To Treat or Not To Treat

That is the question we must ask whenever The Kid gets a bruise. The learning curve is great but we are getting good at determining the answer in just the few months we've been dealing with his hemophilia. I will get to the head bonk shortly but let me first give a quick summary. In May we learned the Kid had severe hemophilia A. This affects his blood clotting levels of factor viii of which he has -1%. He does not bleed any more or any faster than the rest of us, he just bleeds longer. This is due to not having the factor that clots his blood. Ther are different types of hemophilia that is affected by different factors. You can go to the National Foundaton for Hemophilia to find out more or check out the Bleeding Disorder Foundation of WA as well. Anyway, last night during "the insanity hour" ie dad's home, dinner's on,and bed time is coming hour, The Kid was happily playing at his activity table when he leaned out to see a puzzle. And boom! Baby fell down right smack on a puzzle piece knob. Of course he used the middle of his forehead as well to catch his fall. He has not yet mastered the part where you put your arms down first. So right away a bruise formed. We iced it with our nifty little Nemo ice pack and sent him off to bed. Any other kid would have had a welt and all would have been well. The Kid on the other hand is a bleeder, so when he woke up around 9:30pm and we saw a lovely hematoma had formed, we knew it was time to call the nurse. I'm starting to get good at determining a good bonk from a bad bonk. My first question is "would I give him factor if I had it at home?" The answer in this case was "yes." So after speaking with superstar hemo nurse Renee, I packed up the little monkey and set off in the rainy darkness to Childrens Hospital. Some may ask why we don't go to our nearby hospital if we have our meds with us. The reason, the local hospital, as wonderful as they are, aren't set up to A.) treat hemophiliacs and B.) expertly find a vein on a chunky monkey baby. We want the fewest pokes and the least trama as possible so we stick to the best in kiddie care. The other great thing about our hemo team is that they call ahead to the ER and tell them we are coming. I must say I feel for the other families there (especially when there was a full house like last night) who have to wait for such a long time. For us we usually don't even have to wait. The first nurse was nice but couldn't get a vein after the first try and although I asked about the head vein, people were still freaking out that I even suggested it. She must have realized I wasn't messing around because after that first unsuccessful try, she called for the i.v. team. This nurse was older and wiser and although the head vein was discussed we opted for a fat little vein in his arm and after some prodding it was successful. Now here comes the learning curve. I hope others with little ones with or without hemophilia will feel this blog entry is helpful for any (God forbid) future trips to the E.R. Please ask questions! Don't feel rushed and try not to panic when presented with suggested options. At this point in our trip we were ready for our factor treatment. Then a nurse comes in and says we are going to get a CT. Um excuse me? First no one talked to me about this and second, why would they feel this is necessary. The nurse and the ct tech are not in charge so back to the room we went so I could speak to a doctor. My questions? Is this 100% necessary and why. If he is being given factor and he shows no signs of concussion or any other abnormal behavior, is the radiation risk and cost involved really necessary. Hemophilia treatment is extremely expensive. One of the most in the world. Cost does not outweigh the care for my child, but I want to be certain that we minimize any tests or other treatments that are not absolutely necessary. Honestly, I think the doctors last night did not even consider NOT doing it. For them, this was protocol. They were on auto pilot. I called Dada and he called Renee and we were on the side of thinking it was PROBABLY not necessary. However, since we'd be going home and putting the Kid to bed for another 8 hours and we couldn't be 100% sure about bleeding to his brain, I decided to go ahead with it. This is where I am gathering knowledge for another time. If it had been the middle of the day and we were going home to play, I would have opted against it. But better safe than sorry and now I have an experience to judge others with. In the end, I was right and the doctors told me so. We ended up being in and out a little over 2 hours. We were home about 1:30 in the am and when I opened the car door to get that baby out, his little peepers were wide open and he was laughing! Needless to say he went right to bed! And slept until 9am. So another hemo notch into our belts and to all the bleeder parents and non bleeder parents, please advocate! When in the ER especially, ask what is being done and why and what makes it necessary. I would not have changed my decision, but I certainly felt empowered by being able to have the choice. Oh and the Capt saw the bruise on the Kid's head this morning and concluded that red and blue make purple and he likes that color.