H is for Hemophilia

Today Elias' hemophilia diagnosis became very real for all of us in the barrel. We have had the good fortune in the last 11 months to not have any major bleeding episodes--made it through every vaccination with no problems, and only daily big, purple bruises and two mouth cuts that gave any indication to others that Elias has hemophilia. Elias is days away from walking independently (he has taken one or two steps alone but finds that pushing his toy or crawling are much more efficient modes of transportation), so we have made the decision to be aggressive with his hemophilia and protect his joint health by doing prophylaxis treatment via a port-a-cath for venous access (in lieu of Mama and Daddy trying to give factor through a vein in his arm). This will give Mama and Daddy the ability to do infusions of his hemophilia factor 2-3 times per week at home instead of a hospital and Elias' the opportunity to really keep up with his peers. So today Elias was scheduled to have surgery to have the port placed under his skin on his chest. Eventually when Elias has a little less baby chub on his arms, we will not need to use the port and it can come out. Also on the books, Elias was due for some ear tubes to help with his constant ear infections. So it was a big day with two surgeries lined up.

Elias got his first dose of factor today. He did really well with the infusion. Thanks to nurse Lisa for getting good stick right away! Of course Elias had to be strapped into the papoose and held down by all (much too mobile and strong these days) and he cried and cried, but that only lasted for the infusion itself and he was back to crawling around in the treatment room pushing his toys around.

Then off to the hospital for surgery. He got to wear baby-sized scrubs and play with a great gumball machine.

After he went back, and Mama and Daddy went to lunch and got a call soon after. Dr. K (the port surgeon) told us that when Dr. H (ENT surgeon) went first to place the tubes that pus came out of both ears. It seems that last week's cold has resulted in another ear infection! The tubes went in, and the infection was cleaned out, however due to the higher risk of infection for the port, it was not placed. So Elias only had one procedure done today. We are very thankful and blessed that Dr. H went first to discover the double ear infection as it could have complicated the port with infection. Elias recovered well and was back to his old self by the evening. Let's hope that these tubes will help his sleeping at night. Many thanks to all of those praying for us today---your prayers were definitely heard with a fortunate find!