Its been one week and we’re still here! So when your a parent that has a child with hemophilia, and you have a long stay here are some tips:
– Ask your doctors if you can leave the floor with your child, usually you can
– Read kid friendly books on bleeding disorders
– ask for a volunteer to play with your child… You need a break don’t feel bad about that
– meditate or pray
Now first and foremost I love my son, and I’ve accepted his illness. However, with that being said I still get frustrated with what comes along with this illness. Sometimes I get mad when people complain about having to take off work because their child is sick. I honestly want to tell them be grateful your child has a simple sickness. Be grateful you don’t have to spend weeks in the hospital. Be grateful you never have to feel bad about not being able to sit at the hospital all day with your child because work is a necessity.
Sometimes when I’m at the hospital I look at other parents who are there months at a time. They help me stay encouraged because I could only imagine what they go through. Now the issue with Walters hemophilia is his inhibitor and random infections. A child with hemophilia and an inhibitor is a whole different level of treatment.
Now I know that the more I’m educated with his illness the easier it will probably be. Eventually, I want to speak at events for hemophilia and be a hemophilia advocate.
I support bleeding disorders
Well we are stuck in the hospital on Thanksgiving day. Last year it was Christmas. Walter has been having temper tantrums, but who can blame him. We found out Walter has a bad blood infection. Its the type that loves to stick to plastic and blood clots. Did I mention he also has blood clots from his surgery.
Now a little advice for parents dealing with hemophilia for the first time. It sucks when you first find out. It was almost unbelievable to me. Men don’t carry the gene so Walter would have got it from me. Because I was adopted and I don’t know who my biological father is I will never know if this runs in my family. Sometimes I felt as though it was my fault, and I didn’t feel it was fair. I didn’t like for people to ask me questions about Walter because I didn’t feel it was their business. However, I’ve grown a lot since then and I’m not embarrassed by it, and I don’t want Walter to be.
Walter’s Hickman line got infected and that infected his blood. A blood infection could be deadly and I honestly told the doctor I don’t like the Hickman. Walter was around 6months at this time, and they said his hickman line could be replaced with a portacath. Now the portacath could be placed under his skin and the risk of infection is lower. However, with a portacath it has to accessed with a need and Owen and I would have to learn. Later on in my blogs I will have a video of me accessing Walters Port and giving him the factor VIII.
My first thought to finding out my child had hemophilia was, “How are we going to deal with this?” I was currently a second year student and all of this was happening around finals. I immediately thought the worst. I felt like he wouldn’t be able to have a normal childhood. I also felt as though his father and I wouldn’t be able to accomplish the goals we wanted to in life. I knew I needed to educate myself on this illness. The first step the doctors had to make was putting a hickman line in Walter’s chest, for him to get factor VIII. Walter had to get a hickman because he was a baby and that’s the smallest thing you can put in a baby. Factor VIII is a medicine that helps the blood clot. It is something a hemophiliac needs.
Taking care of a central line was much more harder than I thought. We weren’t told of how easy these lines can get infected; especially with a baby.