Empty

We are empty here at the Mischnick home.  Physically, emotionally, spiritually.  Just empty.

This last week we made the decision for me to be at the hospital all week because we thought it would be the final push of our time apart.  We were coming to the end of this extended hospital stay, only to find that we will need to go on this way indefinitely.  Sigh.  Early last week I had the thought to ask a friend who has run marathons how you run the last few miles of the race; I wanted to see if she had any words of advice to get through the final push.  And now we have to keep going.

I've had a wide range of emotions since Thursday.  Thursday I was very sad because Anna was doing poorly again.  I thought at the time it was because of the radiation side effects or because of cancer spread, but now we know it was because she was starting an infection in her cerebrospinal fluid, as well as in her abdomen (that's where the shunt drained).  Think about that for a minute.  The fluid surrounding Anna's brain and spinal cord was (and still is) infected and inflamed ... as well as fluid in her abdomen ... on top of everything else she has been through.

Friday morning we were scared because no one knew yet why Anna was going downhill again.  I called Matt within minutes of getting to the hospital asking him to come join me; I didn't want to face the uncertainty of the day without him.  We had to find coverage for the other kids since Matt was planning on being home with them, but it didn't take too long for it all to get sorted out.

When the diagnosis was made, of course we were relieved because these kinds of infections can be treated.  But by the end of the day, I was frustrated again because we had to deal with the transition back to a different room, different nurses, residents, and doctors with whom we haven't worked in awhile.  They are the experts on "critical care", but not necessarily on hematology/oncology.  So we have the added role again of trying to make sure everyone is on the same page about Anna's needs and we are working with a different nurse almost every shift.  Sigh.

In addition, we are very, very disappointed because in the coming weeks we have to be even more apart that we have been lately.  Because many decisions and changes may be made this week, Matt and I want to make sure that we are the ones physically at the hospital with Anna.  And since we aren't as comfortable with these nurses yet, we plan on staying overnight at the hospital each night this coming week.  Sigh.

Today I was angry.  It's really, really, really not fair.  We knew that setbacks in treatment were common, but this has the potential to be a long setback in terms of any plans to go home ... most likely weeks.  And as long as Anna has the drain in place, she won't be granted much freedom of movement outside of the PICU ... day passes on the weekends are no longer an option nor are field trips around the hospital.  In addition, we have to call the nurse in every time Anna needs repositioning so they can appropriately adjust the height of the drain.  I already miss the independence we had earned back on P4.

Anna is pretty angry, too, understandably, but I'm not sure that she's going to remember much of the last few days because of how high her fever has been.

Matt stayed with Anna all weekend to give me a chance to be away from the hospital and be with the younger kids, and to give him and Anna a chance to be together.  But that meant that Matt got zero "weekend time" between work on Thursday and work on Monday.  I took Kate and Ethan to the hospital this afternoon so we could trade off responsibilities.

The younger kids and I were able to enjoy the nice weather yesterday by going to a neighborhood park in the afternoon and spending as much time outside as we could possibly handle.

Here's our smiling guy.  Too bad he's also discovered that he can have a pretty strong will when he wants something, or doesn't want something that we think he needs (like a diaper change).

Kate and Ethan have gotten much closer in the past few months; they can be pretty sweet together, but can also get on one another's nerves at times.

 

Kate was a big help at the house last week with Grandpa and Grandma; I think she enjoys the responsibility of showing people where things are :)

  

Tomorrow morning Anna's radiation oncologist is going to make an assessment to see whether or not it would be safe to continue with the radiation treatment.at this point.  Depending on what she says, tomorrow may have many different possible outcomes.

We have had to adjust our lives many times in the last few months, trying to find a way to deal with a new reality.  This transition seems to be harder for me than the others.  I know we'll find a way to deal with the changes in whatever way works best for our family, but right now I'm having a hard time finding the "silver lining" in our new circumstances.

Please pray for strength, peace, and healing for us all.