Thursday, April 11, 2013

Hospital Life...Day 17

Today is Day 17.  Peyton has now passed up the previous record for her longest hospital stay.  This was not a record we set out to achieve, but here we are.  If you missed the Day 16 update, you can read that HERE.

In some respects, today was a quiet day.  There wasn't a whole lot going on aside from just watching Peyton and making sure nothing new came up.  She began TPN on Day 16 and so that continued today.  Her new bag for today was hung this evening.  It's a different color this time.  Not sure what the difference is.

Peyton did require another bolus of potassium via IV.  Most of her meds that are given through her g-tube have been converted to an IV formulation, so there is less going into her stomach.  Her tube feeds are running at only 5 mL per hour just to keep things stimulated.  Labs were drawn late this afternoon. They will check all her numbers and readjust things where necessary.

Today and yesterday were "good" days.  I feel like I need to be cautious how I say that.  By saying "good", I feel like that gets hopes up way higher than they should be.  It's a bit deceiving to see her laying in bed looking "good" all while knowing that this is a very sick child.  The term "good" is also relative.  Had you been here a few days ago or a week ago, you might think she looks wonderful.  But if you were to walk in right now and look at her, you'd probably think that she looks like a sick little girl.

The day was also a little "heavy".  This morning I met with two people from Hands of Hope, which is a part of Hospice Care of South Carolina.  Hands of Hope was suggested to me by not one, but three people in the past week or so.  The reality is {and I'm sure everyone reading this is well aware by now} that Peyton is very sick.  Short of a miracle here on Earth, there's no "fix" for the things that are wrong with her.  That said, we do not have a timeframe.  Doing TPN isn't a "fix".  There are a lot of issues at play, not just the GI issue.  

I think hospice care is generally assumed to be extreme end of life care.  This organization has the appropriate health care and social workers in place to provide services to the patient and their family during a "life limiting" illness.  It is only recently that the state has allowed what they call "concurrent care" for pediatric cases.  That is, allowing hospice care to co-exist with the regular home nursing care that Peyton receives through her Medicaid waiver.  Her nursing should not change.  Hospice comes alongside what we already have in place to offer additional resources and support.  They make home visits at least once a week.  The scope of what they do changes as the illness does.  They coordinate with the medical team.  They assign one doctor as a point of contact to assist in coordinating the case.  The nurse who visits each week can report back to specific doctors on the team if there are any changes.  They can help to establish the need for ER visits when necessary.  The goal is to limit that.  They offer child life services as well.  They help transition the whole family during this time.  There is so much that they have to offer the family.  I am not sure if Peyton can be admitted while she is still in the hospital right now or if it has to wait until she is discharged, but the plan is to get her into this program assuming we get to the point of heading home.

I met with someone from our church's pastoral care ministry.  It was so good to talk to her and I so appreciate her coming up here to talk and also to pray for me and for Peyton.  

Thank you to my Dad who brightened the room today with the beautiful flowers he sent for Peyton.  Thank you!!  They are absolutely gorgeous.

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