With all of the hard and crappy things our family has had to deal with some times it's hard to see the sunshine in it all. Tami took Mackinley to the grocery store tonight while I finished making our lasagna and I had a few free minutes after...what did I do? My eyes fell upon the refrigerator and I realized I LOVE having those silly letters and numbers magnets stuck to it.
While we were eating dinner I kind of put my head in my hands out of emotional exhaustion from the day, Tami looked at me and said "are you having one of those 'I wish I never had a kid days?'". I looked at her and said no, because I realize we have it tougher than most but I would never give up the magnets or the spoons all over or the millions of sippy cups.
So here is my list:
Magnets on the fridge
Baby spoons under foot
4 sippy cups all sitting on his table 1/2 full of water
Tiny socks that have lost their mate
Bubbles with no bubble wands because Mac stole them to chew on
Busy Ball Popper with a binkie blocking the air way
Ripped up kleenex all over the floor
Itty bitty flip flops for summer
Rubber balls in the garden
Books from one end of his room to the other
And best of all...kisses accompanied by the sound of "mmmmmmmm"
I had a rough day today but it's all part of life and our life is good.
Monday, June 27, 2011
Wednesday, June 15, 2011
We've been here before, but we've never gone this far.
Where have we been? What have we been doing? Sheesh, what haven't we been doing?!
On May 31st we had the scariest day of our lives. Mackinley didn't want to wake up from his 15 hour "nap", so at 11am I finally went in and got him out of bed. He seemed kind of chilly all over and it seemed odd to me because his forehead always feels a little warm to me. He was like refrigerated baby in my arms.
I got him his usual breakfast, a 6oz bottle with Carnation Instant Breakfast, and he ate it just fine and wanted more. I made another 8oz of milk and he DOWNED it...something he has never done before, especially after just eating a fortified 6oz. I set him down and he stumbled around like he was still waking up but it didn't seem right to me. He asked for a fruit pouch and sucked that down too. The part that really didn't seem right to me was that he just slumped in my lap, he didn't want down and he didn't ask me to put Mickey Mouse on the television. I laid him down to change his diaper and saw that his lips were purple and he was so stiff. He was breathing just fine but started shaking and his eyes were pleading with me, as if asking what was wrong.
After 5 seconds of contemplating what might be going on I called Tami and asked her to come home from work. I'm sure I scared the crap out of her and looking back I'm glad I did. After hanging up the phone I tested Mac's blood sugar and the number that came up seized my heart...32. Our "danger zone" number is 60, anything close to or below 60 and we high tail it to the ER. Tami calls me back and says "you need to call 911" and then continues to talk over me. I scream into the phone "his blood sugar is 32, meet me at the hospital!!!". I call 911 and the woman couldn't understand a word I said, talk about frustrating. Finally I got across that Mackinley was 20 months old and was about to go into a coma or have a seizure due to his medical condition.
The next 2 minutes lasted a LIFE TIME. I could hear sirens all over and none of them were on my street. I grabbed my keys and wallet and the diaper bag and Mac and I ran out the door. The firemen that just arrived were casually getting out of their big red truck and meandering toward our house so I managed to squeak out "please help my baby". Now I am sobbing at this point and Mackinley is just slumped on my shoulder. They took us back inside the house and started asking me a million questions...all I remember was showing them his emergency shot and asking for help. No one helped me.
Let me fill you in on this, every medical person you encounter automatically assumes someone with low blood sugar can be magically saved with some juice. I can't even tell you how wrong they are.
The aide car arrived and NO ONE HELPED ME. The aide car left and while I waited with the firemen they tried to entertain my dying baby with a ride in their firetruck and a stuffed animal. I'm not sure if they really didn't understand or if they were trying to calm me down. Finally the ambulance arrived and they loaded us up on a stretcher and we were off to Swedish. I must have pumped Mac full of enough carbs to just raise his blood sugar a few numbers and he could lift his head, a much needed sign of life for me.
Usually in these situations we have already called Mackinley's endocrinologist and he has called the ER so they are ready for a "true emergency" by the time we get there and they don't stall us for petty things like our insurance card. We didn't have time so it was going to be a crap shoot as to whether or not they would remember us, sad I know. Tami met us as we were getting out of the ambulance and she burst into tears...now we were both a sobbing mess and Mackinley was dying.
Over the next 30 minutes they took his temp (a scary 95 degrees), tried to get an IV line in (he couldn't even open his eyes let alone cry) and FINALLY pushed in his emergency dose of Cortef. In the next hour Mac's temp went up to 101 and he could open his eyes and I think he knew we were there. I had spent a good part of that hour sobbing "please don't leave us, mama is right here...open your eyes, please". It was a nightmare that didn't want to let go. When someone stabs your infant with a needle and fishes around for 5 minutes and they don't even flinch, something is wrong. One doctor ordered a chest xray, another one cancelled it...one nurse got a blood sugar of "below 25", another got 68. I'm pretty sure we were stuck in a vortex of opinions, not sciences.
We were finally admitted to the PICU and Mackinley slept for hours. He received fluids and emergency doses of cortisol and even watched a little Mickey Mouse. And just over 24 hours later it was all over, we were free to go home.
Mackinley has been so close to death more times that most people will see in a 100 year life time. He has overcome needles and incompetent nurses and catheters and surgery...and he is not even 2 years old. No one will ever understand what any of have been through, no one. It is a very lonely place to be.
I have met 2 people who have an insight into what we have gone through, and they have gone through much of their own that I will never understand, but still...they don't understand. It's not that they don't sympathize to understand or know the process of what we have gone through step by step, but until you are there you will never, ever understand what it is like to be in my shoes. I get sad wishing I had a friend who lived down the street and could say "I totally understand" and actually mean it. No one understands the panic, the stress, the monetary commitment, the feeling that you will always be dealing with this and of course the never ending love for a baby who could be gone in a moment. I dream of someone who will let me cry on their shoulder and cry with me because they get it...I always appreciate the kind words and best wishes for Mackinley - they help more than anyone will ever know.
Hug your babies and feel blessed...I know I do.
On May 31st we had the scariest day of our lives. Mackinley didn't want to wake up from his 15 hour "nap", so at 11am I finally went in and got him out of bed. He seemed kind of chilly all over and it seemed odd to me because his forehead always feels a little warm to me. He was like refrigerated baby in my arms.
I got him his usual breakfast, a 6oz bottle with Carnation Instant Breakfast, and he ate it just fine and wanted more. I made another 8oz of milk and he DOWNED it...something he has never done before, especially after just eating a fortified 6oz. I set him down and he stumbled around like he was still waking up but it didn't seem right to me. He asked for a fruit pouch and sucked that down too. The part that really didn't seem right to me was that he just slumped in my lap, he didn't want down and he didn't ask me to put Mickey Mouse on the television. I laid him down to change his diaper and saw that his lips were purple and he was so stiff. He was breathing just fine but started shaking and his eyes were pleading with me, as if asking what was wrong.
After 5 seconds of contemplating what might be going on I called Tami and asked her to come home from work. I'm sure I scared the crap out of her and looking back I'm glad I did. After hanging up the phone I tested Mac's blood sugar and the number that came up seized my heart...32. Our "danger zone" number is 60, anything close to or below 60 and we high tail it to the ER. Tami calls me back and says "you need to call 911" and then continues to talk over me. I scream into the phone "his blood sugar is 32, meet me at the hospital!!!". I call 911 and the woman couldn't understand a word I said, talk about frustrating. Finally I got across that Mackinley was 20 months old and was about to go into a coma or have a seizure due to his medical condition.
The next 2 minutes lasted a LIFE TIME. I could hear sirens all over and none of them were on my street. I grabbed my keys and wallet and the diaper bag and Mac and I ran out the door. The firemen that just arrived were casually getting out of their big red truck and meandering toward our house so I managed to squeak out "please help my baby". Now I am sobbing at this point and Mackinley is just slumped on my shoulder. They took us back inside the house and started asking me a million questions...all I remember was showing them his emergency shot and asking for help. No one helped me.
Let me fill you in on this, every medical person you encounter automatically assumes someone with low blood sugar can be magically saved with some juice. I can't even tell you how wrong they are.
The aide car arrived and NO ONE HELPED ME. The aide car left and while I waited with the firemen they tried to entertain my dying baby with a ride in their firetruck and a stuffed animal. I'm not sure if they really didn't understand or if they were trying to calm me down. Finally the ambulance arrived and they loaded us up on a stretcher and we were off to Swedish. I must have pumped Mac full of enough carbs to just raise his blood sugar a few numbers and he could lift his head, a much needed sign of life for me.
Usually in these situations we have already called Mackinley's endocrinologist and he has called the ER so they are ready for a "true emergency" by the time we get there and they don't stall us for petty things like our insurance card. We didn't have time so it was going to be a crap shoot as to whether or not they would remember us, sad I know. Tami met us as we were getting out of the ambulance and she burst into tears...now we were both a sobbing mess and Mackinley was dying.
Over the next 30 minutes they took his temp (a scary 95 degrees), tried to get an IV line in (he couldn't even open his eyes let alone cry) and FINALLY pushed in his emergency dose of Cortef. In the next hour Mac's temp went up to 101 and he could open his eyes and I think he knew we were there. I had spent a good part of that hour sobbing "please don't leave us, mama is right here...open your eyes, please". It was a nightmare that didn't want to let go. When someone stabs your infant with a needle and fishes around for 5 minutes and they don't even flinch, something is wrong. One doctor ordered a chest xray, another one cancelled it...one nurse got a blood sugar of "below 25", another got 68. I'm pretty sure we were stuck in a vortex of opinions, not sciences.
We were finally admitted to the PICU and Mackinley slept for hours. He received fluids and emergency doses of cortisol and even watched a little Mickey Mouse. And just over 24 hours later it was all over, we were free to go home.
Mackinley has been so close to death more times that most people will see in a 100 year life time. He has overcome needles and incompetent nurses and catheters and surgery...and he is not even 2 years old. No one will ever understand what any of have been through, no one. It is a very lonely place to be.
I have met 2 people who have an insight into what we have gone through, and they have gone through much of their own that I will never understand, but still...they don't understand. It's not that they don't sympathize to understand or know the process of what we have gone through step by step, but until you are there you will never, ever understand what it is like to be in my shoes. I get sad wishing I had a friend who lived down the street and could say "I totally understand" and actually mean it. No one understands the panic, the stress, the monetary commitment, the feeling that you will always be dealing with this and of course the never ending love for a baby who could be gone in a moment. I dream of someone who will let me cry on their shoulder and cry with me because they get it...I always appreciate the kind words and best wishes for Mackinley - they help more than anyone will ever know.
Hug your babies and feel blessed...I know I do.
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