Between a Rock and a Hard Place

We had originally planned a Care Conference to discuss our discharge plan. This obviously changed, and the conference became, once again, about the fact that we can't get out of the hospital!!

First off, I absolutely love M's team including her Primary Ped, Dr. Keefer, Ped Attending, Dr. Leggat (who constantly reminds me of Dr. Roth!), and the brilliant, brilliant Immunologist, Dr Church (did I mention that this man is brilliant??)

I'm too tired to go into everything that we talked about, but we discussed Moriah's acute situation which consists of her having more fevers *they started again two nights ago =( * and is possibly "brewing" another something. We are all just keeping a very close eye on it, hesitant to add on anymore antibiotics because she is already on Zosyn.

The team is extremely concerned about Moriah constantly being on antibiotics, and she is now developing resistance to several BIG-GUN antibiotics - meaning these are saved for last resort and then there is nothing left to treat her after these.

We agreed.

Justin and I also shared our concerns about also making sure she does get proper coverage when needed. The reason she went into septic shock or even the first stages of septic shock was because she didn't get the coverage she needed - which was very difficult to determine because they didn't know WHAT to treat since all her cultures were negative.
Nevertheless, we don't want to let her go over the edge - OBVIOUSLY - the hard thing is knowing WHEN to treat her (most times, the only way to tell if she is infected is just based on how she looks - her white count and crp can be completely normal and nothing will grow out of her cultures - which are MAJOR markers of infection!!). So, this can be a very difficult, scary balance to find. I have been told that we are between a rock and a hard place many times over the last several weeks.

We are still waiting another 3 weeks or so to re-test M's blood, and see if she does in fact need IVIG shots. Dr. Church, M's immunologist is also looking into some metabolic disorders - mitochondrial something or other...

I brought up the fact that we NEVER dealt with infection until after her heart surgery at ten months old, and wondered if there was anything anatomically different from her heart surgery that would cause this...and Dr. Church said that in some cases, surgeons might remove the thymus, which might explain things... so he is going to look into this.

I don't know. Still so many unknowns. We want to go home so badly, but we also want Moriah to be better, and to get to a point where we can go home safely.

Justin is slowly getting better as well. M has just been really lethargic and is sleeping a lot - which is nice for me because it allows me to rest. However, it still shows me she is not up to par.

Will post more in a day or two.

Love
Victoria

*This morning, our sweet social worker, Natasha, gave us a card. When I opened it, the sun and the shadow of the blinds highlighted this phrase. It was such an encouragement to me, as I recognized where this Hope comes from.


Thank you ALL for your love and support.

We continue to hold on...