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.

Not Well At All

This morning, Peyton seems to be a little worse.  When I woke up, she was covered in multiple blankets.  Her temp was apparently low overnight (low 96's).  She's been wearing bipap continuously the last couple days.  She was going to be going down to xray, so she was switched to a nasal canula for transport.  When I took her mask off, we noticed her face was very puffy.  She's also pretty lethargic today and her mouth is pretty dry.

We went down to xray, which turned out to be a non-event.  Whatever was ordered was apparently called off for now, so after getting her all situated on the xray table, with oxygen tank and hooked up to the monitors, we had to get her back into her crib with all of that stuff to head back up to her room.

The doctors were by this morning.  While they were out in the hall, I had to suction Peyton.  What I got out was unreal.  Her secretions are SO thick they are almost solid.  There are mass quantities.  They are also darker yellow now.

She is not as well today as she was yesterday.  We don't know what is going on.  I am trying to be strong, but this is unreal.  I don't blame the doctors for not knowing what's going on with her.  They are doing all they can with what they know.  She's on 3 antibiotics.  She' s on IV fluids.  I don't know that there is more that can be done but I just wish we knew what we were dealing with!

Dermatology is supposed to come by to look at the rash on her hand.  Cardiology is now being consulted because of the edema (face/feet).  Infectious Disease is still weighing in.  GI is on board because of the bleeding from the j tube.  She's on the Peds service, although the PICU docs were there for her last week and they are aware of her being in the stepdown, not to mention that they were there for her endoscopy yesterday.  Ortho consulted regarding her dislocated shoulders.  Neurology has been involved as has Neurosurgery.  And Pulmonary is also involved.  That's 10 specialties in case you didn't take the time to count.  11 if you count the Dietician.

So, I would say that they are covering all their bases.  I wouldn't concern yourself with thinking that they aren't doing everything they can at this point!  :)

As always, I will keep you updated.

Dislocated

This morning started out with Peyton preparing to go up to the PICU to have her endoscopy that the GI doctor wanted done.  {They sometimes do procedures up there.}  We went up a bit after 10am or so.  The doctor was ready, as was everyone else, but there were technical difficulties with the endoscopy equipment.  Technology is great, but sometimes....

The procedure finally got underway around 11:30 or so.  I waited in the family lounge waiting area just outside the PICU.  When it was over, the doctor came out to get me and we went back to Peyton's bed, which was diagonally across from where she'd been on Wednesday/Thursday last week.  She was also directly across from the non-stop lullaby.  {If you follow me on twitter or facebook, you may have seen me post on Thursday that I'd been listening to Brahms Lullaby for about 15 hours straight at one point.}  Wouldn't you know it, the lullaby was on a continuous loop again.  Joking aside, it sounds like that child {not sure how old - closer to baby age than Peyton's age I think is having a pretty major surgery in the morning, so if you could say a prayer for her, I'm sure the family would appreciate it.

The scope went well and there was nothing major discovered, which is good.  It does seem that perhaps the "j" tube may be a little large and she will need to have the whole g-j tube changed out for something a little smaller and less likely to cause this irritation.

While she was recovering from the sedation up in the PICU, one of the residents came by and he said the radiologist had read the xrays from yesterday and she noticed that one of her shoulders was "strikingly" dislocated and she wondered if we were aware.  I explained to him that yes, Peyton's shoulders dislocate ALL the time.  I explained how we rotate her arm and get it back in or she manages on her own somehow.  She's just that loose.  After we were back up in Peyton's room, ortho came down to take a look.  Sure enough, at that moment, both shoulders were dislocated.  The doctor manipulated her shoulder back into place using the usual method of traction/pulling/rotating.  By the time he left the room, I think he re-set her shoulders 4 times.  They popped out that quickly.  He wanted xray to come and get images to be sure they were still in place.  Xray came...but I told them I'm pretty sure I can tell you right now without xray that both shoulders were right then dislocated.  They just dislocate THAT easily.

Peyton has been wearing her bipap day and night since Saturday's apneic event (that's what they're calling her "stopped breathing" event).  There's a possibility that they'll try to wean her off of it a bit starting Monday.  Normally she only wears it at night when she's asleep.  Right now it's day/night regardless of whether she's asleep or awake.  I can't imagine wearing it while awake!  Since it gives a breath if she does not breathe, that's why she's having to wear it.

I honestly can't think of what else is going on right now.  We're still in the PICU.  Moira's been home for the past few days.  I haven't seen her since Friday.  It's been a bit difficult for her this time around.  We still don't have any answers for anything.

Will keep you posted.

Update

Just a quick update.

Neurology wanted Peyton to have another head CT done.  She just had one Wednesday but since there's the possibility that her episode this afternoon was seizure related, they wanted to get another.  They did not want to sedate her.  When she had the one earlier in the week, she was so lethargic from being so sick that they didn't have to worry about sedation.  Not the case today.  She is allergic to Versed, which is often used as a light sedation.  That really stinks in cases like this.  So they decided to go with another dose of Benadryl.  She's getting it anyway because she gets Red Man's Syndrome with one of her antibiotics - Vancomycin.  They gave it to her through her IV and that seemed to help.  She was a bit fidgety when they were getting her situated on the table, but they basically put he in a cocoon thing, strapped her in and then used tape across her forehead and chin so that her head would be stable.  They also put cloths around her head to keep it in position.  We all stepped out of the room and the CT was a success.  As for results, I have not heard.

The GI doctor was by a little later on.  I don't know that I mentioned this, but when we got to the room in the PICU stepdown unit, we noticed her j-tube was leaking out bright red blood.  To back up she has a g-j tube.  The g- portion is the gastric tube - all meds go into that which goes into her stomach.  The j- portion bypasses the stomach and goes into the jejunum.  The nurse was told by the resident to let it drain by gravity, so they wrapped it in a preemie diaper and let it drain.  There was a pretty decent amount that drained out.  Obviously this is not normal, so it has to be investigated.  Feeds were stopped as soon as this was noticed.  Anyway, the GI doctor said that in order to determine what is going on, they will need to do a scope.  That is going to be done around 10am tomorrow (Sunday).  There are a number of possibilities, so I'll try not to worry about it until we know for sure.  She will have to be given a light sedation for this procedure.  The doctor from the PICU who saw her came by tonight and spoke briefly about it.

Peyton's pulmonary doctor was by just before we came over to this new room.  He wanted Peyton to be on continuous bi-pap, regardless of whether she was asleep or not.  This is to help keep her airway open in the event she stops breathing again.  It can be torture to get her mask on her when she's awake so she has it on when she's asleep, so the concept of keeping it on her while she is awake seemed a bit daunting.  She's been a bit fussy with it - moving her head around a lot - but she's doing far better than I imagined she would.

Will update more tomorrow.