Three Pictures One Shirt
I've been published by The Mighty a few times and they sent out these amazingly soft shirts with their logo to their contributors to say thank you!
I've been published by The Mighty a few times and they sent out these amazingly soft shirts with their logo to their contributors to say thank you!
The first picture was taken on March 12th 2016, why do I know this exact date?
This is the date that marks a new chapter in Finn's story. On this day he woke up itchy and had a few hives, called our pediatrician brought him in to be checked out. Gave him some benadryl after our appointment things were ok. We got home I checked the mail and saw a package for me, eagerly opening it I saw it was my shirt so of course I changed into it and took a selfie! I heard blood curdling screams coming from Finn's bedroom. The hair stood up on the back of my neck walking upstairs not sure what I was going to find. What I found was my son on the floor in pain with hives all over him. I got him in the tub called the pediatrician tried to give him more benadryl he threw it up started coughing and clawing at his throat. I loaded him in the car and started driving. I sat in the waiting room as I watched more hives grow all over his hands. They tried giving him more oral benadryl he did the same thing vomited it up. The next step was injections of benadryl and prednisone the hives slowed, but within the hour returned. Finally they said we are giving him epinephrine. I thought this is going to work my boy can get some relief from the pain and itching. They administered the epi and within 2 hours the hives returned. The doctors kept saying that it should have worked that they were not sure why he wasn't responding to treatment. The supervising doctor in the Emergency room said we are going to give him another round of epi if this doesn't work then you are being admitted. They administered his second round and gave him oral medications of benadryl, atarax, prednisone and zantac. Finally the hives slowed, the swelling receded and the panic calmed. It was almost 4:00 Sunday morning when we were finally admitted. He was sleeping peacefully, I sat and watched every breath and spot that was left on him to see if it would grow and start this whole traumatic cycle all over again.
March 13th 2016 is when the second picture was taken another selfie, a picture of a Momma who wasn't feeling so mighty, a Momma who was tired and frustrated at the lack of wanting to find out what caused this crazy reaction, a Momma who realized that because he couldn't tell the doctors what was going on and because he wasn't cooperating because he didn't understand what was happening, he was dismissed, a Momma who was so tired from no sleep and running on straight adrenaline, caffeine, frustration and worry, a Momma of an autistic son who is nonverbal that has had to decode every gesture and movement since this all started and translate it all to the doctors and nurses, praying that they understood. They didn't though and no one wanted to look closer they treated the symptoms and sent him on his way...
This Momma felt like a failure, that her voice was broken and she couldn't articulate properly or effectively to help Finn and when she did it fell upon deaf ears. She was sad and heartbroken for months trying to doctor after doctor to listen.
I can't tell you the date of the third picture, but this is Momma who has advocated for her son who deserves to be treated like every other kid; honestly he should be observed closer because he isn't verbal, not ignored. She has read more medical research papers; tracked symptoms, foods and poop cycles or lack thereof of and documented everything. She has a file on her phone with photos, videos and all labs. This third picture is the Momma who has fought and she is continuing to fight for Finn to get the care he needs and deserves, a Momma who finally got into doctors willing to listen and not ignore Finn because he couldn't verbally communicate, doctors who said she is his best advocate and keep doing what she's doing, doctors who are willing to learn along with her and who are honest when saying that Finn is a complex case and is beyond the scope of what they know. Doctors who have given a name to the the symptoms; Mast Cell Activation Disease a rare disease.
The first picture was taken on March 12th 2016, why do I know this exact date?
This is the date that marks a new chapter in Finn's story. On this day he woke up itchy and had a few hives, called our pediatrician brought him in to be checked out. Gave him some benadryl after our appointment things were ok. We got home I checked the mail and saw a package for me, eagerly opening it I saw it was my shirt so of course I changed into it and took a selfie! I heard blood curdling screams coming from Finn's bedroom. The hair stood up on the back of my neck walking upstairs not sure what I was going to find. What I found was my son on the floor in pain with hives all over him. I got him in the tub called the pediatrician tried to give him more benadryl he threw it up started coughing and clawing at his throat. I loaded him in the car and started driving. I sat in the waiting room as I watched more hives grow all over his hands. They tried giving him more oral benadryl he did the same thing vomited it up. The next step was injections of benadryl and prednisone the hives slowed, but within the hour returned. Finally they said we are giving him epinephrine. I thought this is going to work my boy can get some relief from the pain and itching. They administered the epi and within 2 hours the hives returned. The doctors kept saying that it should have worked that they were not sure why he wasn't responding to treatment. The supervising doctor in the Emergency room said we are going to give him another round of epi if this doesn't work then you are being admitted. They administered his second round and gave him oral medications of benadryl, atarax, prednisone and zantac. Finally the hives slowed, the swelling receded and the panic calmed. It was almost 4:00 Sunday morning when we were finally admitted. He was sleeping peacefully, I sat and watched every breath and spot that was left on him to see if it would grow and start this whole traumatic cycle all over again.
March 13th 2016 is when the second picture was taken another selfie, a picture of a Momma who wasn't feeling so mighty, a Momma who was tired and frustrated at the lack of wanting to find out what caused this crazy reaction, a Momma who realized that because he couldn't tell the doctors what was going on and because he wasn't cooperating because he didn't understand what was happening, he was dismissed, a Momma who was so tired from no sleep and running on straight adrenaline, caffeine, frustration and worry, a Momma of an autistic son who is nonverbal that has had to decode every gesture and movement since this all started and translate it all to the doctors and nurses, praying that they understood. They didn't though and no one wanted to look closer they treated the symptoms and sent him on his way...
This Momma felt like a failure, that her voice was broken and she couldn't articulate properly or effectively to help Finn and when she did it fell upon deaf ears. She was sad and heartbroken for months trying to doctor after doctor to listen.
I can't tell you the date of the third picture, but this is Momma who has advocated for her son who deserves to be treated like every other kid; honestly he should be observed closer because he isn't verbal, not ignored. She has read more medical research papers; tracked symptoms, foods and poop cycles or lack thereof of and documented everything. She has a file on her phone with photos, videos and all labs. This third picture is the Momma who has fought and she is continuing to fight for Finn to get the care he needs and deserves, a Momma who finally got into doctors willing to listen and not ignore Finn because he couldn't verbally communicate, doctors who said she is his best advocate and keep doing what she's doing, doctors who are willing to learn along with her and who are honest when saying that Finn is a complex case and is beyond the scope of what they know. Doctors who have given a name to the the symptoms; Mast Cell Activation Disease a rare disease.
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