Hospital Adventures 09/2011


Friday it happened. Something so small, so common, he bit his lip. I can’t even begin to count how many times I’ve bit my lip or tongue. No big deal right? One would think. We are standing in the kitchen and all the sudden Anthony starts crying. He’s 2. Generally it can be assumed that there isn’t anything really wrong with him and since I had just looked at him 5 seconds before and saw that he was absolutely fine I wasn’t worried. Then the blood starts.

OH MY GOD, WHAT DID YOU DO!”

Every bleed sort of has a chain of events after its noticed.

  1. Get him to stop crying.
  2. Ask and ask and ask what happened until he is able to explain.
  3. Locate the affected area.
  4. Ice and pressure. (Mouth bleeds usually require come sort of yummy icee treat)
  5. Decide if it is hospital worthy.
  6. If not hospital worthy measure it and watch to see if it becomes hospital worthy.
  7. If it is hospital worthy check into the ER and jump through their hoops (have bag ready, you never know when it is going to turn into an overnighter)
  8. Leave ER and locate an ice cream shop, fro yo bar, or gillati place.

Seriously, this is how I operate every single time. So the bleed starts Friday morning around 9 am and it’s on his upper lip so maybe it will stop on it’s own, but it’s kind of inside his lip so probably not. Adult meeting! Does he need to go? When do we take him? Is it an Orlando visit or can we swing the local ER? (I have been denied service at an ER before and sent to Orlando because of the hemophilia. No I’m not kidding.) So we decide to wait. It really wasn’t horrible looking. Thats the thing about hemophilia, wounds don’t bleed like crazy they just bleed for a long time. You’ve got to catch them before they A) Swallow too much blood or B) Lose too much blood. Well it was kind of an off and on bleed so I was able to make it through the day without worrying about his mouth too much. Saturday morning however, he came into my room with blood all gobbed up around his mouth. Starting to get used to waking up this way. Off we go to the hospital, factor in tow. This should be a quick trip. Nice and simple, his mouth is bleeding and it has been off and on for about 24 hours, nothing else is wrong and we won’t have to wait for the hospital’s pharmacy to bring us factor (that is known to take 4+ hours). Our doctor was young and nice and Anthony clearly liked her, all in all she was  a good children’s hospital doctor, except for the fact that she didn’t know much about hemophilia. Now I love it when a doctor asks me how I do things rather than just deciding for us what will work best for our son. But it always bothers me a little bit when I have to explain hemophilia to a trained medical professional, one that works in a hospital with an entire Hematology floor no less. That’s cool though she’s willing to take direction from us and I’m always more than happy to educate, as much as I can, about hemophilia. Doc checked with her boss and took our factor, called our hematologist and sent the nurses in to get Anthony all prepped for his medicine. They had to stick him 3 times before they were able to get the needle in right. Apparently our hospital of choice now stocks a butterfly that retracts it’s needle whenever too much pressure is put on it. I’m not squeemish anymore when I see blood but looking down and seeing it pour out of the IV makes me run through just about every extreme emotion I have in about 2.5 seconds. Luckily they got it in the end without me suffering a complete verbal meltdown in the general direction of the very nice nurse lady. Then the doctor messed up and mixed the wrong amount of factor.

“OMG SINCE WHEN IS THIS SO DIFFICULT?!?”

Just kidding, I smiled and asked her if we had enough that wasn’t mixed wrong to give him or if we were going to have to wait for the pharmacy. We had enough, he got the IV and all that was left was to get our discharge papers and find an icecream shop.

It was 9 am when we set our for the ER and around 3 pm when we finally got to leave.

An entire day at the hospital because he bit his lip.

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2 thoughts on “Hospital Adventures 09/2011

  1. What a trooper Anthony is. Sarah, you are “blazing trails” even though many have gone before. What a help to have a page where you and other parents can communicate!!

    • Things are always changing! Even though hemophilia has come a long way treatment wise we still have a lot longer to go before our boys are cured. I wish he didn’t have anything wrong with him and at the same time I feel blessed that I get to be apart of a community that is still finding it’s voice.

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