Monday, January 14, 2013

In Sickness and Frustration

The past 24-36 hours with Peyton has been concerning to us.  I will say up front that she is at home - not in the hospital, so that's good news, right?!  I've talked about how she is requiring oxygen during the day while she's awake.  This has been going on over the past 2-3 weeks.  This is unusual for her.  There's no known reason for this to be happening.  From time to time she will manage to remain on room air, so that is good, but mostly she is requiring oxygen.

For the past day or so, however, she has had lower oxygen levels and a higher heart rate.  The heart rate began increasing further this morning and early afternoon.  It's typical for her heart rate to be in the one-teens but it's been in the 120s.  That's not so bad.  A little high for her, but not horrible.  This morning right off the bat it was in the mid 130s-140s.  It got up into the 150s.

Today was a frustrating day of "hurry up and wait" while I exchanged emails with one clinic {Pulmonary} and then another {Cardiology}.  She's not "sick", although she's had a bit of a fever today.  She's not exceptionally junky sounding - no more than "normal", but she's been on antibiotics for the past week just in case something was brewing.  Some of these symptoms were present last week when she went to the Pulmonary clinic.  It's just that things have worsened a bit over the past day or so.

The nurse practitioner in the Pulmonary clinic relayed messages to the doctors and got back with me.  They think that it's possible that the low oxygen saturation is possibly caused by mucus plugs in her lungs or atelectasis.  Please don't freak out when you click the link and suddenly see the words "partial lung collapse".  Read further where it refers to mucus plugs.  She does not have collapsed lungs, partial or otherwise!  As for the heart rate, they suggested getting in touch with Cardiology.

I wrote up yet another email and submitted that on MUSC's online system.  And waited.  I honestly wasn't sure I'd hear back today.  All day long, I was expecting to have to bring Peyton to the ER but by this point I was thinking we probably wouldn't be going.  In the end, the Cardiologist did email me back but he didn't think it was anything related to her mitral valve issues.

Frustrating day.  One specialty defers to another and that one defers back to the first.  In the end, I don't know that we got anywhere.  Peyton's issues remained throughout the day.  Pulmonary did suggest that being on BiPap would be the one thing worth trying to help with the oxygenation issues.  We haven't had much luck at all with getting her on BiPap lately, so I wasn't sure what we'd do.  However, between the nurse and I, we got her on BiPap and she stayed on for maybe about four hours total - portions of that time were enve while she was awake!

As Peyton is about to go to bed now, she's got a low fever still, her heart rate is up, and her oxygen is a little lower than normal, but her monitor isn't alarming...yet.

As for our nursing issues, we are getting our hours but they are piecing together several nurses to make it happen.  Great to get the hours, but it probably isn't in her best interest long term to have so many people in and out of here, especially when some work in hospital settings as well and others have other patients that they work with in their homes.

Please pray with us for healing for Peyton and for a good resolution to the nursing issues.  I'll keep you posted on how things go here.  As I said, it was a rough day.  I feel like this will just continue until we finally just have to bring her to the ER regardless of what the specialists thoughts on the matter are.

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