during a feeding-You are my hero. It means you've probably gone the rest of the day smelling of vanilla formula. And being sticky. Ensure showers are something you just need a real shower to feel clean and un-sticky afterwards.
If you've ever called me a little panicked because there was just something not quite right, but you couldn't put your finger on it-You are my hero. It means you know him well enough to know that he's not quite right. We are a small club in regards to knowing him so well inside and out.
If you've laughed with him and loved on him-You are my hero. His quality of life is my number one goal for him. You are an essential part to his quality and we love you all for it.
If you are a teacher, but never been a teacher of my kids----You are still my hero. Because I almost guarantee that you've gone through a lot of those things my kids' teachers have gone through. I'll be honest and say I hope most of what you relate to are the top part of my post---but either way----you do so much for our youth. And I hope you're student's parents appreciate you on any given day.
Happy Teacher's Appreciation Week!
(Or was it last week???)
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