the calm before the storm?

i realise this is pre-emptive worry, but i wouldn't really be me if i weren't worrying for nothing about something. so, cold and flu season is almost here. it's a real bitch by itself, but throw in a kid with a port and it becomes a raging one. so i find myself trying to enjoy the days of playing outside and sending him to the gym daycare with the other children before i find myself wrapping us all up into a plastic bubble so that we aren't living out of st. joe's this winter with small fevers that hopefully haven't turned in to port infections.

i have decided that i am going to be a bit more commanding about this, though. i spoke with kathy (a nurse from hoss) about the possibility of doing the first 48 hours of antibiotics at home while we waited for cultures to come back. for non-hemo parents, this would be the first 48 hours you are mandated to stay in the hospital at the first sign of a fever (which, i should tell you is only allowed to get to 100.5...oh yeah, and you can't leave until you are fever free for 24 hours). she said that, while it is up to the doctors in your practice, it is not unheard of to allow parents to administer these antibiotics at home while you wait for the cultures to come back. so i am going to try and strong arm the doctors to follow this plan with me. but i am going to go in ahead of time and try to sweet talk them first (are you reading this, sara!?!). i figure, if i am capable enough to stick a needle into my son's chest every other day then i am more than capable of keeping it in there (with the biopatch on) and hooking up some antibiotics every 8 hours. i would even push it slowly over 30 minutes if they were unable to lend me a machine. i would also promise not to bathe him or allow him to run around like a wild beast with a needle sticking out of his chest.

you see, it's not that i don't appreciate the doctor's perspective. i do. truly. however, something i learned last year when we were in and out of the hospital three times over two months, i realised that noah gets pushed to the side. and while he would never begrudge his brother the attention, devotion and care he needs from his parents, it definitely wears on him. he worries for his brother. he misses his mom and dad. he misses being home. and being without him for so long...not being able to show him attention and affection daily like i would if i were home is really trying. and one thing i am trying so hard to do with this disease is to keep things as normal as possible. for everyone...evan, noah, michael, and myself.

who knows, though...maybe i need to redefine normal.

I did it!

well, i did it. i accessed e's port today. the nurse was here and asked if i still wanted to do it...i sort of hesitated and she said "yep, you can do it." so i got everything ready, and i didn't even screw up putting on my sterile gloves and keeping them sterile. and then i accessed him. it was such an amazing thing. i was scared and nervous that i was going to mess up something, or hurt him...but it went so well! he laid there and we sang songs as i infused him...and he didn't make a peep when he saw me with the needle. this is such a huge deal for us...it means that we can travel without worry now. it means that if something bad happens and he needs to be infused right away, i can do it myself. and, of course, it is just another step on this crazy hemophilia journey that i seem to have conquered.

when e was first diagnosed, i was so scared...and so, so sad. i honestly mourned my idealistic views of his life for a long time. hell, i still mourn from time to time. but its hurdles like this that make me realise we are creating a life for him that is full of capability and hope and independence. as a mom, i work so hard to acchieve that last one...independence. and i have done a hell of a job with noah, and have been scared that i would coddle evan too much to allow him to be like his big brother. but after i find that i can handle the tough parts of this disease, i realise that i can teach him to handle them too.

and, for your viewing pleasure, here are some more recent photos of him. he's growing too fast =(

giving daddy "mwah's"


lounging with daddy on the couch


snuggling with "wowah" and "so cozy" (his blanket)


acting silly wearing noah's army dress up goggles

entry has been made.

well, e got his first infusion yesterday. i have got to say that emla cream is nothing short of amazing. we have had some toruble with the nurse that was supposed to come out here, so i took him to st. joe's until we can find someone that is on board with the way we choose to access his port. when it was time to lay him on the table he got really nervous...he knows that usually means a lot of poking to get an iv in. plus, there was a nurse (that he has never met before) holding him down with her "hug" and she was wearing a mask. we were soon able to distract his apprehension and anxiety by singing "head, shoulder, knees and toes" and he didn't even notice when sara accessed his port with the needle. in fact, he didn't notice she was doing anything at all. it was great.

now i just need to get comfortable with all of this so that i can go ahead and start giving him the infusions.

port surgery went really well!

i was pretty nervous before e's surgery. i think it was the thought of my child having to be put out. and the fact that he was being cut open. and he just happens to have this disorder that keeps him from clotting well. so, yeah...cutting him open was frightening. however small the cut was, it was still cutting him open to me and that was unsettling, to say the least.

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.