We had a lot of support. My friend, Tiffany watched the older 4 children when I had to take Silas in for pre-op meetings. My parents came down to watch the children at home while I was with Silas for surgery. Matt couldn't come right away (clinicals). So, my Dad stayed with us in the beginning. While we were in IN, our life long family friends, Tom and Virginia even came down to help.
The hospital was amazing. They took excellent care of Silas with so much love and compassion. They also took care of me as the mom. I was well informed during the whole process, and I could tell that they cared about all my concerns and desires as the mom.
Matt came to the hospital that evening. He brought Eli with him. Eli needed prophy while we were gone. So, it made sense to bring him and treat him there. It was a sweet time. Eli and Silas really bonded on a new level. Their hemophilia gives them a unique bond, and now they would both be on prophy. Eli has just blossomed since Silas got his port. He is thinking of Silas now, not just himself. So, he sticks his chest out more, and never whines or complains about the needle. Silas watches him. It is precious.
After a few days, we came home, and continued the post-op factor treatments. When we got home, we were blown away at the amount of work my parents and Tom and Virginia had done in the house: cleaning, repairs, new improvements. Words cannot express how thankful we are for the work they've done.
Silas's surgery was two weeks ago, now. We have had several perfect prophy treatments at home, until yesterday. He has developed a hematoma over his port. We're not sure why this has happened, but until it's cleared up, we are treating the bleed peripherally [via ER :( ], then he will undergo a dye study to check his port for leaks. If there is a leak, his brand new port will have to be replaced. This is such a heavy burden on all of our hearts right now.
Yesterday, soon after a sponge bath, Silas's steri-strips finally came off. So, now his scar is visible. It looks very healthy, but it is still a big ugly scar on my baby's little chest. Late last night, as I was nursing him in the recliner, that scar was staring me in the face. It (along with the newly developed hematoma) was making me sick to my stomach. Nobody wants to see their baby's perfect little chest with a big scar on it. It broke my heart, and I was tempted to mourn over this. I couldn't let myself.
I started to think about all that scar represents: All the hours of prayer and discussion over the decision to get a port, all the thought and love that motivated us to go ahead with the port, all the sweet nurses who tried (and often failed) to treat him peripherally for a bleed at the ER, the 3 1/2 years we've worked with Elijah's port, the intense training we received during Eli's post-op hospital stay those 3 1/2 years ago, the amazing support from all of Silas's brothers and sister, all the hard work that went into developing the technology of the port, all the years of study that Dr Kokoska (surgeon) and Dr Bush (anesthesiologist) spent in medical school, my parents and Tom and Virginia coming to help from Michigan, Bubble Wrapped Birth and all the love and support here, all the people around the globe praying for Silas, freedom to treat bleeds at home, and prevent bleeds with prophylaxis. . . The list is virtually unending.
So, I have a choice. It's all about perspective. I can choose to weep over my baby's now scarred chest, or I can choose to rejoice over that beautiful unending list of blessings when I look at Silas's scar. So much love and care is represented there. I just hope and pray that his port is o.k., and he doesn't need it to be replaced. One step at a time. God promises to take care of us, and we have to choose if we will trust Him or not. I have to trust Him. If I didn't, I couldn't get through this.