Frustrated and a Little Disheartened

[Guest guest]

Hayden was not able to get his casts replaced this week past because

Dr. Pirani was in Uganda and Milt was sick. Thankfully my husband had

driven me out to the hospital and I had not schlepped all the way

there on transit because I would have been a little more ticked. Also

thankfully, I had not removed Hayden's casts, so was instructed to

leave them on until next Tuesday when Dr. Pirani will see Hayden

again. I left with a slightly cautious feeling because as you know,

Hayden's skin has been an issue for us.

It was going along fine until yesterday when I started getting whiffs

of " the smell " again. I had been consistently checking the tops of

his casts which is where I had smelled it before when his skin was

bad, but this time I smelled around his toes and Oh! Pee-yew! Left

foot very " tinky " ! I talked to my husband and we hemmed and hawed

about what to do. Hubby was disinclined to remove the cast because it

was still technically four days until the appointment and he did not

want to lose ground. I reasoned that we had most likely already lost

ground because the casts were not done this week. We decided that the

smell was coming from his big toe and that we should try to just cut

the cast around that area to free the toe a little. He has deep

creases around his big toes and they don't get a lot of air. Of

course, this is easier said than done and as we got closer to his toe,

Hayden got more irritated and upset because obviously it was hurting.

We fiddled with it a few times before I just finally said " we have to

take it off " and hubby agreed.

Good thing we did - the cast was quite tight around his big toe and

what had happened was his toenail has pressed right into the pad of

skin above it and left a half moon shaped cut that was weeping and

stinking pretty badly. I imagine as we were taking the pressure off

of it, it was hurting quite a lot, so I was glad we just made the

decision. I applied some nystatin and we aired it out quite a bit and

Hayden is happy as a clam kicking his now free leg. By my estimation

it is at around a 50 degree outward rotation and so I am going to try

and gently stretch it as often as I can so we don't lose any major ground.

I can't helping feeling like we keep taking two steps forward and one

step back with this. I am getting so tired of this part of it and

wish we could just be in the boots and bar already, especially knowing

that if Hayden had gotten proper treatment in the first place, we'd be

so much further ahead of the game at this point. I am feeling so

frustrated and a little disheartened (hence the subject title) and

just so anxious to get to the next stage because we still have such a

long row to hoe in front of us.

I took some pictures of what it looks like and will upload them, or

send them to the CFPICS site. It looks much better today, by the way.

Amazing how kids can heal!