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Sunday, March 2, 2014

Colton's Full Story

When we took Colton to the ER in August of 2013, we had no idea how much our lives were about to change. Colton had been acting lethargic the day before and his color looked pale. We had taken him to Instacare where we were sent home and told to just watch him.  The next day we ended up at Primary's ER and Colton was diagnosed at the time with auto immune hemolytic anemia and required a blood transfusion. After several days in the hospital, Colton's hemoglobin counts were high enough to go home, but he was required to have his blood tested once a week to make sure his body was accepting the new blood and to ensure his counts remained stable.  As the weeks went by it looked like Colton was recovering well and we welcomed his little brother into the family and celebrated his 2nd birthday. As we continued to have his blood tested into October, his platelet count slowly started to decline.   Colton was subsequently diagnosed with idiopathic thrombocytopenia (ITP) which we continued to monitor over the next couple of months.  The doctors hoped that his platelets would recover on their own over time and tried treating him with steroids, however his counts continued to go down.  In December, his counts dropped acutely; down to critical levels. On December 23rd we noticed bruises all over Colton's body and, when tested, his counts had dropped to seven. They dropped to less than one after Christmas. 

On January 2, 2014, we came very close to losing Colton.  After New Year's, Colton caught the flu virus which caused him to throw up and rupture the lining of his stomach. The rupture caused severe life threating bleeding in his GI tract due to the low level of platelets and his body's inability to stop the bleeding.  Colton spent the next week in the PICU and ICS units at Primary Children's Medical Center, where he received several platelet transfusions,  a blood transfusion, plasma transfusion and IVIG therapy along with many other medications to stabilize him. He was put under twice during his stay, once to place a central line into his jugular and once to scope his stomach to assess the severity of the rupture.  After a week, Colton was stable enough that we were released.  His platelet counts were still low, but his white and red cells were high enough that he was able to come home and recover in the comfort of his home. Colton continued to have his blood taken once a week and on February 18th his white blood cells started to drop. This has resulted in a potential new diagnoses of Evan's Syndrome. Evan's Syndrome, a very serious and rare autoimmune disorder, is very hard to predict and very hard to treat because it can affect any blood cell line at any time or even multiple lines at the same time. It is not uncommon for children to have one cell line down at a time, but it's extremely rare to have multiple lines down at the same time, which Colton has.  In addition, most cases respond to steroid treatment or IVIG therapy, neither of which have helped Colton.  Although we are grateful that he does not have cancer, Evan's Syndrome is treated in much the same way and Colton is seen by the hematology and oncology doctors at Primary's.  Colton has a very long and hard road ahead of him, but he has proven many times how strong he is and how much enthusiasm he has for LIFE. Please help us show Colton how much love and support he has as he continues to fight this battle.

3 comments:

  1. Colton is such a strong boy and he is very lucky to have such an awesome mommy and daddy. I feel so grateful to have you all in my life! I love you ho, and hope you know I'm always sending good vibes your way ��. They will start working one day I know it! Love you!

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  2. Oh Janica! I can't even imagine the road you have been on. Until your mom emailed this last week the last I heard was he was doing better after being released in January. I'm sorry Colton and your family are still going through so much. Life never sends us what we expect. I know Heavenly Father loves you all and will truly bless and support you through this. Isn't it amazing how our children can be the strong ones?!? We are supporting you and sending you love and prayers! Love ya!

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  3. I cannot even imagine how hard this must be for him and for the whole family. I am so glad that you have found a way to keep us all updated so that we can all send good thoughts, prayers and energy your way. Love, Sara

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