is our date for Kyler's surgery. He's going to get a Port-a-cath or Port. The port is going to be amazing. Of course it's a surgery and that part stinks, but the end result is definitely worth it. Kyler will have a small metal disk beneath the skin on his chest. The surface on his chest will be a little smaller then a dime with a line running to a vein. We will be able to insert a needle directly into the port and infuse his Advate/Factor at home.
He will be on weekly Prophylaxis, meaning, we will treat him every week at home once a week. No hospitals, no nurses missing veins, no blown veins. If once a week treatment isn't enough - let's say he has 3 joint bleeds in 3 months, we'll go to twice a week at home treatments. If he develops a problem joint where he has multiple bleeds in one joint, we will go to multiple times a week sooner then waiting for 3 bleeds in 3 months. He will be closely monitored and we'll have to write down everything and report everything to our Hematology team at Children's.
Soft tissue bleeds, which are most of the bleeds Kyler has had, aren't as big of a deal. We'll just treat them as needed at home. It's the joint ones we worry about b/c they can cause damage.
We are anxious to get this over with. I don't like the idea of a surgery for our baby, but it is the best thing for him. I also don't like waiting. We need to for referrals and the surgeon's vacation, but I'm so afraid he's going to have another bleed between now and then. Please say a prayer that he doesn't have any bleeds before August 17th!!!
Kyler is talking up a storm!! He repeats everything we say. It's so cute. We say "love you" to him and give him a kiss, and now he says "yuv you". It's so adorable and it makes my heart melt. He seriously says more then 45 words. We've lost count. We are definitely very proud parents.
Hope you're all doing well. Take care!
No comments:
Post a Comment