A Little Better?

I *think* that there is a possibility that today is a better day!  I think.

Peyton did well overnight.  She woke up a little earlier than she has been the past several days and she started fussing with her bipap mask on.  I realized that if she's fussing now with the mask, she must be starting to feel better.  She's been having to wear it pretty much 24 hours a day for the past several days and hasn't fussed one bit.  You can bet that means that she doesn't feel well.  She fussed a little more while she was being cleaned up and having her bedding changed.  Again, I take all that as a good sign.

We are hoping that today they will take her off another antibiotic, which will, at this point, leave her on only one of the original four antibiotics.  It's been 7 days or so of antibiotics, and since they haven't found anything, they've been peeling them away a little at a time to see how she does.

She had an EEG the other day and an MRI yesterday.  As expected, all of that was normal.

The one thing that's come up that is a little concerning is that she is getting more anemic.  She is usually a little anemic and she takes iron supplements twice a day.  However, her numbers here lately have been dropping a bit.  They are going to give her til the morning when they check her blood again.  If she drops to a certain number, then she will wind up having to have a blood transfusion.  She's never had one before, so that's a little concerning.  And, no, I cannot donate for her.  There's a whole process that would take days to get through.  But I will say that this is a great opportunity to learn the importance of donating blood.  It would be a great thing to consider!  Next time you hear about a blood drive, would you consider taking the opportunity to give blood?   I know I will!

That's about all there is for now.  I will keep you updated.

Still a Mystery

Things did not improve much over the course of yesterday.  I think if she had been left alone, Peyton would have slept all day.  Of course, she wasn't able to do that.

Peyton's face and feet seemed pretty puffy, which is always a concern, but particularly with cardiac issues.  They ordered an echocardiogram and apparently, based on what I heard this morning, that seems to be ok.  

Dermatology came in and checked her rash and bruising.  No answers there.

At one point, the doctors had been called back because Peyton just wasn't perking up and the swelling seemed to be worse.  Between that and some other issues, they decided to call the PICU doctor to come down and take a look at her.  She felt that whatever is going on with her is not respiratory an is likely neurological (heard that before).  She ordered an EEG.  That was done last night.  I haven't heard any results from that, but with the way things are going, I expect to find that it was normal.

I just have to take a minute to thank the people who have helped us out, particularly with Moira over the past few days.  It really means a lot!  Thank you!!

I have heard that Peyton may be going for an MRI today.  I'm not entirely sure.  I will, of course, be keeping you updated.

Remember Last Month?

Today was going along just fine, although Peyton was pretty irritable and her heart rate was a bit higher.  The doctors made their rounds and we were sharing all our concerns about her.  They left the room.  The nurse came along.  He was in the doorway at the cart {they have carts in the hall with their computers and some meds/supplies are also locked in there}.  I lifted Peyton up into a sitting position so I could make adjustments so she'd be more comfortable.  Almost immediately she kind of threw her head back and was staring off into nowhere.  Then things seemed all to familiar.  Remember when she stopped breathing last month for about a minute??  It was happening AGAIN.  I called to the nurse who called down to the doctor who was still in the hall but up a bit.  Everyone came in.  They didn't call a MET but someone asked if they should.  The episode lasted about 30 seconds this time.  I was able to grab for the suction while the nurse got her oxygen going.  The doctor was just seconds behind coming into the room, but she was pretty well through it when she came in.  Her heart rate was elevated, although it has been all day.

More discussions ensued about what's going on with Peyton.  They still don't know.  More discussions ensued about what to do with Peyton.  She had been taken off one of four antibiotics that she's on, but they began discussing putting her back on that.  They were going to stop a second one, and the orders to discontinue had actually been put in.  They cancelled those orders and have continued.  She's on 3 antibiotics that I know of for sure.  Not sure about the one that was d/c'd if that will come back or not.

I described what happened to the doctor and stated it was exactly like the episode last month, only not as long.  It is possible, as I thought last month, that it could be seizure-related.  They are going to talk to neurology and get their take on it.  She may need an EEG.

The pulmonary doctor was consulted after this and this was him finding out that she was even in the hospital.  He was not impressed.  I don't blame him.  Actually, as far as I was concerned, he had been contacted because I heard someone say that they were going to - either in the ER on Tuesday or in her room Tuesday night or Wednesday morning before she had the episode that sent her to the PICU.  Anyway, he's on the case now and his suggestion was for her to wear her bipap 24 hours a day to help keep her airway open in the event this happens again.

Because of what happened, it was decided that Peyton would be moved to the PICU stepdown unit.  So we are not where she was on Wednesday {thank God}, but she is being more closely observed here.  Not that she wasn't before...but there's more constant monitoring in the stepdown unit.  She's on the full monitor rather than just the pulse ox monitor which only measures oxygen and heart rate.

Nothing had been mentioned yet about going home, but now that we're over here, it's definitely going to mean a longer stay.  I don't know what is going on with Peyton, but I believe there are multiple issues.  If anyone from the show "Mystery Diagnosis" wants to weigh in, I'd be more than happy for them to!!

As always, prayers are appreciated!  Please keep Moira in your prayers too.  This stay is really weighing on her.  She was unable to go somewhere today because of Peyton being in the hospital so she was upset about that.  She's worried about Peyton.  Seeing Peyton in the PICU, even if only briefly, was scary for her.  It was scary for us!!  

I'll keep you posted!