Ashley's Story

She will leave fingerprints all over your heart



Its taken a few days to process the information from Ashley's ENT appointment last Friday.  In a nut shell...she still has a severe infection behind the mastoid bone...and although it isn't better... she is feeling better.

Our ENT basically told us the next step to rid her of this infection is a very invasive surgery.  Its called a canal wall down mastoidectomy.  It involves the removal of a lot more bone than the original surgery that was done two years ago.  It will also involve finding a new surgeon willing to perform it on her.  Her current surgeon has never done the procedure on a child and the risks of the surgery itself are very, very high (loss of hearing, cranial/facial nerve damage,post surgical infection are just a few of them).  He is making a few referrals for us and wants to be able to consult with their opinions.

The bones behind Ash's ear are very swollen and there is a very large knot of infection that has formed.  Some of the redness has disappeared and so we are encouraged that the antibiotics are at least keeping it a bay for now.  Originally the ear was swollen and very, very red but there was no knot.  Now the redness is almost gone and the bottom half behind the ear has no redness at all anymore.  She isn't crying much anymore, but does push on the ear.  You can see in this picture how far out the ear is swollen from her head and you can  also see the knot.  The infection is in the actual bone and not the ear itself.  Its kind of hard to explain, but the infection settled into the mastoid bone which is full of thousands of little air pockets.  It resembles a sponge with lots and lots of areas for infection to settle into.

If you look closely you can see part of the incision from her first surgery.  Its the pink line going down toward the ear lobe.  This is photo gives a great perspective how very swollen the bones of the ear are.  On a normal day her ear lays flat against her head and you can't even see the incision.  The ear is protruding a couple of inches off the back of her skull.

We have not determined if this operation is what needs to be done.  Its just what this particular doctor felt he would do next.  When comparing the CT scans from this past week and the ones with the last infection we do not believe the infection is close to entering the brain cavity.  I think this gives us some time.

Putting Ashley Kate through such a huge procedure is dangerous.  In a situation like hers it becomes life threatening.  The risks are very high and it is not something to go into lightly.  We are basically having to decide which risks we are willing to take.  The risk of not proceeding and continuing to try and treat the infection versus the risk of what the surgery entails.   Its an impossible place to be in.

Ash is not a normal child.  She is not a healthy child with an ear infection behind the bone in her ear.  She is a medically complex, severely immuno compromised,TPN dependent, on her last CVC site, transplant patient with an incredibly rare infection.  An infection of this magnitude is not often seen.  It doesn't happen to most children... but we chose transplant for her all those years ago and along with that transplant came a whole magnitude of things.  Severe infections are one of those things.

Currently Ash is on some very strong antibiotics.  Her very sick liver is struggling as it tries to process the medications.  She is very, very swollen.  Mainly in her neck, face, and above and below her eyes.  She's a little scary looking most days.  She got out with us one day last week but that was all.  She's tired of being confined to the house and so we are trying to take her on as many rides in the car as we can.

At this time we are waiting on the referrals, then we will be waiting for the appointments, and in the meantime we are hoping her infection does not progress.

Its a very busy, very stressful week at our house with lots and lots of things going on in addition to Ash's infection.  I'm ready for it to be behind us.


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