The Latest on Peyton

As I mentioned last time, the big goal was for us to get to Monday (yesterday) to see if Peyton would finally turn a corner with the two IV antibiotics that she is on.  I did see a little improvement in her on Sunday and even Monday for a short time.  I even emailed the pulmonary clinic's nurse practitioner and explained how things were going.  And then Peyton started with a low grade temperature...again.

Today (Tuesday) she was extremely fussy all morning.  No temperature today though.  She's wavering back and forth between being sick and being pretty sick.  There's never a point where we say, yeah, this is it, she's on the upswing now!

I've said to Ron and to others that we really need to see an absolute answer to the situation.  She either needs to improve significantly enough so we don't have to worry about making the trip to Boston in 11 days.  Or she needs to get sicker so it's clear we should not go.  Obviously we don't want the latter.  We just need for the decision to be easy - that we won't leave home second-guessing our decision - or stay behind second-guessing what might have been either!

The hardship of this week has really gotten to us.  I admit that very candidly to you.  Having a 2/47 caregiving role is not easy.  I am not superwoman.  I am not supermom.  I don't have an endless energy reserve from which to draw on.  I sincerely wish I did.  The fact of the matter is that this IV med schedule is so incredibly taxing on me.  I am pushing myself beyond my limits at this point.

Does Peyton need to be in the hospital versus being cared for at home??  Well, that is the big question right now.  To look at her, you might just say no.  Bear in mind, most "normal" sick people aren't on IV antibiotics, much less TWO of them to cover an illness...especially at home!  For Peyton, this is not the absolute sickest I have seen her.  For Peyton, she is not the healthiest I have seen her.  She's been sick for probably close to a month/month and a half now.  She has the advantage of having a port, which means she CAN have these meds at home and not in a hospital.  But having a port is not without its difficulties, as I've shared before.  She was just in the hospital a week or two ago because of a port issue.  

She's sick and she needs to get significantly better for us to make this trip.  Would she be better served in a hospital at this point??   I don't know.  There are pros and cons to the hospital, just as there are to her being cared for at home right now.  The biggest factor contributing to us leaning towards having her admitted would be my sheer exhaustion.  Yes, we have home nursing.  But for whatever reason (and it's not an issue with the company...it's home nursing in general), the RN's who care for Peyton at home are NOT allowed to handle ANYTHING to do with her port.  That means I am STILL the one handling all of that throughout the day.

Want a recap on what this means for me right now??

6am - Make sure I'm awake enough to stumble to the fridge to take the meds out.

7:20am - Hopefully I've managed to grab a shower by this time.  This is when she needs benadryl (she has a reaction to the Vancomycin called "Red Man's syndrome" - not a true allergy, but requires she be pre-treated with benadryl).

8:00am - Flush and hook up Vancomycin (IV med) to her port.

9:15am - Unhook and flush. Hook up Tobramycin (IV med) to her port.

9:45am - Unhook and flush and heparinize her port.

Next round is 2pm, 3:20pm, 4:00pm, 5:15pm, 5:45pm.

Next round is 10pm, 11:20pm, 12:00am, 1:15am, 1:45am.

I have about 10 alarms set on my phone.  Last night I woke up at 1:15.  That would be the time I'd be switching over from the Vanc to the Tobra.  BOTH meds were still sitting on the bathroom counter.  Hadn't pre-treated yet either, so at 1:15 this morning I was starting the round that would have begun at 11:20pm last night.  The bonus was that I got to stay up the 30 minutes til 1:45 when I could actually start the Vanc.  That delayed everything else and caused me to have to push back the morning stuff too.  When my alarm goes off, if I don't turn it off, it goes off every 5 minutes.  I'd slept through my alarm going off every 5 minutes from 11:20pm til 1:15am.  THAT is how tired I am.

So, yeah, there is a certain advantage to Peyton being IN the hospital.  Right now, I'm not sure that what we'll do, but it's an option to consider.

Boston is 11 days away and we're desperately needing prayers.  Is this trip ABSOLUTELY necessary - of course not.  BUT...her orthopedist here basically wrote her off a few weeks ago and wanted nothing to do with the pain issues Peyton is having.  She is having REAL issues that needed addressed by someone...and it isn't happening here.  There is so much that could (hopefully) be made better for her if we knew what to do for her from an orthopedic standpoint.  It's a long story, but if she had more muscle tone and more control over her body, her core would be stronger and maybe it would improve her respiratory health even a little.  THAT is worth finding out about.  THAT is worth making the trip.  I am afraid that if we don't get to go I will always be left wondering "what if".  THAT makes it worth praying as hard as we possibly can for this to happen.  Peyton is worth every ounce of prayer we can pour out for her so we can do our best by her.

As it is right now, she is to remain on the IV antibiotics til Monday and we'll see what happens then.  She NEEDS to be significantly better by then.

We are so grateful for all your prayers and support.  Thank you!

*Note: I should clarify something.  The trip to Boston is when it is because school starts up on the 20th.  Moira needs to be back for school.  Peyton's in school, but "homebound".  Once school starts, we can't just take off for a week.  We cannot fly with Peyton - there is too much to bring that she requires.  I cannot drive by myself with her for so many reasons.  The logistics get much more difficult after August 20th.