Lately I feel like I am being bombarded with the news of children losing their lives to T1D complications, and a T1D diagnosis coming too late!
These fears live and thrive within my mind 24/7. I know that my child's life is fragile and can be taken at any minute, this is the reason that we have a Diabetic Alert Dog, Insulin Pump, Dexcom CGM, and Nightscout. This is why my husband and I alternate nights sleeping with Joseph and rarely leave him out of our care, but I find myself asking the question......
Will it be enough?
Will all of our hard work and vigilance be enough to save our son's life?
I am afraid that it won't! You can do everything right and have the latest technology but Type 1 Diabetes doesn't care. A blood sugar can drop too quickly and he can have seizures that cause permanent damage or he can die. Just like that, any minute of any day it can happen. The dreaded little red box that we tote everywhere, might not be enough to save his life!
As a parent, how do you cope with that? How do you not let that fear creep in when you hear the stories about these children losing their lives so suddenly?
Just putting it in god's hands and hoping and praying that he is watching over him and protecting him? Praying for a miracle cure that hasn't come in the 94 years since the discovery of insulin?
94 years and we are still waiting!
I will never stop fighting for awareness and a cure, even if it isn't a "biological" cure. I NEED something that will prevent my son from dying, that will erase that fear and the horrible complications that lurk over our heads 24/7. I don't care if it is 1 pill a day, stem cell encapsulation....anything! I will take anything!
-until next time
Tuesday, February 3, 2015
Monday, January 26, 2015
Nosey Neighbor
A recent post to a well know column has me thinking......"what is wrong with our society"
You have a person sitting in a cubicle across from a diabetic, watching them check their blood sugar and watching them give injections of insulin. I would assume a normal person would look out of curiosity, wondering why they have to do those things, perhaps you would even ask so that you could gain some knowledge about your co-worker and their struggles. (at least that is what I would do)
I guess those are the days of the past. Since Joseph's diagnosis 2 years ago I have learned that in today's times people are more inclined to complain about the co-worker making THEM feel uncomfortable because they can see the person conducting medically necessary actions and they don't want to see it. As if the person sitting across from you stabbing themselves with needles to draw blood and inject life saving insulin enjoys the task and is purposely doing it out of spite.
What kind of people are we becoming? What happened to compassion and understanding? What happened to getting to know our co-workers and neighbors?
I feel like as a society we are becoming cold, judgmental, awful people. A person watching another person fighting for their life and putting their health as a priority only feels the selfish desire to make it go away because they don't want to see those things.
Disease exists and it isn't pretty! Rather than writing to a popular columnist with your selfish, outrageous complaint....why don't you try getting to know that co-worker and their story. Why don't you DONATE to a cure for your co-worker so that they no longer have to use needles to stay alive.
People with medical needs don't owe you anything. They are doing what they have to do to stay alive and they certainly shouldn't have to put your comfort as a priority above their own health. If you don't like what you are seeing and you can't find it in your heart to be grateful and thankful that you nor your child have to use those methods to stay alive, then I suggest you don't look and just worry about doing your job and being an awful person.
If you would like to view the Dear Abby post you can use this link Nosey Neighbor I have graciously renamed it to a more appropriate title ;)
-until next time
You have a person sitting in a cubicle across from a diabetic, watching them check their blood sugar and watching them give injections of insulin. I would assume a normal person would look out of curiosity, wondering why they have to do those things, perhaps you would even ask so that you could gain some knowledge about your co-worker and their struggles. (at least that is what I would do)
I guess those are the days of the past. Since Joseph's diagnosis 2 years ago I have learned that in today's times people are more inclined to complain about the co-worker making THEM feel uncomfortable because they can see the person conducting medically necessary actions and they don't want to see it. As if the person sitting across from you stabbing themselves with needles to draw blood and inject life saving insulin enjoys the task and is purposely doing it out of spite.
What kind of people are we becoming? What happened to compassion and understanding? What happened to getting to know our co-workers and neighbors?
I feel like as a society we are becoming cold, judgmental, awful people. A person watching another person fighting for their life and putting their health as a priority only feels the selfish desire to make it go away because they don't want to see those things.
Disease exists and it isn't pretty! Rather than writing to a popular columnist with your selfish, outrageous complaint....why don't you try getting to know that co-worker and their story. Why don't you DONATE to a cure for your co-worker so that they no longer have to use needles to stay alive.
People with medical needs don't owe you anything. They are doing what they have to do to stay alive and they certainly shouldn't have to put your comfort as a priority above their own health. If you don't like what you are seeing and you can't find it in your heart to be grateful and thankful that you nor your child have to use those methods to stay alive, then I suggest you don't look and just worry about doing your job and being an awful person.
If you would like to view the Dear Abby post you can use this link Nosey Neighbor I have graciously renamed it to a more appropriate title ;)
-until next time
Sunday, January 11, 2015
2 Years
2 years ago I was sitting at my house with a kid that had been misdiagnosed multiple times with the FLU. A deadly lurking disease that should have been diagnosed days earlier if a doctor at the ER wouldn't have cancelled the panel of tests that another concerned doctor ordered. A doctor that gave our son a Popsicle and sent us home with anti nausea medication. After the ER visit he was acting completely normal with the exception of a few new key symptoms that we had no idea the diagnosis that they were pointing towards.
Extreme Thirst and Frequent Urination. Symptoms that led me to call our pediatrician, on a Friday morning worried that there might be something else wrong that we were missing. Our pediatrician was out of town, so I had to call an on call office and speak with their nurse. She told me that he was just re hydrating from having the flu and not to worry unless it hadn't gotten better by Monday.
That evening a 7pm phone call changed our worry to fear! The on call physician was reviewing notes from the day while working his shift at the hospital and came across my phone call. He told Anthony that he was concerned that it could be DIABETES. That was the first time that we ever heard those awful words. He told us that after his shift was over at the hospital that he would open his office and just needed a quick urine sample to test. This wasn't difficult to get since he was urinating constantly.
We loaded up and headed to a doctor's office that we have never been to, to meet with a pediatrician that we have never seen. We walked into the office and handed him the urine sample. We had an unused cup from the ER visit. The doctor walked back into the room with a look on his face that I will never forget and he uttered the words " it was VERY positive". After those words came out of his mouth our world shattered into a million pieces.
He tried to explain that this wasn't a death sentence, that we would need to make arrangements for Ethan because we were going to have to spend a few days in the hospital learning to care for Joseph's new medical needs. He called ahead to the hospital so that we wouldn't have to wait in the ER.
I cried as soon as we got to the car and Joseph couldn't see me. We placed calls to our family to let them know of the diagnosis and that we would be headed to the hospital. We still had NO CLUE exactly what diabetes meant for Joseph.
We arrived at the hospital and got assigned to our room. They came in to do his first blood sugar check. The nurses were in shock, his blood sugar was only in the mid 400's. They said that was an unheard of number for a newly diagnosed Type 1 Diabetic. Joseph didn't need an IV, he didn't have to go to the ICU, all he needed was his first shot of insulin. That on call pediatrician could have saved Joseph's life and we will never forget what he did for him and his diligence to his work. We are also very lucky that we didn't give Joseph juice or high carb foods. His blood sugar would have been so much higher and his life could have been in serious danger.
The next few days were a nightmare. Sadness, fear, and an overwhelming amount of information was given to us. Essentially we had 2 days to learn how to keep our son alive before we were sent home with a bag of supplies and a completely new life for all of us.
2 years ago my son's innocence and freedom were stolen away from him. While we have made great strides in re-gaining our life as we once knew it, some thing's will never be the same. We have watched our son cry, scream, fight and be scared. We have seen him struggle and be different. We strive to give him a normal life and we strive to teach him to never let diabetes hold him back but there are aspects of this life that we can't control.
Today is a bittersweet day. While I am very sad, I am also very proud. We are not letting diabetes win this war. We will keep fighting for Joseph's life until we have a cure.
So today we celebrate how far we have come and another year of success!
-until next time
 |
| At the ER waiting for answers |
Extreme Thirst and Frequent Urination. Symptoms that led me to call our pediatrician, on a Friday morning worried that there might be something else wrong that we were missing. Our pediatrician was out of town, so I had to call an on call office and speak with their nurse. She told me that he was just re hydrating from having the flu and not to worry unless it hadn't gotten better by Monday.
That evening a 7pm phone call changed our worry to fear! The on call physician was reviewing notes from the day while working his shift at the hospital and came across my phone call. He told Anthony that he was concerned that it could be DIABETES. That was the first time that we ever heard those awful words. He told us that after his shift was over at the hospital that he would open his office and just needed a quick urine sample to test. This wasn't difficult to get since he was urinating constantly.
We loaded up and headed to a doctor's office that we have never been to, to meet with a pediatrician that we have never seen. We walked into the office and handed him the urine sample. We had an unused cup from the ER visit. The doctor walked back into the room with a look on his face that I will never forget and he uttered the words " it was VERY positive". After those words came out of his mouth our world shattered into a million pieces.
He tried to explain that this wasn't a death sentence, that we would need to make arrangements for Ethan because we were going to have to spend a few days in the hospital learning to care for Joseph's new medical needs. He called ahead to the hospital so that we wouldn't have to wait in the ER.
I cried as soon as we got to the car and Joseph couldn't see me. We placed calls to our family to let them know of the diagnosis and that we would be headed to the hospital. We still had NO CLUE exactly what diabetes meant for Joseph.
We arrived at the hospital and got assigned to our room. They came in to do his first blood sugar check. The nurses were in shock, his blood sugar was only in the mid 400's. They said that was an unheard of number for a newly diagnosed Type 1 Diabetic. Joseph didn't need an IV, he didn't have to go to the ICU, all he needed was his first shot of insulin. That on call pediatrician could have saved Joseph's life and we will never forget what he did for him and his diligence to his work. We are also very lucky that we didn't give Joseph juice or high carb foods. His blood sugar would have been so much higher and his life could have been in serious danger.
 | ||
His first meal as a diabetic
 |
Today is a bittersweet day. While I am very sad, I am also very proud. We are not letting diabetes win this war. We will keep fighting for Joseph's life until we have a cure.
So today we celebrate how far we have come and another year of success!
Friday, January 9, 2015
Cold and Flu Season
Man, this has been a rough month for our household!
The first week of December we took a family vacation to Disneyland and as usual the kids got sick....I mean, Disneyland has to be the germiest (yup it's a word LOL) place in the world. We use bottle after bottle of hand sanitizer, in line, after ride, just because and it is just never good enough to fight off the germs in kids their age! They are touching everything and putting their hands in their mouths constantly......so they in turn caught a stomach bug.
We get through the stomach bug and they catch a cold.....right before Christmas! Every. Single. Year. my kids are sick at Christmas, it's almost a right of passage! So, we get them on antibiotics and get them over the cold.
Days after they are better guess what, it's time for Joseph to go back to school......cue ANOTHER cold and an ear infection for Joseph. Last night of course Ethan started symptoms!
December-sick
January- sick
This is wrecking havoc on Joseph's blood sugar and has me wishing that it was just summer already!
A cold or illness is bad enough for a "normal" child, but when you throw T1D in the mix it becomes a totally different ball game. We have to worry about blood sugar levels, ketones, forcing him to eat, being up ALL night, staying hydrated and the list goes on.
I am hoping that we have now paid our Cold and Flu Season dues and the rest of the year will be smooth sailing.......there's always hope, right????
-until next time
Monday, December 22, 2014
" I just want diabetes to be over"
After taking an unintentional month hiatus from blogging, I am back!
It has been pretty much the norm around here this past month. Ups and Downs and a disappointing A1C from our endo visit last month. It only went up .2 due to post surgery high blood sugars, but it is still frustrating considering how hard we work. Our endo didn't mind the increase at all, I just tend to be harder on myself because I know just what is at stake.......Joseph's future health and LIFE!
We are creeping up on Joseph's 2nd Diaversary (anniversary of his diagnosis) and I can't help but feel sadness thinking of past Christmas and how differently we viewed the world. The other day we pulled up old video footage of Joseph and it broke my heart to know that he would never be that careFREE kid that he once used to be, now at the age of 5 he has more responsibility then most twice his age. Take your meter, grab your CGM, we need to check your finger, come here so I can tape your pump, let me weigh that banana before you eat it etc. etc. Don't get me wrong he is still a happy kid, things are just different.
The other night we were sitting at dinner and Joseph asked me if he could take off his medical alert bracelet. I of course told him "NO" and then explained that it was very important for him to wear it in case of an emergency so the paramedics and doctors would know that he needed special medical treatment. Then he said the words I have been dreading " Mom, I don't want to have Type 1 Diabetes anymore" my heart sank, a lump formed in my throat and I held back tears. I responded by explaining to him that we were working hard with JDRF to raise the money for a cure so that he didn't have Type 1 Diabetes anymore. He just looked at me and said " I just want diabetes to be over" I just looked at him and said " I know buddy, I know, me too!" Then I tried to hold myself together because had we not been in a public place, I would have excused myself and went into a room and cried.
I want diabetes to be over too, I want my son to be free. I don't want this life for him or our family. Why did this happen? Why couldn't it have been something that could be fixed, cured or taken out? Why does he have to live the rest of his life with this burden? Why do I have to put all of our hope, prayers and faith into the bucket labeled "unknown"?
This is the time of year to be grateful and I am don't get me wrong. We are very blessed in our life but I am not grateful for Type 1 Diabetes...........I want it to be over!
-until next time
It has been pretty much the norm around here this past month. Ups and Downs and a disappointing A1C from our endo visit last month. It only went up .2 due to post surgery high blood sugars, but it is still frustrating considering how hard we work. Our endo didn't mind the increase at all, I just tend to be harder on myself because I know just what is at stake.......Joseph's future health and LIFE!
We are creeping up on Joseph's 2nd Diaversary (anniversary of his diagnosis) and I can't help but feel sadness thinking of past Christmas and how differently we viewed the world. The other day we pulled up old video footage of Joseph and it broke my heart to know that he would never be that careFREE kid that he once used to be, now at the age of 5 he has more responsibility then most twice his age. Take your meter, grab your CGM, we need to check your finger, come here so I can tape your pump, let me weigh that banana before you eat it etc. etc. Don't get me wrong he is still a happy kid, things are just different.
The other night we were sitting at dinner and Joseph asked me if he could take off his medical alert bracelet. I of course told him "NO" and then explained that it was very important for him to wear it in case of an emergency so the paramedics and doctors would know that he needed special medical treatment. Then he said the words I have been dreading " Mom, I don't want to have Type 1 Diabetes anymore" my heart sank, a lump formed in my throat and I held back tears. I responded by explaining to him that we were working hard with JDRF to raise the money for a cure so that he didn't have Type 1 Diabetes anymore. He just looked at me and said " I just want diabetes to be over" I just looked at him and said " I know buddy, I know, me too!" Then I tried to hold myself together because had we not been in a public place, I would have excused myself and went into a room and cried.
I want diabetes to be over too, I want my son to be free. I don't want this life for him or our family. Why did this happen? Why couldn't it have been something that could be fixed, cured or taken out? Why does he have to live the rest of his life with this burden? Why do I have to put all of our hope, prayers and faith into the bucket labeled "unknown"?
This is the time of year to be grateful and I am don't get me wrong. We are very blessed in our life but I am not grateful for Type 1 Diabetes...........I want it to be over!
-until next time
Friday, November 7, 2014
Life after surgery
Sorry for the delay in an update it has been a little crazy around here since Joseph's surgery on Wednesday morning.
Surgery went well despite a few hiccups with Nightscout and Dexcom not cooperating during the surgery and leaving us completely in the dark. Joseph did drop a little low during his surgery and they had to give him a bag of Dextrose to raise his blood sugar. The waking from anesthesia was pretty typical for a young child, he was pretty hysterical and out of it but once it wore off he was fine, no nausea and no vomiting YAY!
Joseph shocked us all when he started requesting to eat right away! This was the main reason that we decided to have him admitted for a night of observation. This boy is beyond tough and truly inspires us with his continued strength and resilience despite what life is throwing at him.
Joseph's recovery is going well and pretty smoothly, with the exception of his blood sugar. His pain medication with both a sugar and alcohol content, plus a healing distressed body are causing some seriously stubborn blood sugars!! Joseph's normal daily insulin intake ranges from 15-20 units and yesterday we gave him 33 units and still couldn't keep him below 200! We have increased basal, changed his correction factor and are giving bolus after bolus and we are still struggling. Diabetes has a mind of it's own and no matter how hard we work, we are never in control of the outcome. We are continuing to fight to bring him back into a more consistent range, but right now it just feels like a losing battle. You feel terrible as a parent that in addition to not feeling well because of surgery that now you are causing him to not feel well because you can't manage to bring down high blood sugars!
This disease is ruthless and frustrating, you can do everything you are supposed to do and it still isn't enough! You have no choice but to keep pushing through and fighting. We won't give up and we will get those numbers back where they belong, no matter what it takes.
Keep saying your prayers and keeping Joseph in your thoughts for a speedy and healthy recovery!
-until next time
Surgery went well despite a few hiccups with Nightscout and Dexcom not cooperating during the surgery and leaving us completely in the dark. Joseph did drop a little low during his surgery and they had to give him a bag of Dextrose to raise his blood sugar. The waking from anesthesia was pretty typical for a young child, he was pretty hysterical and out of it but once it wore off he was fine, no nausea and no vomiting YAY!
Joseph shocked us all when he started requesting to eat right away! This was the main reason that we decided to have him admitted for a night of observation. This boy is beyond tough and truly inspires us with his continued strength and resilience despite what life is throwing at him.
Joseph's recovery is going well and pretty smoothly, with the exception of his blood sugar. His pain medication with both a sugar and alcohol content, plus a healing distressed body are causing some seriously stubborn blood sugars!! Joseph's normal daily insulin intake ranges from 15-20 units and yesterday we gave him 33 units and still couldn't keep him below 200! We have increased basal, changed his correction factor and are giving bolus after bolus and we are still struggling. Diabetes has a mind of it's own and no matter how hard we work, we are never in control of the outcome. We are continuing to fight to bring him back into a more consistent range, but right now it just feels like a losing battle. You feel terrible as a parent that in addition to not feeling well because of surgery that now you are causing him to not feel well because you can't manage to bring down high blood sugars!
This disease is ruthless and frustrating, you can do everything you are supposed to do and it still isn't enough! You have no choice but to keep pushing through and fighting. We won't give up and we will get those numbers back where they belong, no matter what it takes.
Keep saying your prayers and keeping Joseph in your thoughts for a speedy and healthy recovery!
-until next time
Monday, November 3, 2014
Surgery is Approaching
We are two days away from Joseph's surgery to remove his tonsils and panic and fear have started to creep into my mind.
As I mentioned in my previous post This is not routine we are having Joseph's surgery at the hospital where he was treated after his Type 1 Diabetes diagnosis. We are erring on the side of caution should he have any complications due to anesthesia or the refusal to eat or drink after surgery.
Joseph has never been put under anesthesia so we do not know how his blood sugar will react and even if it reacts well we have the hurdle of getting him to eat and drink post surgery to keep his blood sugars "controlled".
Just today the decision was made between Joseph's surgeon and his Endocrinologist to go ahead and plan to admit Joseph for at least one night post surgery to keep a close eye on his recovery and stability. This helps to put my mind at ease knowing that they are taking surgery and Type 1 Diabetes seriously.
If we were to have his surgery at an outpatient clinic with people who weren't familiar with the disease or it's complications then we could be in for a world of trouble. If Joseph comes out of surgery normally and is sent home like a patient normally is and he begins refusing to eat or drink then we have no way to raise a low blood sugar if the need arises and that can lead to a life threatening situation very quickly. If he is admitted into the hospital then they can help control his blood sugar with IV treatments and make sure that his body is staying hydrated if needed.
This is not an ideal or easy situation but preparing for the worst case scenario is what we have to do when life involves Type 1 Diabetes. We never know what diabetes is going to do next, but if we try our best to stay one step ahead, then we can try to maintain the upper hand and prevent the worst from happening.
Please keep Joseph in your prayers as Wednesday approaches and I will be sure to update how his surgery went once I know any information.
Thank You!
-until next time
As I mentioned in my previous post This is not routine we are having Joseph's surgery at the hospital where he was treated after his Type 1 Diabetes diagnosis. We are erring on the side of caution should he have any complications due to anesthesia or the refusal to eat or drink after surgery.
Joseph has never been put under anesthesia so we do not know how his blood sugar will react and even if it reacts well we have the hurdle of getting him to eat and drink post surgery to keep his blood sugars "controlled".
Just today the decision was made between Joseph's surgeon and his Endocrinologist to go ahead and plan to admit Joseph for at least one night post surgery to keep a close eye on his recovery and stability. This helps to put my mind at ease knowing that they are taking surgery and Type 1 Diabetes seriously.
If we were to have his surgery at an outpatient clinic with people who weren't familiar with the disease or it's complications then we could be in for a world of trouble. If Joseph comes out of surgery normally and is sent home like a patient normally is and he begins refusing to eat or drink then we have no way to raise a low blood sugar if the need arises and that can lead to a life threatening situation very quickly. If he is admitted into the hospital then they can help control his blood sugar with IV treatments and make sure that his body is staying hydrated if needed.
This is not an ideal or easy situation but preparing for the worst case scenario is what we have to do when life involves Type 1 Diabetes. We never know what diabetes is going to do next, but if we try our best to stay one step ahead, then we can try to maintain the upper hand and prevent the worst from happening.
Please keep Joseph in your prayers as Wednesday approaches and I will be sure to update how his surgery went once I know any information.
Thank You!
-until next time
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