i got evan to the hospital at 8. his procedure was at 11, but he needed to be there early for an infusion. they also wanted to take his factor level an hour after the infusion, but before the surgery itself, so that they knew he was alright. that's a great idea in theory, but evan has got some of the hardest veins to find. so we ended up with two pokes by the nurses, then called in the iv team (i live mani...she's awesome). but even she had trouble with him and had to poke him twice. we finally got him infused, at 10:15. so it didn't quite leave an hour before the procedure (and lab time) to get the factor level back. it was decided we would go ahead and take a level after 15 minutes.
well, in an effort not to blow e's iv that had been put in his hand, they needed to find another vein to get the blood from. this time, it was the foot. this poor kid. mani got a little cathedar in him and was planning to milk him like a cow to get the blood to come out into the tube. but (in a strange irony) his blood clotted right away and we couldn't get the blood. the hemotologist tok that as a good sign and gave the ok for him to go ahead with the procedure.
***side note for other hemo parents, e's usual dose is 500 IU, but for this we had to go with 750.
the actual procedure itself took just about an hour. it was weird not being able to be with him. even though he was asleep and wouldn't have known if i were there or not. dr. coughlin (the surgeon) came in to tell michael and i that he did great and that we could go back to see him soon. when we got back there he was waking up from anesthesia and was crabby. but he drank juice right away and ate some graham crackers. he was connected to a bag of saline, as he would need fluids for the next 24 hours just to make sure he has enough in his body.
about thirty minutes or so after we went back to see him, we were moved to our room in the children's hospital. we stayed there for two nights, and were able to go home at 8pm on friday night. it was really nice to be home.
now we're on to the next part of this port...which is actually using it. e will start his prophy treatment around 02.18 or so. a nurse from hemophlia of the sunshine state has already come to the house to show michael and i how to use the port on a mannequin. we'll start the prophy treatment with a home nurse, and then transition to me doing them. i never in a million years thought i would be sticking my own child with a needle.
and here are a few pictures from our stay at st. joe's. i feel funny making posts without pictures. so here they are.
Posts
10 comments:
I'm so happy he's doing so well. He is just a doll too! Keep up the good work Mommy!
I am so happy everything went well. HE is so cute god bless him
Thank goodness he's doing well. Only E can look ADORABLE in the hospital.
That's great news. Welcome to the world of prophylaxis, and the ability to sleep a little easier knowing that your son will have more normal factor levels in his blood 24/7.
It was about 2 weeks before my wife was doing the infusions, I started a couple of months after that. The nurse kept coming for a while to help my wife in the mornings b/c although my wife could access the port quite easily, the nurse would make sure my son wasn't reaching for the huber needle and jeapordizing the sterility of the procedure.
Congratulations on getting the port. My grandson has had his for 6 years and it changed our lives drastically. Now you can start living a more "normal" life. You won't have to go to the ER everytime something happens. Thank God "little e" is doing well.
Awww E looks like this doesnt even bother him.
All the credit goes to his FABULOUS mommy!
I'm so glad to hear you went ahead with the port and all is well. You're gunna feel like a super hero once you get the hang of infusing. It's such an empowering feeling. Evan is very lucky to have a mom like you!
I'm so glad everything went well, I knew it would. E is so adorable. Little guy has been through a lot. The port will make infusions so much easier. Don't be nervous, you'll be able to access him in no time. If I could do it, you can do it. I never thought I'd be able to stick my son either, but it's amazing what you're capable of when it comes to your kids. Wishing all of you the best!
Love the post....
It reminds me of what we had to go through when our son had his port placed when he was a little over a year old. It was sureal(sp?) to think I was going to be poking our son with a needle but now 8 years later I wouldn't have it any other way.
Good luck on the journey and jsut remember there are parents out there for support.
Post a Comment