Thursday, March 28, 2013

Ever since we came to the hospital for surgery in mid January, we have had a difficult timeline.   It has seemed like about every two weeks, usually just as we thought we were getting close, someone would tell us that it would be another two weeks.  Our most recent timeline was more carefully deliberate.  I had insisted on a family meeting to make achievable goals, if not a timeline, for discharge.  Being in the hospital is hard.  Being in the hospital pregnant is hard.  Being in the hospital, pregnant and with no end in sight was getting to be more than I could do.  So about a week ago (don't press me for a real date, I have been losing weeks- I only know how far along I am when I go to my OB and he reminds me.) a meeting took place.

The lead up is important.  The night before the meeting, Lily left the hospital with Josh.  She went up to the doctor on her way out.  "Sarah needs to go home."  

Waffling a little, "Well, she needs to get better and..."

"No.  Now."

She was not angry.  But she was forceful.  My goal for the meeting was roughly the same.  I wanted to demand that she send us home.  I wanted to be clear and forceful, but not disrespectful.  She is a good doctor, just moving more conservatively than I felt was medically necessary.  I also wanted it to be 100% clear that if my choice was to stay in the hospital for three more weeks or go home and make the same progress in six months, I wanted six months.  I am OK with going home on a vent.  Emotional needs are not less important than medical ones, and we need to be together as a family.  

At the meeting, everyone put all their cards on the table and the social worker played the role of counselor.  She made sure everyone was being heard.  The doctor basically said that we had too many balls in the air to go home.  The vent settings and wean were the biggest, but not the only.  We are still weaning sedation.  She is willing to send Sarah home weaning one sedation medication slowly, but not two and to send her home on a sedation wean, she wanted to have started the wean in the hospital and seen no signs of withdrawal.  Withdrawal is awful.  (I have a new found respect for any addicts dropping their habits, having watched the pain and frustration of withdrawal- and this in a very controlled way where we could give an extra dose when needed.)  

The doctor also really wanted to meet her respiratory goal for Sarah in the hospital, which is no ventilator support.  She said, "I went home and thought very seriously about this. "  (Good job Lily!!)  "I think that the second week of April is a good estimate."

She did not say two weeks!  It was over three.  

We did go back and forth a bit.  Is there wiggle room?  (No.)  Can we wean at home?  (No.)  

I told her that I could not disassociate Sarah's medical wellbeing from my family's.  I told her that if she did not get us home in a hurry I was going to deliver a baby in her (children's rehab) hospital.  I told her that I thought we could wean more aggressively- and it was not just my opinion, but the opinion of most of the respiratory therapists that had worked with Sarah.  I did not cry.  

Josh has been working twelve hour days, and due to a scheduling nightmare, he had seven shifts in a row.  Palm Sunday fell in the middle of a particularly rough week for us.  On Monday, Lily had not been sleeping because she missed me.  I had not been sleeping because Sarah's monitors were going off all night- although she was fine.  I found out that what I thought was going to be six days, was going to be seven.  The difference between six and seven may not sound like much, but it is.  

So, I decided to leave Sarah alone in the hospital for a night. I knew it would be hard, but I did not know what else to do.  

A friend had sent a gift: a relic of the true cross.  

I found some string and I tied the relic and the medals to Sarah's bed, along with a cross made from Sunday's palm leaf. I said a prayer and I left.  Lily and I slept well.  

The next day, I found out that Sarah had had a terrible night, as I had expected. She had been inconsolable until she fell asleep from exhaustion, at which point she had some apnic events, presumably because she was so tired. It might have been discouraging, but for the good news: the good news was that in spite of it, the doctor moved up her discharge date. We went from a vague hope of the second week in April, assuming no events or setbacks, to April fifth.  The events are unrelated as far as I can tell.  The doctor decided she could speed up the sedation wean, slightly, and the respiratory therapists had been advocating for a more aggressive respiratory wean.  Sarah will be "medically ready" on April fifth.

We need prayers.  Sarah has all kinds of new home care needs.  We will have home nursing and a whole bunch of new equipment.  We are taking home a ventilator and everything that comes with that.  (A lot!!)  Trache supplies.  A new chair.  A stander.  A bath chair.  A suit which is made to help support her core.  Braces for her legs and feet to support her in the stander.  We need more insurance.  So, we have been applying for the various programs.  I will not get into the nitty gritty, in part because I cannot understand it all, but it has been a confusing and frustrating battle getting the coverage she needs.  We were denied for the program we expected to get into, and approved for a program which we thought would automatically deny us- but the approval is temporary.  If we are still here after the fifth, it is far more likely to be paperwork than medical needs holding us up.  The case manager is good, and she is working hard.  We are very hopeful.  

We will not be home on Easter Sunday.  But we should be home for Divine Mercy Sunday!

Sarah is flourishing.  Despite my frantic worries, Sarah is doing really, really well.  Under the care of some amazing therapists, she is learning more and more every day, and it delights her.  She has been a wonderfully happy kid, working ever so hard.  She amazes me.  She has charmed the people who worked with her here.

The paperwork terrifies me.  The newest (still not born- due early May) baby is growing so fast .  We still don't know what we are going to do about a car for three children plus equipment for Sarah.  These are the worries that keep me up.  But to keep it in perspective: All three of my girls are remarkably healthy.  We will be home soon.

Thank you for praying with and for us.

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