I'm sure it wasn't there long. My kids are used to my constant hugs and caresses. They brace for impact when they hear the door slam shut as I enter the house. So, I'm sure that lump on his cheek couldn't have been there more than a day. I noticed it on Saturday. It seemed bigger on Sunday. He winced as I palpated it, to check if it was hard, lumpy or immobile (all really bad things). It was none of those things.
But it was tender, and seemed to be getting bigger. So we called for an appointment Monday, saw the doctor today, got referred to the otolaryngologist today and added an ultrasound of his cheek to his already scheduled radiology appointment on Friday. I'm hoping the specialist can see us sooner rather than later. Because all I can do while I'm working on the Company's most important Application is weep silently in my cubicle.
While it's true that we don't know what it is or what Bo will have to endure, it is also true that I am prone to catastrophic thinking (because, why the hell not?). And anyway, who doesn't like a good cry? So now that I've been sobbing, weeping and leaking tears for hours, I think I will collapse into bed.
Pray for me (selfish to ask for me 1st, but hey, Lent doesn't start for a whole 'nother week!), pray that Bo's cheek lump resolves without intervention, pray that my spouse can put up with all my weeping, pray that Ahn decides that the last year of potty training was not a joke.
But hey, Bo's line turned 5 this week! so we went to see the kids' 1st run theatre movie (LEGO movie) to celebrate. We all loved it! And having such a fun, refreshing weekend definitely put me in a power position when faced with this new plot twist. Now, for bed.
Tuesday, February 25, 2014
Friday, January 24, 2014
Merry Christmas, Happy New Year and Happy Year of the Horse (a little in advance)!
When I am struggling with fear, uncertainty and pain, I remind myself that the person whose body is affected with a life threatening condition is my child. It takes my breath away. But before I discount my own pain, dismiss my ability to understand what my son or my daughter are experiencing or the excruciating discovery how this disease impacts our lives on the daily, I want to share an embarrassing moment, I know everyone can relate to.
There were no conference rooms available, and I had the misfortune of quiet morning with my coffee, Pandora and laptop destroyed by meeting invitations. They piled into my calendar with silent efficiency, one after another, back-to-back. But it was snowing and short notice. So my boss and I hastily regrouped in our senior director's office. She was out sick, and her office had a door. But this meeting had been called by a scientist, and she had forgotten to send a dial-in number. So I tried calling the conference room. At this point, we were 12 minutes into a 30 minute meeting, and I had another meeting lined up. So I called IT for the number. After more minutes of back and forth, she still could not find it. I spent a few minutes asking WHY WHY WHY she couldn't find it, after which, my gentle giant of a boss started pacing. After a pause he quietly stated that he did not understand why I would speak to anyone in that tone. And as the thoughts of protest formed in my mind, I flushed with embarrassment. There is really no excuse for poor behavior.
Horrifying.
Yep. Never too old to learn. Not even a simple lesson I thought I had nailed. Nope. Never too old to fail.
So, you got that one, right? See, putting yourself into my shoes isn't that hard.
So when Bo decided he wanted to participate in the Children's Christmas Eve Mass, I did not say no. Having a little skin in the game builds empathy. And practicing Active Love, only means he will get better at being an Active participant in our church family, and the greater World Family. After a long day of celebrating and the excitement of reading Prayers of the Faithful to a packed parish, I was a little sad to see how exhausted Bo was, but not overly surprised.
We hustled the kids to bed and started frantically wrapping gifts. We were scheduled to fly out at 7AM, and were looking down the barrel of an all-nighter. But by this time Bo was thrashing around, moaning in pain. And it went from the most beautiful night of my sweet boy leading our parish in prayer, to me on my knees, praying he was not being attacked by bacteria in his blood stream. I took his temperature, cursed myself for not having a blood pressure cuff in the house, and took his temperature again. We made the call to stay home at 2AM. He was in pain, and we were not going to travel under those conditions, clinical signs (all normal) be damned. Turns out, he had a massive ear infection that burst the ear drum on Christmas Day (Oh, Merry Christmas to you, too).
But the miracle, the Christmas present that no one counted on, was that even though we had to cancel our trip, we would celebrate a cozy Christmas at home. The kids would get to their stockings on Christmas morning. And Bo's every morning vomiting would stop. Just. Stop. Whatever it was that changed (there were several changes that the doctors prescribed all at once in the interest of managing Bo's pain and stabilizing his blood chemistry), he has been emesis-free for the longest period of time in three years.
So let's break it down. We cancelled our trip to Disney (boo). Bo had an ear infection (boo). We went to Brown Couch after all (yay). We got to celebrate Christmas at home (yay). And my son volunteered to participate in Mass (double yay). And after all the dust settled, Bo's vomiting has ceased (oh, please! Let's all Praise the LORD!!). I'm most grateful for something that most parents will never ever experience (daily vomiting), which seems foreign, until I tell you that it's like potty training. You spend years wiping someone's rear-end, every day (in fact, multiple times a day). And then one day, you realize that you are doing it less. And then not at all. And you are all about Praising the Lord! See? Not that hard to relate to.
And while we're on the topic of eternal gratitude, I'm reminded by actively participating in a Facebook support group, that Bo's Omegaven status, his private duty nursing, and the school nurse hired to shadow him are incredible gifts. There are kids out there who don't have any of these life-sustaining medicines or support, not because they don't need them, but because they don't have the same resources that we do (my job's private insurance, my state's Medicaid Waiver, our school district's awesomeness). So if you've read this far, or have been following us all these years, please join me in sending a prayer, or positive vibes to the Great Universe, or meditating in Peace, that the other kids who need love, support, nursing and Omegaven get all those things and more. We couldn't do it without you.
PS, as shout out to the Save the Waiver (Illinois)! The Medicaid Waiver was SAVED and medically fragile kids can continue to receive private duty nursing and support at home.
There were no conference rooms available, and I had the misfortune of quiet morning with my coffee, Pandora and laptop destroyed by meeting invitations. They piled into my calendar with silent efficiency, one after another, back-to-back. But it was snowing and short notice. So my boss and I hastily regrouped in our senior director's office. She was out sick, and her office had a door. But this meeting had been called by a scientist, and she had forgotten to send a dial-in number. So I tried calling the conference room. At this point, we were 12 minutes into a 30 minute meeting, and I had another meeting lined up. So I called IT for the number. After more minutes of back and forth, she still could not find it. I spent a few minutes asking WHY WHY WHY she couldn't find it, after which, my gentle giant of a boss started pacing. After a pause he quietly stated that he did not understand why I would speak to anyone in that tone. And as the thoughts of protest formed in my mind, I flushed with embarrassment. There is really no excuse for poor behavior.
Horrifying.
Yep. Never too old to learn. Not even a simple lesson I thought I had nailed. Nope. Never too old to fail.
So, you got that one, right? See, putting yourself into my shoes isn't that hard.
So when Bo decided he wanted to participate in the Children's Christmas Eve Mass, I did not say no. Having a little skin in the game builds empathy. And practicing Active Love, only means he will get better at being an Active participant in our church family, and the greater World Family. After a long day of celebrating and the excitement of reading Prayers of the Faithful to a packed parish, I was a little sad to see how exhausted Bo was, but not overly surprised.
We hustled the kids to bed and started frantically wrapping gifts. We were scheduled to fly out at 7AM, and were looking down the barrel of an all-nighter. But by this time Bo was thrashing around, moaning in pain. And it went from the most beautiful night of my sweet boy leading our parish in prayer, to me on my knees, praying he was not being attacked by bacteria in his blood stream. I took his temperature, cursed myself for not having a blood pressure cuff in the house, and took his temperature again. We made the call to stay home at 2AM. He was in pain, and we were not going to travel under those conditions, clinical signs (all normal) be damned. Turns out, he had a massive ear infection that burst the ear drum on Christmas Day (Oh, Merry Christmas to you, too).
But the miracle, the Christmas present that no one counted on, was that even though we had to cancel our trip, we would celebrate a cozy Christmas at home. The kids would get to their stockings on Christmas morning. And Bo's every morning vomiting would stop. Just. Stop. Whatever it was that changed (there were several changes that the doctors prescribed all at once in the interest of managing Bo's pain and stabilizing his blood chemistry), he has been emesis-free for the longest period of time in three years.
So let's break it down. We cancelled our trip to Disney (boo). Bo had an ear infection (boo). We went to Brown Couch after all (yay). We got to celebrate Christmas at home (yay). And my son volunteered to participate in Mass (double yay). And after all the dust settled, Bo's vomiting has ceased (oh, please! Let's all Praise the LORD!!). I'm most grateful for something that most parents will never ever experience (daily vomiting), which seems foreign, until I tell you that it's like potty training. You spend years wiping someone's rear-end, every day (in fact, multiple times a day). And then one day, you realize that you are doing it less. And then not at all. And you are all about Praising the Lord! See? Not that hard to relate to.
And while we're on the topic of eternal gratitude, I'm reminded by actively participating in a Facebook support group, that Bo's Omegaven status, his private duty nursing, and the school nurse hired to shadow him are incredible gifts. There are kids out there who don't have any of these life-sustaining medicines or support, not because they don't need them, but because they don't have the same resources that we do (my job's private insurance, my state's Medicaid Waiver, our school district's awesomeness). So if you've read this far, or have been following us all these years, please join me in sending a prayer, or positive vibes to the Great Universe, or meditating in Peace, that the other kids who need love, support, nursing and Omegaven get all those things and more. We couldn't do it without you.
PS, as shout out to the Save the Waiver (Illinois)! The Medicaid Waiver was SAVED and medically fragile kids can continue to receive private duty nursing and support at home.
Monday, October 21, 2013
Hey there, hospital, it's been a while, so I guess we should visit :(
It never gets easier. I would have just as soon skipped the blog, but realized that if I was crying like a baby at some youtube clips linked on FB, then in the spirit of full disclosure, I should 'fess up.
Spoiler: Bo is doing great and his last day of antibiotics is tomorrow.
But emotionally, we are all a little out of practice, and still a bit on edge.
The school year started without the drama of a line infection, like last year. But unlike last year, hospital policy had changed. So (on the Monday before last) when he started acting a bit grumpier than usual, and complained of pain (which he NEVER does), I immediately assumed the worst. Hooray for catastrophic thinking. Being too casual caused us to miss severe dehydration in 2010 (we thought it was maladjustment to the baby) but not last fall (the new GI thought we were overreacting; it was a line infection- we were clearly correct). So even though his temperature was not very high (it never went above 100'F last fall), I knew it was a very real possibility.
The home health nurse drove in to draw blood cultures, which were run at our local hospital. All the doctors were looped in that night. The next morning (last Tuesday) when he spiked a 102'F temperature, we were off running. The cultures had already started growing, and the machine was awoken. We started packing and a room was prepared while the little one was in her morning preschool. I had to drive into work that afternoon to send a package via FedEx, as well as run a meeting the following morning. JVC spent those 2 days with both kids in-patient. His mom came to provide relief (AMEN). And friends, DVDs (via childlife), art therapy and gifts helped to break up the rest of the week. Bo was home by Friday night, and we started planning for his scheduled clinic visit across the state less than a week later.
The weekend and the early part of the week back from the hospital was an attempt at normalizing, but then we were packed and away from home for another 5 days. And even though the antibiotics schedule was blessedly humane (one dose every 8 hours), all the time away from home was wearing on all of us. This was especially telling when the little one, who only experienced extra treats and company declared on Saturday that she wanted to go home.
PS
The nephrology team is exceptional. However, during a spell this summer, the new senior fellow was left in charge of Bo's case, as the chief was traveling to Asia as a keynote speaker and the pharmacist was on vacation. Typically, they are required to comment on the laboratory testing performed monthly on Bo's blood sample to ensure his medicine is balanced to meet his health needs. When the fellow (presumably overwhelmed and/or shirking) did not call the GI team with comments, I called him myself. It was not a pleasant exchange. I do not tolerate sub-par care for my child. Thankfully, we had an uneventful clinic visit. The chief continues to provide exceptional care. And I'm pretty sure the senior fellow will not soon forget this lesson.
PPS
This is the 2nd line infection he's had while at home, ever (aka central line associated blood stream infections CLABSI or catheter-related blood stream infections CRBSI).
Spoiler: Bo is doing great and his last day of antibiotics is tomorrow.
But emotionally, we are all a little out of practice, and still a bit on edge.
The school year started without the drama of a line infection, like last year. But unlike last year, hospital policy had changed. So (on the Monday before last) when he started acting a bit grumpier than usual, and complained of pain (which he NEVER does), I immediately assumed the worst. Hooray for catastrophic thinking. Being too casual caused us to miss severe dehydration in 2010 (we thought it was maladjustment to the baby) but not last fall (the new GI thought we were overreacting; it was a line infection- we were clearly correct). So even though his temperature was not very high (it never went above 100'F last fall), I knew it was a very real possibility.
The home health nurse drove in to draw blood cultures, which were run at our local hospital. All the doctors were looped in that night. The next morning (last Tuesday) when he spiked a 102'F temperature, we were off running. The cultures had already started growing, and the machine was awoken. We started packing and a room was prepared while the little one was in her morning preschool. I had to drive into work that afternoon to send a package via FedEx, as well as run a meeting the following morning. JVC spent those 2 days with both kids in-patient. His mom came to provide relief (AMEN). And friends, DVDs (via childlife), art therapy and gifts helped to break up the rest of the week. Bo was home by Friday night, and we started planning for his scheduled clinic visit across the state less than a week later.
The weekend and the early part of the week back from the hospital was an attempt at normalizing, but then we were packed and away from home for another 5 days. And even though the antibiotics schedule was blessedly humane (one dose every 8 hours), all the time away from home was wearing on all of us. This was especially telling when the little one, who only experienced extra treats and company declared on Saturday that she wanted to go home.
PS
The nephrology team is exceptional. However, during a spell this summer, the new senior fellow was left in charge of Bo's case, as the chief was traveling to Asia as a keynote speaker and the pharmacist was on vacation. Typically, they are required to comment on the laboratory testing performed monthly on Bo's blood sample to ensure his medicine is balanced to meet his health needs. When the fellow (presumably overwhelmed and/or shirking) did not call the GI team with comments, I called him myself. It was not a pleasant exchange. I do not tolerate sub-par care for my child. Thankfully, we had an uneventful clinic visit. The chief continues to provide exceptional care. And I'm pretty sure the senior fellow will not soon forget this lesson.
This is the 2nd line infection he's had while at home, ever (aka central line associated blood stream infections CLABSI or catheter-related blood stream infections CRBSI).
Tuesday, August 6, 2013
midsummer's night dream
It seems that we've arrived on the shores of Valhalla after we finally gave up looking. Bo has made it through the hottest part of the summer without requiring hospitalization, and Ahn hasn't fallen on her head. So I call that a win.
I've still got a lot to learn in my current position (so I'm still not bored = good), and I'm still trying to decide how to best upend the applecart (for my midlife crisis). An obnoxious car seems too obvious (and too tacky), and really, not enough pain would be inflicted with this terminal project. We'll see.
Bo starts full-days of school in a few weeks, and Ahn will start preschool. I'm up way too late. And our old cars need more work than I'm ready to admit to anyone but my mechanic.
Nite, all!
I've still got a lot to learn in my current position (so I'm still not bored = good), and I'm still trying to decide how to best upend the applecart (for my midlife crisis). An obnoxious car seems too obvious (and too tacky), and really, not enough pain would be inflicted with this terminal project. We'll see.
Bo starts full-days of school in a few weeks, and Ahn will start preschool. I'm up way too late. And our old cars need more work than I'm ready to admit to anyone but my mechanic.
Nite, all!
Sunday, July 21, 2013
Microvillous Inclusion Disease Network
We had our first annual meeting at the Oley Conference on the Cape this year. A third of the North American families met as a subcommittee (read: grillin and chillin), which is ironic considering none of our MID kids actually eat. These evenings gave me a shot in the arm, and a conviction that these kids may have challenges, but that doesn't mean they are sick.
I love Oley. Just seeing the teenagers slouching around and being teenagers with their backpacks and curly tubing, infusing through all their drama, makes me tear up. As I follow the papers coming out and the new clinical trials being planned for regenerative medicine for the small intestines and gene therapy for single gene mutations, I know there are legions of men and women working to make our kids lives safer. And I truly believe this is something we will see in our lifetime.
Faith, hope and love.
I love Oley. Just seeing the teenagers slouching around and being teenagers with their backpacks and curly tubing, infusing through all their drama, makes me tear up. As I follow the papers coming out and the new clinical trials being planned for regenerative medicine for the small intestines and gene therapy for single gene mutations, I know there are legions of men and women working to make our kids lives safer. And I truly believe this is something we will see in our lifetime.
Faith, hope and love.
Saturday, June 22, 2013
Celebrity
http://stateofopportunity.michiganradio.org/post/drug-shortages-are-affecting-children-nicu
It came as no surprise to me that Bo's last day of kindergarten would be special. An award-winning journalist sat in the front row, recording hours of audio footage. She walked home with us and spent another hour talking to both Bo and me (see/hear the link above).
What surprised me, strangely, was realizing how many of my friends, family and colleagues tuned into the naturally running public radio programming. And the commensurate outpouring of acknowledgement was a tremendous boost. I'm pretty sure my heart grew three sizes too big.
As we prepare to join the big, annual family reunion for a family that no one hopes to join, I'm excited for Bo. I'm deliriously happy that he is old enough to see and meet and make friends with other people with the same medical technology and the same (or higher functioning, in the case of adults and older teens) level of understanding. Not that his condition or his brilliance will ever be normalized, but that he feels this community wrapping its arms around him, and us, in a way that our dear and loving typical community cannot.
I get misty looking at Bo, not just because he is an incredible guy in his most absolute essence, but because his BEING is a result of the love from all these communities, intimate and professional, typical and affected, local and international. He is running and singing, inventing and drawing, reading and sleeping peacefully because the many gestures of many hands seen and unseen are working around the clock for him.
I'm with the band.
It came as no surprise to me that Bo's last day of kindergarten would be special. An award-winning journalist sat in the front row, recording hours of audio footage. She walked home with us and spent another hour talking to both Bo and me (see/hear the link above).
What surprised me, strangely, was realizing how many of my friends, family and colleagues tuned into the naturally running public radio programming. And the commensurate outpouring of acknowledgement was a tremendous boost. I'm pretty sure my heart grew three sizes too big.
As we prepare to join the big, annual family reunion for a family that no one hopes to join, I'm excited for Bo. I'm deliriously happy that he is old enough to see and meet and make friends with other people with the same medical technology and the same (or higher functioning, in the case of adults and older teens) level of understanding. Not that his condition or his brilliance will ever be normalized, but that he feels this community wrapping its arms around him, and us, in a way that our dear and loving typical community cannot.
I get misty looking at Bo, not just because he is an incredible guy in his most absolute essence, but because his BEING is a result of the love from all these communities, intimate and professional, typical and affected, local and international. He is running and singing, inventing and drawing, reading and sleeping peacefully because the many gestures of many hands seen and unseen are working around the clock for him.
I'm with the band.
Wednesday, June 12, 2013
The Natural Order
Things in Bo's world are right. They follow a natural order. You turn 6, get lots of LEGOs, finish kindergarten and have your baby sister idolize you.
For us, all that is expected from a 6 year old are all things that we consider novel (for a first child) and miraculous (for a child saddled with Microvillous Inclusion disease). But we've had a proper Spring (as opposed to Texas-style scorchers), a hospital-free school year and a successfully scaled-back birthday party.
Lucky for Ahn, she is so intent on doing everything that Bo does that even though we only read to her a fraction of the time we read to Bo at that age, she loves and craves reading, too. Everything he likes and does, she likes and does: reading, building LEGOs, trucks, and science. She is so convinced of his pure awesomeness that when we had to do a dressing change after their bath last night, she insisted she get a dressing, too.
Since we had an extra from the kit (which has adhesive that Bo is allergic to), I pretended to clean a spot on her chest and applied the Tegaderm. At first, I tried to distract her, then remove her from the room, but she was so insistant that she too get a dressing change. It was the only way to keep her from disturbing the sterile field around Bo. When both kids were done, and freshly dressed, Ahnnie's only complaint was that she wanted me to "paint" her belly, too. We only have so many betadine swabs, that due to the iodine, stain the skin yellow. It was hard convincing her that skipping that step was ok. It was even harder convincing her that we were not, in fact, going to "hook-up" fluids to her invisible central line. There was the briefest moment of grief; I silently sent up a prayer to all our friends who lost siblings to chronic illnesses, and prayed that our children would never know that day.
Tomorrow, Bo will go to his surgeon's office to have his line repaired. Please pray that it is as smooth and uneventful a procedure as we know it can be (it's literally a cut-paste job). And send a small prayer that neither child freaks out, and that both cooperate with JVC (he will have our home health nurse to help with Bo, but that means there will be that many more people crowded into the exam room).
For us, all that is expected from a 6 year old are all things that we consider novel (for a first child) and miraculous (for a child saddled with Microvillous Inclusion disease). But we've had a proper Spring (as opposed to Texas-style scorchers), a hospital-free school year and a successfully scaled-back birthday party.
Lucky for Ahn, she is so intent on doing everything that Bo does that even though we only read to her a fraction of the time we read to Bo at that age, she loves and craves reading, too. Everything he likes and does, she likes and does: reading, building LEGOs, trucks, and science. She is so convinced of his pure awesomeness that when we had to do a dressing change after their bath last night, she insisted she get a dressing, too.
Since we had an extra from the kit (which has adhesive that Bo is allergic to), I pretended to clean a spot on her chest and applied the Tegaderm. At first, I tried to distract her, then remove her from the room, but she was so insistant that she too get a dressing change. It was the only way to keep her from disturbing the sterile field around Bo. When both kids were done, and freshly dressed, Ahnnie's only complaint was that she wanted me to "paint" her belly, too. We only have so many betadine swabs, that due to the iodine, stain the skin yellow. It was hard convincing her that skipping that step was ok. It was even harder convincing her that we were not, in fact, going to "hook-up" fluids to her invisible central line. There was the briefest moment of grief; I silently sent up a prayer to all our friends who lost siblings to chronic illnesses, and prayed that our children would never know that day.
Tomorrow, Bo will go to his surgeon's office to have his line repaired. Please pray that it is as smooth and uneventful a procedure as we know it can be (it's literally a cut-paste job). And send a small prayer that neither child freaks out, and that both cooperate with JVC (he will have our home health nurse to help with Bo, but that means there will be that many more people crowded into the exam room).
Subscribe to:
Posts (Atom)