This Week's Unfortunate Adventure....

Last Friday night, Ava began behaving differently.  She was irritable and didn't want to be held or touched. By Saturday night her fever had spiked to 102.6, and she was beginning to have an increase in seziure activity. Sunday morning she woke up to another splitting back.

It had been 6 days since her last dose of an antibiotic, and during that time the strain of staph she'd left the hospital with grew again, this time even faster.  Two hours later, we made it to the ER in Jackson.  Her back was bubbled and swollen, and the skin (although dark red in this picture) was transparent enough to tell that underneath the fluid pocket was an exposed rod...again.

The surgeon decided almost right away that the rod had been compromised with infection and needed to be removed. This made for her fifth emergency this year.  Of course, it was upsetting for us to hear this news because 1) she absolutely needs those rods for support (read previous posts to know exactly why) and 2) we were told that with one rod out, the other would possibly need to be removed, because if it wasn't, there was a chance that there would eventually be too much pressure on the remaining rod, and that could cause the ribs to which its attached to break. With the removal of the 2nd and possibly 3rd rod we could have another problem.  The removal of another rod would obviously require making a fresh cut, and that could cause the infection to spread to even more areas on her back.  Any rod removed now could not be replaced again for at least another 6 months, so the decision would be semi-permanent.  All we could do is pray that the doctor would make the best choice for her during surgery.

After the surgery, he let us know that he only removed one rod, and he felt optimistic that there was enough slack in the remaining rods to keep them from breaking her ribs as she grew.  Two more incisions were made to get the rod out. There was so much dead tissue that needed to be removed, along with the fact she had still not had time to heal from her previous surgeries, that the hole left in her back was very large and very deep.  This is what the hole looked like two days after the surgery.  By this point it had already shruken by about an inch...which is amazing!

Because of the size of the hole and the staph that is still in her, a wound vac is being used to drain as much of the "gunk" out as possible. This picture shows a wound vac only over the hole, but by the time she left the hospital, one was needed over the bottom inscision as well.  She's back to sitting in her wheelchair most of the day, and gravity pulls the infection/drainage from the upper incision and hole down to the bottom and causes it to seep out from there as well, so covering that wound with a wound vac made the most sense. We are praying that within a month or a little longer, the wound will be closed enough that a skin graph won't be neccesary to finish closing the hole. Pray with us!

Ava received a very special visitor during her hospital stay....another Aicardi angel, Hope Martin. I should mention that this is a BIG DEAL because there are so few girls in the world with Aicardi Syndrome, and Hope is the only other angel she has ever met! I just know Hope will be an amazing big sister/mentor for Ava...they even have matching friendship bracelets now to seal the deal!

Here is Ava on discharge day!! She is fortunate enough to be able to come home with a month's worth of antibiotics, a portable wound vac, and a home health nurse. So far, the missing rod has not seemed to have adversely affected her health...hallelujah!

  Ava is home now and back to her old silly self!  She's keeping busy Skyping her Popi and telling him all about her week since he is away again with the Guard. Such a sweet little girl!

Thank you all for the prayers and good thoughts. You are all such a blessing to our family!