For those of you who don’t know; Bruce has a blood disease called hemolytic spherocytosis. Follow this link to see more information: https://ghr.nlm.nih.gov/condition/hereditary-spherocytosis. In layman terms the red blood cells are shaped like basketballs instead of platelets.
His condition is severe enough that he needs to have his spleen removed; we can opt to simply watch him and be ready to do transfusions… but honestly his jaundice is scary to me.
He does not have the energy that little ones his age should. He spends a lot of his play time at daycare laying on the ground playing. His red blood count on a good day is 8, (the normal range should be between 11.5 through 14).
His body is currently fighting against itself as his spleen tries to clean the blood cells that are the wrong shape. They are very fragile and get destroyed as they go through the spleen, in turn the spleen works harder and it grows to process the all the red blood that are the wrong shape. Therefore his spleen enlarged. The average full-grown male spleen is 9 cm, Bruce’s is currently 12-14 cm.
Delaying the surgery longer puts him at higher risk for rupturing his spleen during normal play, physical developmental delays, and the inability to stay healthy because his body is working so hard to maintain his red blood count. It also puts him at risk for gallstones from the jaundice that happens because of the volume of blood being broken down.
Weighing the risk of the surgery versus the risk of starting preschool as is- is hard on my heart. But for Bruce it is the right thing and the right time. We covet your prayers and thoughts as we step into this new stage in life.
We will be at the hospital on June 22nd for the surgery and he will be admitted to the pediatric unit for recovery till Friday or Saturday, he does have to stay out of daycare for at least one to two weeks.
Without a spleen he will be more susceptible to germs and will be on a daily dose of antibiotics to help his body fight off normal germs that your spleen cleans out of your body. It will be even more important for him to not drink or eat after other people; this as a kid will be a learning curve that will be tough.
Thanks for all the help- I will keep everyone posted, and I appreciate the prayers, thoughts and care from all our friends and family.
