Frustrating week

We have been here long enough now to encounter some frustrations that patients normally do not encounter during a hospital stay.  Basically, there are so many different teams involved in Anna's care that switch attending physicians and/or residents on an often weekly basis, but she does not have an overall care coordinator.  Plus, since she is not needing critical care while on the PICU, her nurses are often different.  When you are watching someone's neurological status very closely, consistency with the "watchers" is key.  Neither Matt nor I can be present here 24 hours a day 7 days a week, and we can only communicate so much with one another and the nursing staff about what different days are like.

So ... Thursday night Anna's EVD was leaking fluid.  The PICU team thought this was a pretty good sign that her body could not handle the pressures inside her brain; the neurosurgeon thought otherwise.  Either way, the site around the drain needed to be sealed up; if fluid could come out, stuff could also get in ... not good.

Anna was up for a procedure on Friday morning to have the area around the drain sealed off a bit, but because of the way her skin was leaking/healing, it was not possible to just put in a few stitches.  So her EVD was removed to see how she could do.  That meant that her neurological status needs to be watched closely for a few days.  If she shows signs of increased pressure, then she needs a shunt.  If not, then she doesn't.  But no one knows how long it may take for her to show clear signs.

Friday afternoon and Saturday Matt was with Anna.  She had a nurse on Saturday who had previously only been her nurse at night.  Both were concerned on Saturday that Anna's status was declining.  She was more nauseous, seemed more tired and less interactive, and complained off and on of head pain.  So she had another quick brain MRI to see how things looked on the inside.

There are so many layers to Anna's mental status every day that it is difficult for even Matt and I to correctly assess her neurological status.  We may be the experts on Anna, but we are certainly not medically trained professionals.  How do we know if she is throwing up because of something going on in her brain, because of one of the meds she is taking, or because her body just cannot tolerate her feeding regimen?  How do we know if she is tired because of something going on in her brain, because she hasn't slept normally in three months, or because she physcially exerted herself?  And if we don't know, how will a doctor who only checks on her for less than 5 minutes once a day know?  To make matters even more challenging, the day before Anna was diagnosed with brain cancer, she was perky for a few hours in the morning, playing cards with me, and even asking to eat some food.  But that was just a high point during an otherwise downhill kind of day.

And then there are the "politics" of the different teams interacting with one another.  We were completely unaware of this even a month ago.  Now, unfortunately, we are aware that in a hospital, just like in any other workplace, different teams have different reputations.

(The above rant was written while I was waiting somewhat impatiently to hear the results of the MRI and find out where Anna would be sleeping tonight.)

Anyway, I just found out (because our nurse advocated for the higher ups to come and talk to me) that Anna's MRI from this evening is unchanged from her one from Wednesday night.  Good sign.  She will be allowed to sleep in her room tonight, but tomorrow will be moved back to P4 ... hooray!  Except that means all of the staff over there will be educated on all of the stuff that has happened in the PICU in the last month.  Most of them already know the basics, but still ... another transition.  At least it is a step in the right direction, we hope.

Time for prayers

Thanksgiving
Please give thanks that Anna, so far, does not need a shunt.
Please thank God that I get to sleep in a sleep room one more night (instead of in the room with Anna).
Please give thanks for vigilant parents and nurses, as well as the rest of the hospital staff who are continually caring for Anna and our family.

Requests
Please pray that Anna really, truly does not need a shunt.
Please ask God to strengthen Anna's body each day.
Please pray that all the pieces of Anna's care are soon resolved.
Please ask God to grant our whole family strength, peace, wisdom, rest, and hope.

Thanks, as always, for everything.  I'm going to bed now.