Sophee's battle with autoimmune
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Back on December 4, 2015 our daughter, Sophia, came to me (Kara) complaining of severe pain and trouble walking. We brought her into the ER. Labs and tests come back negative. She was sent home with pain medications.
December 7, 2015 again the severe pain and inability to walk we rush to the hospital after I had completed a night shift and Nelson had early bird hockey practice. She had some elevated labs and treated her with antibiotics and antivirals. Couple days later she was treated and discharged.
December 13, 2015 bam, severe pain and inability to walk again! Back to the ER we go and she was admitted to the hospital for the third time. This time they gave her the million dollar work up and still no diagnosis, no casue to what was happening. That's when the specialists began to get called in. Most tests came back normal there was no explaination. It was decided to biopsy the area where the pain was so severe. Pathololgy can sometimes find something a test cannot. A couple days after the biposy she felt better and was discharged.
Home for Christmas we all got what we wanted. So, life goes on we travel to Grand Rapids for Christmas have a wonderful time. Christmas break gets over and Sophee has finally caught up with her homework. Sophee goes back to school for finals all week. That Friday she came home said she wasn't feeling too well and went straight to bed. On January 17, 2016 there it was again all over severe pain, inability to walk, vomiting and a fever of 103.6. These symptoms keep developing more and more. Back to the ER for another admission. Again, nothing to an exact diagnosis but one thing is very clear now it's autoimmune and Bismarck is not equiped to handle this severe of a case. All the doctors (specialists too) sat Kent and I down explained they have been communicating with Mayo since her first admission and both hospitals decided her case is far too complex that she would be best treated at Mayo and transport will be taking her at 8am the next morning. Wow, that was fast it's 6pm and in 14 hours she will have to be transported by ambulance 9 hours away. We go home start doing laundry and packing like lunatics all while trying to make work adjustments and we have another child to not forget. It's decided Kent would stay home with Nelson I would go and my parents would meet me there. At exactly 8am the next morning Sophee's gone, in an ambulance by herself and I'm a sleep deprived, worried, running different scenarios in my head-mother driving by herself the 9 hours to Mayo.
It meant the world to me to have my parents there for me, to have that social support does something for the human psyche.
Sophee stayed a week and a half at Mayo with a diagnosis of "sometimes with medicine we can't pinpoint exactly the orgin of the cause but it is clearly some type of autoimmune disease that will go dormat". She was walking well with manageable pain so we went back home.
We're back home she stays home from school for a week due to being on narcotics. The less time she needed the narcotics the more she went to school. It got to the point where she only took a narcotic once a day. She got her license, kept working on missed school work and just became a teenager again, late nights and sleep overs.
We made trip to Mayo Clinic on the 19th and everything was looking really well. No concerns, no admission.
This past Sunday I get a call from Sophee I'm running a fever will you come pick me up? (She was at a friend's house for the night.) I pick her up she is shivering all over even being wrapped in a blanket. She looked at me and said, "We have 24-48 hours Mom until all those bad symptoms start agian".
Monday evening comes and sure enough the pain and trouble walking starts again. Off to the ER we go, admitted. Tuesday morning the doctor comes in does his examination and calls Mayo in our presence to speak with the doctor Sophee was seeing. Of course, the doctor was with patients so he left a message for her to call him it was regarding an "urgent patient". Sophee decides to take a nap so Kent and I go home. I'm hoping for a shower since I was a the hospital all night. We were expecting a transfer to Mayo so we were figuring the next day. At 1:30pm the doctor calls us and says he has arranged to transfer by personal car BUT we must be there by midnight. What??!!!!!! It was a wild rush. My heart broke when I told Sophee. She began to sob and said "all I want to do is say goodbye to my friends before I go". Like a good mother I was going to mkae that happen. Sophee got to say goodbye to her friends but we didn't make to Mayo until 2am for her direct admission.
We have health insurance but it will likely not cover everything needed to help her battle. Kent and I both work and have used up all of our vacation time in the last couple months. Sophee will likely need to be at Mayo for an undetermined amount of time. We would need to take time off of work and pay for any lodging/ food expenses while trying to keep up with all our current bills.
I don't know if making a goal of $15,000 is too much or not enough at this point. I just know that the care and treatment she will continue to need is going to be more than we can handle.
If you can help, our gratitude knows no bounds
December 7, 2015 again the severe pain and inability to walk we rush to the hospital after I had completed a night shift and Nelson had early bird hockey practice. She had some elevated labs and treated her with antibiotics and antivirals. Couple days later she was treated and discharged.
December 13, 2015 bam, severe pain and inability to walk again! Back to the ER we go and she was admitted to the hospital for the third time. This time they gave her the million dollar work up and still no diagnosis, no casue to what was happening. That's when the specialists began to get called in. Most tests came back normal there was no explaination. It was decided to biopsy the area where the pain was so severe. Pathololgy can sometimes find something a test cannot. A couple days after the biposy she felt better and was discharged.
Home for Christmas we all got what we wanted. So, life goes on we travel to Grand Rapids for Christmas have a wonderful time. Christmas break gets over and Sophee has finally caught up with her homework. Sophee goes back to school for finals all week. That Friday she came home said she wasn't feeling too well and went straight to bed. On January 17, 2016 there it was again all over severe pain, inability to walk, vomiting and a fever of 103.6. These symptoms keep developing more and more. Back to the ER for another admission. Again, nothing to an exact diagnosis but one thing is very clear now it's autoimmune and Bismarck is not equiped to handle this severe of a case. All the doctors (specialists too) sat Kent and I down explained they have been communicating with Mayo since her first admission and both hospitals decided her case is far too complex that she would be best treated at Mayo and transport will be taking her at 8am the next morning. Wow, that was fast it's 6pm and in 14 hours she will have to be transported by ambulance 9 hours away. We go home start doing laundry and packing like lunatics all while trying to make work adjustments and we have another child to not forget. It's decided Kent would stay home with Nelson I would go and my parents would meet me there. At exactly 8am the next morning Sophee's gone, in an ambulance by herself and I'm a sleep deprived, worried, running different scenarios in my head-mother driving by herself the 9 hours to Mayo.
It meant the world to me to have my parents there for me, to have that social support does something for the human psyche.
Sophee stayed a week and a half at Mayo with a diagnosis of "sometimes with medicine we can't pinpoint exactly the orgin of the cause but it is clearly some type of autoimmune disease that will go dormat". She was walking well with manageable pain so we went back home.
We're back home she stays home from school for a week due to being on narcotics. The less time she needed the narcotics the more she went to school. It got to the point where she only took a narcotic once a day. She got her license, kept working on missed school work and just became a teenager again, late nights and sleep overs.
We made trip to Mayo Clinic on the 19th and everything was looking really well. No concerns, no admission.
This past Sunday I get a call from Sophee I'm running a fever will you come pick me up? (She was at a friend's house for the night.) I pick her up she is shivering all over even being wrapped in a blanket. She looked at me and said, "We have 24-48 hours Mom until all those bad symptoms start agian".
Monday evening comes and sure enough the pain and trouble walking starts again. Off to the ER we go, admitted. Tuesday morning the doctor comes in does his examination and calls Mayo in our presence to speak with the doctor Sophee was seeing. Of course, the doctor was with patients so he left a message for her to call him it was regarding an "urgent patient". Sophee decides to take a nap so Kent and I go home. I'm hoping for a shower since I was a the hospital all night. We were expecting a transfer to Mayo so we were figuring the next day. At 1:30pm the doctor calls us and says he has arranged to transfer by personal car BUT we must be there by midnight. What??!!!!!! It was a wild rush. My heart broke when I told Sophee. She began to sob and said "all I want to do is say goodbye to my friends before I go". Like a good mother I was going to mkae that happen. Sophee got to say goodbye to her friends but we didn't make to Mayo until 2am for her direct admission.
We have health insurance but it will likely not cover everything needed to help her battle. Kent and I both work and have used up all of our vacation time in the last couple months. Sophee will likely need to be at Mayo for an undetermined amount of time. We would need to take time off of work and pay for any lodging/ food expenses while trying to keep up with all our current bills.
I don't know if making a goal of $15,000 is too much or not enough at this point. I just know that the care and treatment she will continue to need is going to be more than we can handle.
If you can help, our gratitude knows no bounds
Organizer
Kara Poppe
Organizer
Bismarck, ND