Tuesday, April 19, 2011


I mentioned yesterday that Peyton was to have her Cardiology appointment today.  She did, so here's a quick update on that.

Peyton had a 12:00 appointment with Cardiology.  When we arrived, the nurse said Peyton would be having an EKG and cardiac ultrasound and then we'd be seeing the doctor.  The EKG was fairly quick.  The ultrasound was 30+ minutes.  The room where the ultrasound was was like an oven.  I thought we would perish before we were through!  After that, it was back to the waiting room.

I'm not sure what happened while we were out doing the tests, but the population in the waiting area exploded and it was hard to find a seat!  We were sitting down a little before 1:00.  We were taken back and were seeing the doctor sometime just before 3:00.  UGH!  Once we were back there, things moved along quickly.

The resident came in first and then the attending.  Both assured us that Peyton's heart is not an area that we need to have immediate concern over.  She does have a murmur and a mitral valve prolapse as discovered before.  However, they are not to the extent of needing medication or other intervention.  Peyton's severe sleep apnea and having had over a year of continuous respiratory issues hasn't helped her, but she's not in any distress or having any acute problems.  For now, the Cardiologist would like to monitor her heart - see her back in a year.  He's not keen on the idea of putting her on any meds at this point in time.  She doesn't need them at this stage and she's already got so much other stuff going on that adding another med might cause more trouble than it is intended to solve!

So, it was a good appointment.  I like when that happens.  Praise God for a mostly-healthy heart!! 

Monday, April 18, 2011

New Tube

This is officially my last post having to do with "that clogged g-j tube"!!  Why??  Because "that" g-j tube is a thing of the past!  So here's what's happened in the last 28 hours....

At about 7:00pm Sunday, Peyton's nurse, who was in the last hour of her 12 hour shift, was administering Peyton's meds through the 'g' portion of the g-j tube as usual.  She got through a couple, and then something went wrong....again.  She felt something leaking and upon examination she noticed the problem.  I'll get back to that, but click on the link below so you can actually see what a g-j tube looks like:

The very upper left portion is the "port" end.  There are 3 ports: balloon, jejeunal, and gastric.  The tube is held in place with a balloon (I'll get to that).  The balloon is inflated using about 4.5 cc's of water.  The syringe attaches to the balloon port to either inject or withdraw the water depending on whether the tube is being placed or removed.  The middle port is the jejeunal port.  The feeding pump bag line is connected to this port and all her feeds travel down a thin tube within the larger tube to the jejeunum, which is beyond the stomach.  The third port is the gastric port.  You connect syringes to this port to deliver her meds through a separate tube within the larger tube where they travel and empty out into the stomach. 

Follow the tubing from the port end on down.  In real life, the distance from the port to that round flange you see is about 6".  The flange rests on the outside of Peyton.  It holds the tube in place from the outside, while the tube continues on into her stomach through the hole in her tummy.  Beyond the flange you will see black markings.  These measure the length of the tubing, so that flange piece actually tightens up along that part of the tubing.  

Beyond the black markings, traveling to the right in this picture, you will see a clear bubble looking thing.  This is the balloon I was referring to.  This picture shows it inflated.  This rests up against the inside wall of the stomach while the flange rests just opposite on the outside of the body.  So, in reality, that flange piece is MUCH MUCH closer to the balloon - probably less than an inch separates the two.

Everything you see from the balloon to the far right of the tube is inside Peyton's stomach and beyond.  The part of the tubing that is black looking is the part that has to be guided under fluoroscopy by interventional radiology as it is the part that is placed in the jejeunum, which is basically the upper intestines - bypassing the stomach.  The meds that are administered through the "gastric" port have an opening along the tubing just beyond the balloon so they can empty out into the stomach.  The feeds, however, go through the jejeunal port and continue along the full length of this tubing, emptying out at the end into the jejeunum, bypassing her stomach.  It helps significantly with her reflux and, in doing so, minimizes her risk of aspiration, or having what is refluxed wind up spilling over into the lungs, which can cause aspiration pneumonia.

So, that's the anatomy of the g-j tube.  I'm sure many of you may have been wondering what a g-j tube is, so there's your lesson!

Now back to what happened.  The nurse found the tube to be leaking.  That happened was she found a tear in the tube, just below where the ports are.  It was an "up and down" tear, as opposed to a "straight across" tear.  It was about a centimeter or so long.  The gastric tube within had ruptured and tore the outer tubing open.  This is directly as a result of the ER nurse's improper technique used to unclog her tube back on April 9th.  
It appeared that the jejeunal portion of the tubing was still working, so the feeds could theoretically continue, but we stopped everything and went to the ER....again.

When we got to the ER and were in the triage room, I told that nurse exactly what happened that brought us there, including the fact that I'd filed a complaint and how the physician's assistant in surgery wanted herself and the surgeon paged if we wound up back in the ER.  We waited a short time in the waiting room before being called back.

We didn't wait too long before we were back in a room, and it wasn't long after that when a resident was in - not a nurse - a resident.  Usually it's a nurse you'll see first.  She got all the details on what happened that night as well as what led to the rupture.  She explained what she would do to get things moving and away she went.  Not long afterwards, a surgical resident was down and he explained who his supervisor was and who the attending surgeon was and how they were all going to work on a solution and get us moving.  I was thinking, WOW, this surely has to relate to the fact that we were there as a result of a hospital staff member's incompetence.  We were getting VERY GOOD service.  That surgical resident left and eventually came back with his supervisor.  He came in a few times during our time in the ER.  The first ER resident was in a couple times as well.

Long story short, as we learned the time Peyton pulled her g-j tube out, interventional radiology is not in on the weekends.  Given it was now about 10pm Sunday night, they were trying to figure out how best to proceed.  Peyton had missed meds, was going to miss more that night, and was going to miss some in the morning, including seizure meds.  They decided amongst themselves pretty quickly that the tube had to be exchanged for a new one.  That was a given.  You can't fix the tube any other way.  However, trying to get someone from IR in on the weekend is very difficult and it was already so late on Sunday.  They decided that the best plan would be to actually admit Peyton so she would already be here and they could try to get her in to IR to have the tube exchanged as quickly as possible.  Also, I'm sure they're thinking she's missing meds and we need to figure out a way to get them to her or at least observe her since she could be without!  

Shortly after 10pm, the decision was officially made to go ahead and admit Peyton.  The home nurse had to leave at that point.  I stayed on with Peyton.  We had no plans to be admitted, I wasn't particularly prepared.  I figured we wouldn't be there long, so it wasn't the end of the world.

Being admitted winds up slowing a lot of things down - like getting meds.  At about 2:00 this morning (Monday), the nurse was in and was putting an NG tube down Peyton's nose - it goes down to the stomach, so her meds were to be given that way since we couldn't use the g-j tube for meds.  Peyton was NOT happy.  It was about this time her feeds resumed.  Those were resumed using the g-j tube as it was determined that it was safe to utilize the "j" portion of the g-j tube.

Meds got kind of back on track until this morning.  We knew she'd be having the tube replaced, so the big question became do we want to have to put the NG tube down at least 2-3 times based on the dosing schedule just to administer these meds, or do we wait til the new g-j tube is in so that it can be used for meds, and then just try to catch up again afterwards.  We decided on the latter, so her med schedule is off a bit now, but we're working on getting it back to where it was before.

The tube was replaced late Monday morning, but the whole discharge process took ages.  We didn't get home til about 3:30pm!!  A little crazy considering we knew from the get go that we were there to have the tube changed and be done with it.  We did have a question for the pediatrician there about a bump and redness on Peyton's head.  Well, turns out it isn't typical ringworm and isn't a typical fungal infection.  So, once again, Peyton has a little bit of a mystery going on. Since it is sort of cradle-cappish, they actually recommended using Selsun Blue shampoo on her to see if it helps.  Whatever meds they would prescribe for a fungal infection have so many interactions with the many meds she's on that it really wouldn't be worth putting her on it, especially when they weren't 100% sure of what they were dealing with.

Another perk of the visit was that a pharmacist actually came up and stood in the room while the doctor rounded with the team.  She stayed back and spoke with me afterwards.  She's the one who has been in much contact with the pulmonary team about all of Peyton's meds for her respiratory illness as well as the thrush that we've been treating for 10 weeks now that isn't clearing up fully.  She's actually going to speak with various doctors (pulmonary, GI and infectious disease) about everything that's going on, including all the g-j tube troubles and see if we can get her on some different meds which might be less troublesome for her and us.  She's going to be on antibiotics for the respiratory issues for months - we can't be winding up in the ER every few weeks with all these troubles!

So, at the end of the day, Peyton has a new g-j tube and is doing well.  People are actively speaking to other people on Peyton's regular team to see what can be done about improving our situation.  

A stressful day or so to be sure, but all's well.  The formerly clogged and potentially-turned-actually damaged tube is now gone.  She still has the tube, but it's brand spankin' new...and if it gives us any trouble, I'm gonna give IT some trouble!!! 

Peyton sees the cardiologist tomorrow....will update more on that tomorrow. 

Tuesday, April 12, 2011


Peyton is doing well after the events of 4/8/11 which I wrote about on 4/9/11.  We have periodic concerns about the tube and whether or not something happened to it internally, but she is acting fine.  I never did hear back from the hospital regarding my complaint.  I will be contacting them to see if they're even doing anything about it.  I did hear back from the PA in surgery and she spoke to the surgeon.  His response was that if we wind up back in the ER with tube issues, tell the nurses to page both of them.

Peyton saw her Neurologist today.  It was a lengthy visit where the doctor spoke a whole lot about a lot of stuff.  We didn't really come out of there having learned anything new, but it was a good opportunity for him to assess her current situation.  He's very pleased that she's been out of the hospital for as long as she has been (since mid-November!!).  He's always thinking, so he will continue to think and see if he can come up with some ideas on how to proceed.  The problem is that there are so many issues with her, it's hard to say where some things are stemming from.  Is her physical regression a result of decline in overall health?  A result of her neurological impairments?  Are those impairments worsening?  Is there another underlying problem?  He'll see her back in six months.

I spoke with the nurse practitioner in the Pulmonary clinic today.  Peyton's had thrush in her mouth for 8+ weeks now.   She's had two courses of oral Nystatin.  That was followed by a course of Diflucan.  None of these worked, so the NP spoke with the doctor, who wound up contacting a doctor in Infectious Disease.  Remember, Peyton has been on so many antibiotics for over a year now, but has been on continuous antibiotics since February 2nd for the mycobacterium which was found in her lungs.  She will continue on those antibiotics for some time.  As a result of all the antibiotics, she's had thrush now for well over 8 weeks and it's not responding to meds.  The ID doctor recommended another round of Diflucan, but a stronger form.  Finally her tongue started to look much better.  Not normal, but much better - if you'd have seen it at its worst, you'd be amazed at how it looks now.  As that course of antibiotics was winding up last week, I contacted the Pulmonary nurse practitioner to find out what we should do since it wasn't completely gone.  Another round of the higher strength Diflucan was prescribed.  We're now a few days into another 2 week course of antibiotics.  We'll see what happens.

When the nurse spoke with the doctor in ID, he suggested that perhaps we bring Peyton in to see him in the Infectious Diseases clinic.  This makes sense - she's had this mycobacterium for so long, plus this seemingly incurable thrush, plus the fact that they actually found some yeast (aka thrush) in her lungs when she had that bronchoscopy a few months back.  We see this doctor in mid-May.  I think we actually saw him once when she was in the hospital, so he's not completely unfamiliar to us.  Although, I'm sure he was in complete "precautions" get up (gown, mask, gloves) when Peyton was in the hospital, so I couldn't tell you what he looks like!

That's about all that's new tonight.  Praying that Peyton's tube issues have resolved.  Praying for the thrush to finally go away.  Praying that someone, someday may have some answers regarding all of Peyton's issues.

Saturday, April 9, 2011

Worst ER Experience...Ever

I think I'm experiencing deja vu.  I last updated on 3/20/11 after a trip to the ER on 3/19 where we had a horrible nurse who was all kinds of stupid wrapped into one package....

So, yesterday, 4/08/11, I had to take Peyton to the ER.  The nurse who took care of her was a horrible nurse who was all kinds of stupid wrapped into one package....

I'm really not trying to sound mean.  This is as complimentary as it gets.  Trust me, I AM being nice.

On Thursday night, before Peyton's nurse left, she mentioned that the 'g' portion of Peyton's g-j tube was running slowly.  It is the g portion where all of Peyton's meds go, so it's accessed only when she needs meds and if we decide to do a small water flush of the g-tube throughout the day.  Otherwise, everything else - pediasure and waterr - goes through the 'j' portion of the tube.  She mentioned this so I could watch out in the morning as there could be the potential for it to wind up being clogged.  There's one particular antibiotic which she has claimed a few times to be problematic in the tube.  I, personally, have not had these problems.  Anyway, it was slow, so I was to watch it.

Friday morning, another of Peyton's nurses arrived at 7:30am for her shift.  First thing she does is to administer the first round of meds.  The g-tube was completely clogged.  There was no budging - you couldn't draw fluid out or push any in with a syringe.  While a common practice is to try to get some cola in the tube to help break down the clog, that becomes impossible when you can't even move anything in the tube.  I wound up calling the Physician's Assistant (PA) in the surgery clinic.  They are the ones we deal with when we have issues with the tube.  I wasn't sure if we could come into the clinic or if we just needed to go to the ER.  They don't have clinic every day, so I felt like we'd probably wind up going to the ER, which is what the PA did suggest.  She told me to let them know that I'd already spoken with her and they could contact her.

So, we loaded up Peyton and her gear and headed to the Children's ER at MUSC.  Not at all what I'd planned for my dad, as I was really feeling quite strongly about catching up on some sleep that day.  That didn't happen.  I knew from past experience that all they needed to do was to verify that the line wouldn't flush or draw back and that they would get that "clog zapper" stuff and go about releasing the clog using that, and an hour or so later we'd be on our way (after whatever wait time we'd have on the front end of the visit). 

The ER was not busy at all on Friday.  There were two nurses at the front desk.  One recognized me from prior visits.  I gave the current issue and history to the other.  They called the back and within a short amount of time, a nurse appeared in the waiting room to take us back.  As soon as I saw her, I shuddered.  It was the same nurse we'd had such a horrible experience with last time.  UGH!!!  So she already knows who is coming back to the ER with her and what the issue is, but she sees us and starts going on about that last visit in the waiting room to the two nurses at the desk!  She starts going on and on about how long we had to wait last time just to get some coke to put in her tube to unclog it.  She's really being dramatic about this and I'm thinking, what are you talking about lady???  The last time we were here, she pulled her tube OUT!!  Then I'm thinking, I sure am glad there's no one else in this waiting room as you're probably breaking every privacy regulation known to the medical profession right about now!  I didn't appreciate her rant, even if it was to other medical professionals.

We followed her back to where the ER rooms are.  The triage and waiting area is separate from the area where the rooms are.  You actually have to leave the waiting area and take a few common area corridors to get to the door that leads to the rooms.  The ENTIRE time we're walking, she's discussing Peyton's last visit and why we're here now...all while we're passing random strangers in the hall!!  Again, HIPAA anyone???  Surely this is an absolute violation of our privacy.  Forget the fact that she didn't even have her facts straight - she's just violating our privacy!

One of this nurse's biggest issues is that she speaks over you constantly and doesn't even LISTEN to you.  I explained the past history using the clog zapper and that I'd spoken with the PA in surgery and she knew we were coming to the ER to have the clog resolved.  She kept referring to the PA as "Judy" instead of "Julie" no matter how many times I corrected her.  She asked if we'd like a dvd or anything for Peyton.  I said no thank you, that wasn't necessary.  She left the room presumably to begin the process of getting Peyton taken care of.  Instead, she returns with a couple dvds a short time later and begins trying to figure out how to work the dvd player in the room.  Huh????  I just said I didn't want anything!  I want Peyton taken care of, and now you've just wasted 10 or 15 minutes of time that could have been spent working on her.  That puts us 10-15 minutes even later on the ability to give Peyton her meds once the issue is resolved.

At some point she said she'd go get a syringe so she could "go through the motions" (her words, not mine) of trying to flush the line before trying this clog zapper stuff.  She got a syringe, filled with some water, and began to try to flush the tube.  As expected, it didn't budge - couldn't flush and couldn't draw back.  Now, I fully expected this would be part of the process and don't have a problem with her having gone this far.  However, it was at this point that she started to try to continuously push in and pull out the plunger on the syringe in an effort to push out the clog.  This was requiring some effort on her part because it was 100% completely clogged.  This is where I started to get anxious.  This is NOT how this issue should be resolved.

A resident came in and he began speaking to me about Peyton's history and current situation.  At the same time, the nurse is STILL working with the syringe trying to force the clog out.  The clog was way down the tube right at the point where the tube enters the skin (there's about 6" of tubing hanging out of her).  Anyway, I'm agitated because I can't concentrate on the resident when the nurse is doing something she shouldn't have been doing, but I'm also too dumbfounded to speak up.

The resident wound up taking a seat across from the stretcher.  The nurse and I were on the opposite side of the stretcher facing him.  She keeps on keeping on, and I'm talking to him when all of a sudden, he gets thoroughly doused with water.  You see, when there's pressure build up, the syringe, which is inserted into the port, will actually be forced out and if you're pushing in on the plunger, you're actually just going to squirt the contents of the syringe straight out with the brute strength force you've been using to try to free the clog.  This has happened to me personally, although not with a clog.  It can just happen.  Anyway, the resident wasn't impressed, nor was I.  You'd think this is where the nurse would give up, right??


It's at this point she decided that the clog was moving and that she could actually fix it.  Did I mention that prior to the above incident, as I was watching her work on Peyton's tube, I could actually see a pretty good sized air bubble forming on the tube??  That means that this normally tube shaped line had a round bubble forming at one end of it caused by the enormous pressure build up from what she was doing.

Ok, so you may have been wondering why it is that this is not the method one should use to free a clog?  You might be thinking, well, if that's all it took, why didn't I just do this at home?  What's the big deal with what she was doing - she is just trying to help, right??


What she was doing was wrong on so many levels.  What she was doing could actually cause the tube itself to rupture.  Peyton has a g-j tube, which means that a portion of the tube empties into her stomach, while a longer portion continues on past the stomach into the upper intestines.  The process of inserting the tube is done in radiology as it has to be guided by x-ray by an actual doctor.  If this has to be done, they have to get surgery involved as they're the ones who have to assess the situation and make the call as to whether or not a new tube is needed or to at least get radiology to see if one is needed or not.  It becomes a more time-consuming and costly incident.  It's not like her old g-tube, where if she pulled it out I could just replace it at home myself without even having to call the doctor. 

So, yes, the nurse did wind up freeing the clog.  Peyton's home nurse and I were dumbfounded and shocked.  Obviously there was little else to be done, so the resident pretty much wrapped it up.  The nurse left the room at one point and I briefly attempted to convey my anxiety about what occurred, but I just couldn't.  It didn't seem to bother him at all, but I wouldn't expect him to understand what my problem was, being a resident.  No offense to residents.  It is true that a lot of residents in the ER setting have no clue about tubes in general, much less the process by which a clog needs to be resolved.  The attending came in before we left, pretty much just to say hi since the situation was resolved.  Again, I was too shocked to speak up and we signed the discharge forms and were on our way.

So we left the hospital in shock.  The nurse and I were both completely unimpressed with everything that had just happened.  Yes, the clog was resolved, but at what expense??  It caused me great anxiety, and I went home very anxious because I CAN'T SEE INSIDE PEYTON!!  How was I to know she hadn't damaged the tube in the process.  So here I sit on late Saturday night, a day and a half later STILL anxious.  All I knew at the time we left was that when I got the follow up call from the ER the next day, I was going to rat out this nurse (the hospital always makes follow up calls within a day of discharge to see how the patient is).  Wouldn't you know, I still haven't gotten a call??

I waited out Friday just in case the hospital happened to call late the same day rather than the following day.  After some time had passed, I knew what I needed to do was not to just voice my concerns to whoever called to follow up, but to actually file an official complaint with the hospital.  I got the number from a friend of mine who works at the hospital, and I was going to use it...but I wanted to wait a little on Friday to see if maybe I'd get that follow up call.  I didn't.  Life happened that day as well, so I didn't get to making my call.  So, last evening I got on MUSC's website and found that they actually had an online form for filing a complaint.  Goody!!!

I know you may find this hard to believe, but I wrote a rather lengthy complaint, listing the actual name of the nurse involved.  I explained that we're no stranger to MUSC, hospitalizations, tube problems, etc.  I explained that I respect protocol and she had to at least try to flush - but that when it didn't right away, that she should have moved on to the next step - get the clog zapper.  I explained how dangerous what she did was.  I complained about the HIPAA violations from her initial appearance in the waiting room.  I also complained about the fact that I'd contacted Peds Surgery before coming to the ER and that the nurse claimed she would call them while we were there, but that I highly suspected she did not.

I then followed up with an email to the PA in Peds Surgery to let her know (briefly this time!) what had happened and that I had actually filed a complaint against the nurse.  I wanted the PA to know exactly how Peyton was treated and that I had some concerns. The tube actually wasn't sounding or feeling right last night, so I'm still a little leery about it.  For the most part, it's been ok, but after our experience, I'm not 100% comfortable just yet.  I emailed the PA because I wanted her to know how tube patients are being treated by this particular nurse in the ER.  I told her my suspicion that the nurse hadn't contacted the PA.  I also wanted her to know I filed a complaint in the event that the hospital's follow up to my complaint somehow wound up involving Peds Surgery (I'm thinking it's possible since they might actually want to verify that what I was saying about how it SHOULD have been done was the truth).  I actually just heard back from the PA this evening (yay for having someone who was concerned enough to respond on a Saturday night!!).  She said no one from the ER contacted her.  Nice.  She had a few things to say and then said she'd be in touch with me Monday to see how things went over the rest of the weekend.

I've had a very frustrating week and this ER visit was just the icing on the cake.  I am trying my best to remain positive and to not lose sight of God in everything.  I am trying to see the good in things.  I am trying, but this week, I am failing miserably.  It's just been "one of those weeks" and I'm spent.  Hoping for an awesome church message in the morning.  I need it.

For now, Peyton is ok.  Her tube is ok...I think.  We'll see what next week brings.  Please say some prayers about this complaint process.  I just want to ensure the same thing doesn't happen to someone else.  I also want to ensure that it is within my rights as a patient's representative to request that that nurse never lays her hands on my child again.  I'll let you know what happens!!