Thursday morning

I wanted to do a quick post this morning to get some specific prayer requests out before the day really begins.  As I've said before, an uneventful night on the PICU is a good thing.  In terms of Anna's overall health and safety, last night was a good night.  She was able to rest a bit better, probably in part because she was cleared to have some Benadryl.  All of her "normal" signs and processes are mellowing out.

However, her ICP numbers were up a bit and she was complaining of a bad headache at the same time.  To understand this better, I need to give a bit more background information and detail.  As I said before, Anna's initial ICP numbers were pretty high because the tumor was blocking the normal flow and circulation of her spinal fluid.  The pressures leveled out a bit after the ventricular drain was put in place last Monday, and then even more so as she has recovered from last Wednesday's surgery.

On Monday morning the drain was "clamped", to see how well Anna's body could control the re-absorption and recirculation of the spinal fluid.  For most kids with brain surgery, this is not a problem and after 24-48 hours, the drain is removed.  However, Anna's case is different because of how the cancer is already spread and distributed around her central nervous system.  The doctor isn't sure that Anna's body will be able to deal with the recirculation of the spinal fluid.

After the neurosurgeons learned about the headache and elevated ICP numbers, they ordered an MRI for bright and early this morning.  Anna was awakened before 6am and wheeled down to the MRI floor.  The pictures were taken and she was back up in her room by 6:30.  With all of Anna's previous MRIs, she was always sedated; this was the first one for which she was wide awake.  She did AWESOME!  I was able to be with her up until they wheeled her into the actual MRI room.  She stayed very still and calm, even though she admitted to me afterwards that she was scared by the loud sounds.

We're awaiting the results and further instructions.  If it turns out that Anna's body can't handle the spinal fluid processes, then the doctors will unclamp her drain and she'll have a shunt placed sometime this weekend.  I've been reassured that this procedure would be quite easy, especially in comparison to all that Anna has been through in the last few weeks.

Otherwise, since I've been back here at the hospital with Anna, she has been much more like herself.  Hooray!  Granted, if any of us were tired and in pain and unable to do the things that we always used to be able to do, we'd be pretty grumpy.  However, Anna seems to be working through some of her frustrations.  We looked through cards and pictures last night and had some otherwise good and healthy conversations.  She is sounding more and more like herself every day, both in the words she chooses to use and in the sound of her actual voice.  Ethan was able to get a bit of a laugh out of Anna last night when he was here pushing the wheelchair around her room, and Anna was downright cheerful for a period this morning, smiling at some of the jokes I was making during her breakfast :)

The plan for today includes the ICP stuff as well as working with Anna on her nutrition.  Basically, she is in the process of being weaned off of the feeds.  After having recently gone through the weaning process with Ethan, it sounds like it's very similar, but will happen in the matter of a few days, instead of 6 months.

Also, we decided to go with the proton treatment in Chicago.  Thank you to those in the Chicago area who have offered up your homes to our family.  However, there is actually a whole team of people whose job is to help us with housing.  We'll get the word out if we need help, but I think we're in good hands :)

Time for prayers

Thanksgiving
Please give thanks that my mom had strength and wisdom yesterday while she was here with Anna; she did an awesome job interacting with everyone.
Please give thanks that Anna can now have Benadryl to help her rest at night.
Please give thanks that I was able to rest relatively well in her room last night.
Please give thanks that Anna is feeling hungry and wants to eat.  Even though she'll be taking baby steps with her foods, she just told me "I want cherry tomatoes.  I just want to eat meat!"
Please give thanks that Anna was able to weather the MRI stuff this morning so well.  Knowing that she can handle it awake will make the next months and years easier.

Requests
Please pray that this whole ICP stuff gets cleared up safely and easily.  Whether or not Anna needs a shunt put in, we just want it to go smoothly.
Please pray that Anna can sleep some this morning before her therapies start.
Please ask God to be with Matt and I this morning as I try to guide him through a grocery trip to Woodman's.  Help us to find humor in the situation :)
Please ask God to continue to reveal His presence to Matt and me during this journey.
Please pray that we are able to get a good case manager with our insurance company; that will make one aspect of life much easier in the months and years to come.

Thanks again for everything.  As we look for things to be thankful for, one that comes to mind for me is at least this hospital stay is happening during one of the cruddiest times of one of the cruddiest winters.  It's not like we're missing out on spring :)