I feel like I say that all too often. We had a good couple of months though, this was only our second time back to the hospital this year. Last week had to be the most horrifying week for me. It all started when I took Luis in for a check up after noticing some tissue had come out where his broviac line was. The surgeon shocked me when he said that Luis needed a new line. As some of you may know, we've been doing so good. We had so many problems last year due to an inhibitor, but just 2 months ago his inhibitor was no longer detected. We started prophy and everything was great. When they told me he needed a new line I was obviously upset because I didn't like the idea of yet another surgery. All I could think was " my god, this will be his 4th surgery and he's not even 2 years old" After thinking it through, I told the doctor that I would rather him have a port put back in instead of a broviac. I thought it would be better because he no longer needed so many infusions now that we were on a prophy schedule. And of course, I feel that it's tough enough to be a little boy and have this bleeding disorder. I want him to be able to take baths and go swimming with his sister this summer. He couldn't do that with a broviac.He was scheduled for the O.R. last week. I felt horrible, but almost like it was routine. I knew exactly what I had to do. Before surgery, they gave him a dose of factor 8. I put my scrubs and mask on and walked alongside the stretcher to the operating room and once again I had to hold back my tears as I watched my son's body go limp in seconds as they pushed through the anestesia. That has to be the worst feeling in the world. We waited for about 3 hours until they called us in. He looked so good. They were able to get a port in and I was so relieved. When we took him to the room, something just felt wrong. Was he supposed to be in this much pain? This wasn't like the last couple of surgeries. Tylenol did absolutely nothing for him. They had to give him morphine every hour just to keep him comfrtable. He finally fell asleep and we all went to bed. It was 3 o'clock in the morning when I woke up to his cry. I turned on the light to find that my baby was swollen from his chest, up his neck and into the side of his face. He couldn't move and cried in pain. He was bleeding, I knew it immediately. Everyone was called in and they had me sign papers for an emergency surgery. His hematologists came in and told the surgeons to hold off on surgery. They gave him a large dose of novo7 assuming that the factor 8 wasn't working. They continued that every 4 hours until they noticed the swelling going down. He had x-rays everday to make sure the port was ok. All his infusions were through an IV in his foot. The port couldn't be used due to the large hematoma over it. In the next couple of days the blood results came back and confirmed what had happened. His inhibitor was back and stronger than ever. He basically went into surgery with no clotting factor, so when they closed him up he continued to bleed slowly. The blood had nowhere to go but to follow the tunnel that the port was placed through. So now, there we were in the hospital back on novo7. They changed his dose to every 8 hours last week in hope to get us home, but with my son, nothing is easy. During a dressing change his incision site slightly opened and began to bleed. We went back to every 4 hours immediatey. His doctors tell me that we'll attempt to overpower his antibodies as a soon as possible because he isn't responding as well as he should to the novo7.
I've never felt so helpless as I did last week and continue to feel that way now. I'm just glad to have him home. No matter how much I stress or how much I've cried, you would never be able to tell that he's been through all of this. He is just the happiest little boy. He laughs and plays like he has not a care in the world. I pray that this will get easier. Not only for my son, but for everyone affected by this bleeding disorder.
