Hemophilia: Emily’s story

Emily: His nurse came in and noticed that his diaper was just full of blood, and she said ‘Can I take him and have a hospitalist look at him?’ and we said, ‘Okay sure,’ and didn’t really think anything of it. They took him, and he was gone for a really long time, and we were sort of packing up, and Jeff said, ‘I’m going to go find out what’s going on,’ so he wandered down the hall, Logan was strapped to the little circumcision board, and Dr. Melchert was trying to get it to stop, and they checked on him every hour and were changing him and trying to get it to stop it wasn’t bleeding profusely; it was just like a very slow ooze, so to speak. So they ran a bunch of tests, and I remember like 5 in the morning they came and took him and they were going to do a blood draw; that’s when lab came Wednesday morning. So they took him and I remember he came back and his whole arm was black and blue from like shoulder to wrist. It was probably around 10 or 11 that morning, the nurse came and got us and said that the doctor wanted to talk to us. So we went into like the nurse’s station, and the nurse put us on speaker phone, and the doctor – I don’t even know who it was, because it wasn’t a hematologist; I think it might have been the pediatrician who did rounds. She said, ‘You can’t have me on speaker phone. Do you have two phones close together?’ So then right there, I knew something was wrong, because it was like why is the doctor talking to us on the phone, and if it’s not a big deal, why does it matter if it’s on the speaker phone?

Logan was admitted to ICC, Infant Care Center. Dr. Heisel showed up in his room at the ICC, ‘He doesn’t appear to have a brain bleed. There doesn’t appear to be anything else wrong,’ but I had sort of a traumatic labor. He was sunny side up, and his chin wasn’t tucked, and it was a long, not progressing labor and everything like that, so she said, ‘I just want to do a CT scan just to be safe. So all I remember is they walked us to the NICU. Then later at like nine he had surgery and they put in a Rickham reservoir we actually had more problems with the incision of the Rickham reservoir; it was like leaking; things were coming out but none of the things could go in. So then there was a possibility that they were going to have to go back in and have more surgery, but he didn’t end up having to do that.

Jocelyn (pediatric nurse practitioner): So do you do the infusions, Emily, at home?

Emily: Yeah.

Jocelyn: How does that go? How is it?

Emily: Pretty good. So, Logan, he’s pretty much a trooper, so he gets to watch TV; he gets to watch his show. We were told early on from a Mom, ‘We tried the prize toy thing, and we ran out of options, and my child has three of the same Hot Wheels car, so don’t do that.’ With the Broviac we had to change the dressing, and it took four or five of us to hold him, because he was pretty strong, so one person would have a leg and arm, and one person had to stay sterile, and we had to physically hold more of him down. It took a while. I think the biggest challenges have problem [sic] been other people, just people who don’t know, like the comments people make and the questions that they ask. Sincere as they may be, you’re kind of like, ‘My kid can go to school,’ and things like that. A lot of people would make the assumption that he just automatically had HIV or AIDS. And then just that we parent differently than other parents parent, and it’s not like we go around broadcasting that he has hemophilia, so people are like, ‘Why don’t you just let your kid play?’ For one family, they were having a really hard time with their kid to infuse; he just would not sit still, and he was screaming and everything, and I said, ‘Do you want me to come over and have them infuse Logan in front of him and show him,’ so we did that.

I wouldn’t say in the beginning that my husband and I really leaned on each other, so I wouldn’t say that that was what it was. I think there may have been a lot of like personal strength, so it was kind of like there was no other option, I think was kind of that immediate response, like, ‘I guess we just have to do this.’ What could we have done? I think now, more or less, my husband and I lean on each other a little bit more than we did previously, which is nice, so we’ve had times where one of us is having a tough time or things are happening and it’s kind of like we balance each other out. I’m having a tough day, so I’m not really strong, so my husband is a little bit stronger, and then it will switch around. We very rarely tend to have moments where we’re both like, ‘I can’t do that!’ so we tend to have times where one of us is okay at the time, which is helpful and nice and is a good balance. It will be okay. It’s scary right now. It’s not a fun diagnosis, I can tell you that much. You never want to see your child suffer or in pain. You never want to stick them with needles, regardless, even if it’s helpful, you don’t want to do that. But in the end, he’ll be okay, and you never know what will happen research-wise and medical-wise in the future. So we’ve come a long way even in the last ten years, so let alone what’s on the horizon.