IOn October 28, 2014 my five year old son woke up with a bleed in his left knee. So painful , he could not walk. After X-rays his pediatrician sent us to Macon to see a pediatric orthopedic doctor . The doctor drained his knee to look for infection. He was without infection but it was full of blood. We were sent home for the weekend and told to come back for an evaluation that Monday morning. His knee begun to swell again. Once Monday arrived the Orthopedic insisted we see the hematology that day. We traveled to his office and he admitted Matthew immediately into the children's hospital there in Macon. After a long painful week in the hospital full of blood tests and questions, the hematologist discovered Matthew had a bleeding disorder causing a deficiency in his Factor 8. Factor 8 is a necessity for blood to clot appropriately. The doctor explain that Matthew has hemophilia and that he would need a very expensive infusion everyday until his knee was healed. Confused, because we don't have bleeding disorders in our family history, I questioned everything. The blood tests for more answers were going to take a while so after 15 inpatient infusions with little improvement on the knee we were sent home. We traveled to Macon everyday that next week to get his infusion. So much happening so fast and sudden poor Matthew just didn't understand why he had to get "poked with needles everyday" and dreaded our trips and hated what was happening to him he began to get angry and depressed. And myself, as a mother, never felt so helpless. So after that next week the hematologist wanted Matthew to be evaluated by a physical therapist. For three weeks he hadn't been able to walk without severe pain. And with little improvement on his knee I watched as he was evaluated, trying to be so strong although it was visible that he was not ready for physical therapy. His knee was still bleeding. The factor 8 wasn't helping, enough. After watching him suffer that day I knew in my heart something still wasn't right. I then took Matthew to one of the best hospitals in the country, Emory's Children's Hospital at Egleston in Atlanta. I knew he needed help immediately so the next morning we headed out. We went straight to the ER and with him previously being diagnosed with hemophilia they got us back to see the doctor quickly. At Emory, they have a whole floor dedicated to children cancer and blood disorders. Once I explained everything they admitted Matthew. The doctors ran test after test and discovered he also has a subtype of Von Williebrand disease. What type of hemophilia and Von Williebrand would not be known for sure until the genetic test come back next year. After two more infusion medications they finally found one that was improving his knee bleed. After a month of pain and muscle atrophy on his left side, he could bear weight on his leg without pain! He didn't have full range of motion but he felt a little of his independence coming back. We cried with happiness! We felt like help was here. We still don't have a definite diagnosis but the doctors know that this new medicine was healing his knee.they decided instead of keeping an IV in his hand that they would insert a PICC Line. They sent us home for thanksgiving with instructions and supplies so I could take care of his PICC line and infuse him daily and return for follow up dec 3rd. Over Thanksgiving I realize the mental impact was having on Matthew. Watching his older brother and his twin brother play and run and jump and him not understanding why he was not able to, broke my heart. It upset him that his brothers got to go to school and he was unable to and not learning what his brother Isaac was learning, he felt like he was getting behind.
On dec. 3rd he was cleared for physical therapy. He will start next week. They've changed his medicine once again, with the hope that it will keep his levels within his blood high enough until we get the genetic testing back. I administer his medicine every other day and flush his pick line every day between. The nurse comes to the house to change his dressing on his arm once a week. The paperwork for hospital homebound will go back to the school today.
In the past month and a half our life has been turned upside down. Having one or both of these blood disorders is rare. Therefore the tests and treatments are astronomical. I have been out of work since this began and we're starting to get the bills. Insurance doesn't pay everything and we needed my job and my husbands to make ends meet before all this. Between the medicines and the hospital stays, the supplies and equipment, procedures and doctor visits. Along with the nurse that comes to the house I don't know how we will make it work. We need help. Prayer works and thank you all !
NOV 9th : Looks like we get to go home tonight. We have to come back tomorrow morning at 8:30am so Matthew can get another treatment, and CJ and Isaac have to get labs done.
Matthew's last temperature check an hour ago showed a low grade fever....They think he may have caught a virus being here; another reason why they want us to discharge... He still can only hop on one leg and needs Loratab twice a day. He is terrified to even try to use his leg because the pain is so great, but Doc said we are making progress re-stretching the knee out straight and that's more important as it heals anyway. If Doc can get a nurse out to the house Tuesday then he can stay home to get his treatments. More updates to come. Thank you all for the love and prayers!!! Keep The boys In your prayers.
Rocking out to thrift shop macklemore, just got his PICC line. Was a champ! Thank God for medicine that calms him down. NOV 20th.
Please check back later today for updates!