Jaryns Story: Jaryn was born on May 1, 2014 at 37 weeks gestation. After delivery Jaryn was thought to be a healthy baby boy. At about 36 hours old Jaryn received routine blood work to check his bilirubin levels, which cause jaundice (the yellowing of the skin). About an hour after the test were done the Pediatrician on-call came into my room and informed me that Jaryn’s bilirubin levels were abnormally high at 21.6 and that Jaryn’s blood work was showing some hemolysis (breaking down of the red blood cells) and that he would need to be transferred to Riley Hospital for Children by ambulance. Since Jaryn was in a rural hospital they did not have the necessary equipment needed to care for Jaryn. Jaryn arrived at Riley at about 2 am on May 3, 2014 with Rance and I following behind in the car. Upon arrival to Riley, Rance and I were informed that Jaryn would need to be put under 4 phototherapy lights and he would only be allowed to be removed from them during feedings and diaper changes. His blood issue was not a concern at this point. Jaryn received blood work every 12 hours for 5 days and once a day for the remaining 2 days. After 7 days in the NICU Rance and I were informed that Jaryn was well enough to go home and be monitored by his Pediatrician, but he would need to be referred to a Riley Hematologist for his blood issue. On May 13, 2014 Jaryn visited the Hematologist for the first time, they did more blood work and it was discovered that Jaryn still had some hemolysis going on, but his hemoglobin was not low enough to have to do a blood transfusion at 7.8. I was informed that if any testing were going to be done that it would have to wait until Jaryn was 3 months old, when all the maternal blood was out of his system. Jaryn was closely monitored with weekly trips to the hematologist and on June 10, 2014 he received his first blood transfusion, after discovering that his hemoglobin was a 6. After this transfusion Jaryn was monitored by the Hematologist with a trip every 2 weeks. On July 15, 2014 Jaryn received his second blood transfusion after his hemoglobin went back down to 6.3. Again, Jaryn was monitored by the Hematologist with a trip every 2 weeks, after this transfusion Jaryn’s hemoglobin went up to 9.1 and at one of the follow-up visits the nurses began doing extensive blood work to start testing Jaryn for certain blood disorders. On August 26, 2014 Jaryn had another appointment with the Hematologist and it was discovered that his Hemoglobin was down to 7.8. It was determined by the Hematologist and I to go ahead and give a third blood transfusion. At this visit I was informed that it was highly likely that Jaryn would need a blood transfusion from here on out about every 5-6 weeks until we can find a cause and alternative treatment. It is still undetermined as to a disorder/diagnosis that Jaryn is suffering from. Other than having issues with his blood, Jaryn is a healthy happy little boy! He loves watching his sister, Jaedyn, play and he smiles and laughs all the time and he is hitting all of his developmental milestones! Our family is so grateful for all of the support from our other family and friends! We love you all and appreciate and thoughts and prayers going towards Jaryn!!
Posted on: Thu, 11 Sep 2014 23:35:16 +0000
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