Hospital Life...Day 22

Today is Day 22.  You can read the two parts of my Day 21 post HERE and HERE.

Today was a semi-quiet day.  I say that mostly because Peyton has been sleeping almost the entire day.  I think yesterday was pretty difficult for her with her new leg issues.  Her day today did not start off well either.  She was awakened only to go right into her respiratory treatments.  She was not wanting any part of that this morning and we all knew it.  Poor baby.  Fortunately, her repositioning in bed and her treatments coincided with her dose of morphine, so I hoped she wouldn't be feeling too much pain for long.  Between her leg and her shoulder being constantly dislocated, I feel so awful every time I have to move her in any way!

This is Peyton's leg as of this evening:

There's not a huge change from this morning.  In fact I would say that there has been no change today.  Between last night and this morning, though, I would say that it may be every so slightly improved in that it is not as "angry" looking.  It's definitely red.  It's also still pretty warm.  It also looks more inflamed.  There is still a lot of concern for her leg.  If there is an infection present, we have no way to know how deep the infection runs.  Is it just in the tissue or does it go into the muscle or the bone?  

The attending decided that we should probably have the doctor from Infectious Disease take a look and give his opinions.  We go way back with this particular doctor.  In fact, he goes to our church so we see him fairly regularly.  A year or two ago, Peyton had gone through a period of respiratory illnesses which would not go away no matter what course of antibiotics we tried.  We say the ID doctor and he took care of her for a while.  Now he is back on her case with this leg issue.  The thing with the leg infection is that if it is just in the tissue, it's a 10 day course of antibiotics.  If it is in the bone, then it means 8 weeks of antibiotics.  So, they definitely want to figure out where the infection lies as there is a huge difference in the treatment plan.  The problem is that right now there is really no great way to figure this out.  Peyton is not a good candidate for sedation right now, and if she were to have an MRI, she would most likely require sedation.  She isn't moving that leg around a whole lot, so maybe there is a way they can try without sedation.  I don't know.  They will speak with whomever they need to speak with to figure out the best course of action for Peyton.  Right now, her leg is a main priority and, as far as the main resident is concerned, we're not out of the woods with her leg yet.

Just before the ID doctor came in, one of the people from the Hands of Hope hospice program stopped in to check in on Peyton.  She can't be officially admitted into the program until she is discharged to home, but she wanted to check in and see what has been going on since we last spoke.

Many thanks, again for all the love, prayers, support, and so on.  We truly appreciate everything everyone is doing.  If you are new here, welcome.  And thank you for your prayers for Peyton!

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.