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.

Reflux

Yesterday we received some results from the endoscopy that Peyton had last week.  The nurse practitioner from the Gastroenterologist (GI doc from now on!!) called me with some information.  Whatever samples they took during the procedure indicated that she is definitely having reflux issues again.  She's been on Prevacid since about November, but the dose was doubled a few weeks ago.  She's also been on Zantac for a month or two.  Even still, she's showing that reflux is a problem.  So, to try to help the situation, the doctor has changed her from 15 mg of Prevacid twice a day to 20 mg of Nexium once a day.  We'll also take her off the Zantac in a couple weeks.  It takes a couple weeks for the Nexium to kick in, so the Zantac will cover her during the transition.

The results of bloodwork done showed that her hemoglobin and hematocrit levels are low, but they are at least consistent with where they've been over the past few months.  Thankfully not so low as to require a transfusion.  I guess it was getting pretty close a couple months ago.  Thank you God for sparing her from that!  She's not had one yet and hopefully doesn't ever!

In addition, her iron is low.  Normal is between 50-170.  Hers was 14.  She's now taking iron to help that.

As I mentioned in the last post, the endoscopy showed that her Nissen Fundoplication surgery that was done in September 2009 has come undone.  I'm not sure if it's all the way undone or just very relaxed so as to be completely non-functioning.  I don't suppose it matters much since it's not functioning either way!  This surgery was to prevent reflux and the vomiting that was so horrible at that time.  She's also aspirating (secretions going into her lungs and not down her esophagus).  Presumably, if she's refluxing, then what goes up has the potential to also go down the wrong way.  This could be dangerous for her.  I emailed the physician's assistant in the surgeon's office last week regarding this because I wanted to know what they would want to do for Peyton.  On the one hand, I don't want to put her through another Nissen surgery - it's about 4 hours and is an open surgery.  The scar on her belly (running up and down, not across) from the surgery is at least 6 inches long.  It's a big deal to put her through this.  On the other hand, I don't want her refluxing and potentially aspirating and winding up with aspiration pneumonia, which is something that could take a bad turn.

I finally heard back from the NP in the surgeon's office today.  She sent my email to the surgeon.  His opinion is that in Peyton's case, re-doing her Nissen is absolutely warranted.  That said, he does not want to do it because of her overall condition.  No surgery.  Now, the fact is that she isn't having the trach surgery that was recommended by the ENT because that is OUR choice.  WE made that decision in Peyton's best interests.  However, this is the first time a doctor has stated to us that he didn't believe a recommended treatment was in Peyton's best interest.  That's a tough one to swallow.  At the same time, though, I trust his judgment and feel comfortable that he is doing what is best for Peyton.

I haven't gotten word on any results from the bronchoscopy - the doctor took cultures to see if whatever bacteria is plaguing Peyton can be identified in order to be treated properly.  I can't even begin to tell you how many antibiotics Peyton has been on - regular antibiotics, really heavy duty "oral" antibiotics (though those go through her g-j tube), regular IV antibiotics, stronger IV antibiotics.  She's been on nearly everything at this point!

Right now I am really believing God for an end to the respiratory issues that have been plaguing Peyton for over a year now, as well as the more recent gastrointestinal issues.  I know He can heal her.

Endoscopy - Bronchoscopy

Peyton is back home from her endoscopy and bronchoscopy!

We arrived at MUSC for 7:00 this morning.  We got her checked in and into the holding area before going back for the procedures.  Both the pulmonary doctor and gastroenterologist came to speak to me before the procedures just to explain what they'd be doing and what they would be looking for.  I was able to go back into the procedure area with Peyton while the anesthesiologist got Peyton settled in with a nice dose of propofol.  She was asleep very quickly and then I headed back out to the waiting room.

The procedures didn't take too long.  The pulmonologist came out first to sit down and discuss her findings with me.  Mid-way through, Ron showed up - he had to bring Moira to school, so came back when that was done.  Essentially, what she found was that Peyton has the same white, frothy secretions we find in her mouth and back of her throat all the way down her airway and into her lungs.  She said there were yellowish secretions towards the bottom on the right side.  So, it's evident that she is still aspirating, which is not good.  She suctioned out as much as she could.  The difficult thing is that it just comes back - you can suction all you want, but it comes back.  She was able to take some cultures so she could have them tested for various strains of bacteria.  Up until now, we've had the regular nasal cultures done in the hospital and any antibiotics she's been on have either failed or took forever to even work, indicating whatever she's got is just outside the realm of the drugs' capability.  We're trying to troubleshoot and it's like taking a shot in the dark.  Hopefully the cultures taken today will provide a much better clue as to what she's got going on so that the doctors can know best how to treat the illness.

From a pulmonary point of view, it's not good to be aspirating.  It could cause aspiration pneumonia, which has the potential to be devastating.  So, what can they do??  Nothing.  Without going to the extreme surgical measures I discussed a couple months back, there's really nothing we can do except try to get on top of these illnesses when they happen to try to suppress them before they become too much to handle.  If you are new to Peyton's story and haven't read back far enough yet, the surgical options would be either doing a trach, which would allow us to suction her further down; or to do a layringotracheal separation - the airway and esophagus are physically separated and the airway is cut off from the upper throat so ALL breathing is through a trach and there would be NO sounds whatsoever coming out of Peyton's mouth again.  Even with just a trach alone she could still aspirate.  Anyway, it's difficult knowing that there are possible ways to help (and even those ways are definite!) and that you choose not to go those routes, even when you are making those choices based on what is in her best interest.

Then there was the endoscopy.  This was because of the gastric bleeding she's been having.  They needed to locate the source of the bleeding.  Let me just say that my prayers were for the problem to be found so that it wouldn't be a mystery - either make it obvious and make it be something which is easily repaired OR just let it be nothing....let there be NO sign of anything being on.  I have to say we were blessed today.  I saw pictures the doctor took.  He found NOTHING.  No active bleed.  No old blood.  Not anything bloody.  NOTHING!!!!!  

Between the two procedures, the only troubling bit was this.  Recall that back in August of 2009, Peyton had a nissen fundoplication surgery.  This was done at a time when she was violently throwing up all the time.  One of the risks of this procedure, an open surgery that left a several inch scar down her belly, is that it can come undone.  Well, her nissen is no longer in tact.  It is undone.  So the question remains, what is to be done about that.  She is throwing up, but not to the extent she was throwing up before.  However, she IS aspirating.  So, if we're faced with the possibility of this surgery it's a real tough call.  I know when we saw the surgeon for a check up a few weeks back, he is currently inclined to be as minimally invasive as possible now considering how her overall health has generally declined.  It is SO hard to know what to do.

So, it was a good news bad news kind of day.  But we are so blessed that the endoscopy revealed NO bleeding.  That is a huge relief.  The pulmonologist took cultures and we'll hear more about the results in the coming days or week or so.  The gastroenterologist took tissue samples, so it'll be a while before we hear anything back on that.

Aside from all of this, Peyton's temperature is back to normal.  She's still pretty junky sounding, but is feeling much better than she was the past couple days.  

Thank you so much for all your prayers and support!! 

Gastro Drama

It was another very early morning for me - up since 3:00am for the second day in a row.  This time it was because Peyton had slept the entire day (Monday) and decided to go insane at about 3:00am Tuesday morning.  First off, she woke up really fussing, which worried me.  She was drenched in sweat but she was hot.  I thought initially the fever had broken, but instead, her temp was 102.7!!  I gave her some Tylenol.  Shortly thereafter, the fever must have broken because she went from fussy child to crazy active child, rolling all over her crib flipping herself from one end to the other.  That was it, we were up for the day.

It was a crazy day of phone calls and chatting online about her status - enough that it make me forget to pick Moira up at school!!  Ok, so I knew I had to - it just didn't occur to me to check the time while I was busy!  I happened to glance at the clock on my computer and it was 9 minutes past dismissal time.  Good thing we live close!  I was out the door so fast, I nearly ran over the 2 home nurses who were just coming in to draw labs from Peyton!  That would be me personally, not me with the car!!  So, I made it to the school and sped through the pick up line - not a single car was ahead of me.  Imagine that!  Actually, if I leave right AT dismissal time from home, I can make it and be within the last 10 or so cars to go through, which is ok.  I guess those few minutes make all the difference.  Frankly, I was stunned the line moved that fast!  At least there were still cars within a few feet of the school property, so it's not I abandoned her.  Poor kid!!

So what made my day so crazy??  Phone calls.  Non-stop phone calls!

First off, the endoscopy coordinator who I spoke with yesterday called me early this morning to check on Peyton's status - when was her last fever, what was it, what was her temp now, how is she doing, etc.  We discussed the issues of anesthesia being the potential snag in the plan to get the bronchoscopy and endoscopy done this week.   Given that she did have a 102+ fever overnight, it was really cutting it close.  She said sometimes they like to wait 2 weeks after a fever, but with Peyton's general health, if you wait for the "right" time, you'll never find it - and if you schedule something for when you *think* the right time will be, surely you'll wind up rescheduling, just as I have done with her sleep study, which is in it's 3rd or 4th rescheduling, currently set for 1/30/11.  I explained how Peyton wound up hospitalized due to illness days prior to her salivary gland surgery and that they kept it on the schedule in the hopes she'd be well enough.  She had a fever then and the surgery was fairly close to 24 hours after the fever broke, if that.  She took that into consideration so she could let the anesthesia team know, as there would be reports in the system on how well she did under those conditions.

Later in the day, I received a call from the pulmonary clinic.  It was the nurse practitioner who I'm always talking with.  She wanted to give me a heads up as to what was going on because apparently this whole endoscopy/bronchoscopy thing has caused quite the drama between pulmonary and gastroenterology.  I just field calls and do what they tell me - no drama here.  Not there, apparently.  I'll spare you all the details, as I could go on for about an hour about that.  Suffice it to say, a note is in the system from anesthesia from today stating that they are ok with proceeding with the procedure tomorrow (Wednesday).  The GI doctor wanted labs drawn, so that was the reason for the home nurses coming as I was heading out the door.  There was more drama around that between that agency and the hospital (because of failure to communicate WHEN the procedure would be), but long story short, they were drawing labs this afternoon.

So, the bronchoscopy and endoscopy have been coordinated between the pulmonary doctor and the GI doctor.  Peyton and I have to be there at 7:00 in the morning and she is the first one on the schedule.  Aside from looking for a potential cause for the gastric bleeding, they'll be able to get down in her lungs, get samples and maybe try to figure out what's keeping Peyton so sick this past year.  As much as I don't want them to find anything wrong at all, I would love to get some answers so we can work on a solution, assuming there is one. 

Please send up some prayers for Peyton for this procedure to go well and for us to hopefully find some answers. Thanks!  Will update tomorrow.