Bones

If I could narrow down the list of things that are very difficult on this journey, I would have to say that the worst feeling in the world {as a parent} is watching your child suffer - whether through illness or pain.  Nothing compares to the horrible feeling of watching your child suffer, screaming in pain and watching her in agony while being completely and totally incapable of verbalizing through words.  Nothing.  I honestly am not sure who has cried more - me or her.

right leg - note swelling and bruising of knee and leg

We came in to the hospital through the ER on Sunday, unsure of the cause of the swelling in her right leg and left arm.  Fortunately, one of the residents that night have the presence of mind to order an x-ray on her leg, as that revealed the startling news I shared yesterday - that Peyton had a seriously fractured tibia.  They ultimately ordered a skeletal survey rather than just an xray of her arm.  Her foot xray revealed what could be a metatarsal fracture.  However, it wasn't clear - it could actually just be some sort of defect or deformity.  Whatever the case, it is there.

The skeletal survey was done yesterday afternoon.  It is essentially a series of xrays examining every segment of the body from head to toe.  If the fractured tibia wasn't startling enough, this survey also revealed a fracture of her left distal radius.  Left wrist.  Ok, I know she was experiencing pain of her right leg, which I thought was coming from the chronic hip pain.  While that may be part of it, it was certainly because of the tibia fracture.  But I can tell you for certain that I do not recall her ever {how many ways can I stress "never ever ever" without sounding like a Taylor Swift song??} having any pain in her arm or wrist.  Ever.

The Orthopedist came to see Peyton right before her skeletal survey.  Very shortly after she was back in her room, another was back in the room with someone whose title I forget but I'll call him the "master plasterer". He's the splinting and casting guy.  Peyton's left arm and right leg have been splinted now.  They will stay this way for three weeks.  We can't get them wet.  She can't be bathed.  Only if we see her fingers or toes turning color can we rip everything off for circulation and rewrap.  I don't think I'd like to be going there!  Basically, there is cotton wrapped around, followed by a piece of something dipped in plaster which is affixed to the appropriate spots {bottom of foot up to back of leg just above knee, and back of arm to the fingers} to stabilize everything.  Then it's all wrapped in cotton again and then the outer wrapping.  In a few weeks, we will see Ortho again and they will assess, but probably will cast her leg and arm at that time.  If that's the case, I'll have to figure out how we can do a virtual cast signing for her!

Seriously...how comfortable does that look??  {insert sarcasm here}  Poor baby.  I feel horrible for her.

The Orthopedist came back to see us after this was done.  In a nutshell, her bones are really bad.  She hasn't been tested for bone density yet, but her bones {via xray} look really bad.  Really thin.  The doctor assured me that what happened is not unusual.  She's got multiple special needs.  She's on seizure meds.  She's tube fed.  She has this severe copper deficiency.  She doesn't stand or walk or do things that would promote bone development.  She has many many strikes against her when it comes to bone development.  This is not unusual or even unexpected.  In addition to these fractures, she also has two vertebral compression fractures at T2 and L7.  He said that we needn't feel guilty about any of this.  It just happened.  He said therapy could have done it.  Putting her pants or shirt on or taking them off could have done it.  Whacking her hand on her crib rail could have done it.  However and whenever it happened, it didn't take much effort.  That said, he indicated that this would not be the last time this happens.  And when it does, he said please don't feel guilty - it's not our fault.

All medical evidence seems to be indicating that it's related to her lack of bone development.  However, she came in as a child with multiple unexplained fractures.  If all of the above hasn't caused enough stress.  Yeah.  I'm not going there right now.

On top of all of this, her g tube clogged last night.  She has s g-j tube mickey button.  It's all in one.  The feeds go into the j port and they go into her intestines.  Meds go into the g port on the side and those go into her stomach.  The g is clogged, so she couldn't get her meds.  The doctors gave clearance for them to give them through the j port, but meds don't absorb as well when not in the stomach, so pain is a bigger issue this morning.  It's not fixed yet.  They are getting with Interventional Radiology.  I hope it doesn't have to be changed out.  She just had it changed it on Friday!  They are supposed to be good for 10-12 weeks.  Clearly we're not that far out yet!

Waiting on that to happen today.  Endocrinology is supposed to come see her as well regarding the bone issue.  They'll likely do a bone density test.

I will report back later, but in the meantime, would appreciate your prayers for Peyton's pain.  I am curious/concerned about how well her healing will go since nothing else seems to be done normally.  I am also worried about future injuries and missing them or just the pain that they will put her in.  This is obviously a very new and challenging situation we are being thrust into.  Pray for all of us!

Thanks!!

Home Again

Peyton was able to come home from the hospital yesterday {Friday}.  There wasn't really a whole lot more that could be done at that point other than to make sure that she got her g-j tube changed out.  This is something that has to be done every 10 weeks.  She was due to have it changed next week, but we were able to have this done before leaving the hospital.  It was just easier to do it while we were already there.  She was discharged from the unit and then we went to radiology to have her tube changed. From there, we went home.

She's home, armed with a new pain medication {Naproxen} in addition to an increase in her Neurontin doses and her usual Oxycodone dose.  I'm not sure why her pain is so much worse these past few days, but it is intense and she needs to get that under control.  I can't imagine the pain.

Peyton has done well at home so far.  I've managed to get her on bipap tonight.  She really needs to be using it.  It's sometimes difficult to get her to tolerate the mask, but it really is for the best that she wear it.  She's getting oxygen in addition to the bipap.  I think she has finally settled for the night, but it was a little bit of a rocky start.  Hopefully she will sleep through the night.

Her feeding schedule has changed a bit.  The nutritionist in the hospital recommended an increase in the volume of Pediasure she gets each day.  We were on a good 24 hour schedule, but since she came home, the time one feed ends and the next begins is a little later than I'd like.  You hang a bag and it runs for 24 hours.  We had been changing it around 8 or 9am but now it's late in the evening, so I'm debating staying up late versus setting an alarm to get myself up to change the feed.  

I am fairly exhausted right now.  I could barely move off the couch today.  Unfortunately, people needed clothes, so I eventually had to do some laundry.  I don't know that there is a way for you to fully appreciate the level of emotional and physical exhaustion I am feeling right now.  I've you are or have ever been a caregiver for a sick family member, you probably have an idea.  We have our home nursing, so that is good.

Hopefully Peyton's pain gets under control soon so that she can at least be comfortable again.  I don't anticipate her need for oxygen while she's awake to change at this point.  I think that this is a new "normal' for her.  I would like to see that change, but only time will tell.  Today was a decent day, though.  All things being what they are - it was a decent day.  

Day 3 Update

I have to say that my admiration for Peyton is at a new high right now.  This poor child has endured more than most and just when you think she's endured enough, she pushes through something else.  Today she had her first ever {and hopefully only} lumbar puncture.  The Neurologist hoped to be able to do this without sedating her.  It was done right in her room.  He and the doctor from the PICU whose service Peyton is on were both in the room as well as a 4th year med student and a nurse.  Once the Neurologist was present, it was non-stop activity for the next 30-40 minutes as Peyton was prepped, trays set up, consents were explained and signed, and so on.  I was also present in the room during the procedure.  They used a numbing cream on the area.  Peyton was turned on her side and tucked into a fetal position.  Now, Peyton likes to lie flat...period.  She does not like to be held down.  It was looking like we might have to reschedule for a date when she could be sedated.  However, they were able to keep her still enough for long enough to get the spinal fluid samples that they needed.  From my view {I was facing Peyton's front side}, I could not see the 3" long needle being placed.  It's not just a long needle, but it's a larger gauge needle.  I think you could drill a hole through the ice frozen over a river with that thing to do some serious fishing.  Ok, it wasn't that big, but it was sizable.  Peyton did get morphine during the procedure.  I do not think she felt much, if anything.  I think her biggest complaint would probably be from being held against her will.  Afterwards, they kept the crib flat rather than have the head raised.  This suited Peyton just fine.  She doesn't like to be on an incline.

She seemed to do well today from a respiratory standpoint.  Well, as good as it gets for her.  I discussed again with the doctor the fact that what we are seeing here is a decline in her overall condition.  She likened it to someone with muscular dystrophy {not what Peyton has}, where over time you see the muscle weakness and eventually internal systems become affected - heart and lungs being the major ones.

There's not a whole lot more going on just now.  We hope to be out by the weekend.  Perhaps we'll be home sometime Friday.  Her g-j tube is due to be changed out next week and we are hoping to have that done before we leave here.  It would save us a trip back next week just for that.

Aside from all of this, the samples from the lumbar puncture will be on their way.  This is part of the studies that Genetics at Children's Hospital Boston needs.  It's not related to this current hospital stay.  I did email Peyton's Geneticist up there to let him know she's in the hospital and that the lp was being done.  I heard back from him.  He let me know that they have begun the gene sequencing with the blood sample of Peyton's that was banked up there when we were there in August.  There appears to be some sort of technical difficulty at the moment, but they hope to have some results within a month.  If you are unfamiliar with genetics testing, just know that tests are not done overnight.  It can take days, weeks, or many months before there are answers.

I just want to thank you all for your incredible support for Peyton.  You have no idea how much it means to us.  Thank you all so much.  Please continue to pray for her as well as for a resolution to whatever technical issues are involved in that genetics testing up in Boston.

I will keep you updated on how things are going here.

Update From Trip to the ER

Peytons gj tube problems continued after leaving the ER.  Really, there was no doubt in my mind that this would be the case.  It was leaking and there was something wrong.  So, first thing this morning, I called peds radiology.  I got voice mail.  I called back a few minutes later.  I talked to the tech and explained what was going on.  He asked me to hold {and, fyi, he knows who Peyton is...we're pretty familiar with the folks up there}.  A minute later the doctor herself came on the line.  In the time it took to get her on the line, she'd actually already pulled up the films from Saturday and knew the story!  I told her exactly what was happening.  Unlike the unknown radiologist who read the films on Saturday, this one said yes, this was a problem and basically asked how soon we could get there.  I hung up the phone and told Peyton's nurse to get her ready to go.  It was a good thing we were going as the tube actually became clogged while doing the meds, so the "g" portion wasn't working at all anymore.

We got to the hospital and went up to radiology.  We didn't have to wait too long before being called back.  Peyton has a brand new tube and no problems in that area now!

In other news, the oxycodone seems to be helping a bit.  She's still not feeling well as far as the respiratory stuff goes.

Our trip to Boston cannot come soon enough.

Another Trip to the ER

We've been doing pretty well for a bit but Peyton wound up at the ER no Saturday.  She's been having some respiratory issues.  It's been a while, right?  She was also having issues with her g-j tube as well as a lot of pain that no one seems capable of dealing with.  I wrote a blog post on my blog about how thing went down in the ER.  You can read it here:

http://fontenblog.blogspot.com/2012/07/how-i-spent-my-saturday.html

Enjoy your holiday weekend!

Trying This Again

Hi there.  I tried to type something last night on my Kindle, but I was having issues.  I tried to save what I had done as a draft, but it published even though it wasn't done and had some nice autocorrect issues.  I had to delete it and wait til I had Ron's laptop here.

So...I am back.

I am updating today to let you know that Peyton was admitted to the hospital yesterday.  On the 14th, she wasn't herself.  Just fussy and tired, but not wanting to sleep.  I couldn't pinpoint what her problem was.  We did attend the Luke 14 Banquet at our church.  You can read about that on my blog here. 

When we got home, she wound up having a low grade fever and she threw up once.  That night, she was pretty restless.  In the morning she was burning up and threw up some.  Her temp was 103.5  Her heart rate was up around 180. Once we got Moira off to school, Ron and I brought Peyton in to the ER.  She was right out of it by the time we got to the hospital.  Ron dropped me off at the door and went to park.  Peyton totally bypassed triage and was taken back immediately.  Within seconds we had 7 or 8 doctors and nurses in the room with her.  Her coloring was not good.  Her blood pressure was very low.  Her heart rate was very high.  Her fever was high.  

They accessed her port immediately and pushed fluids in with a big syringe rather than just start the IV.  They gave her over 300cc's of fluid that way before starting the IV, hoping it would help to get her blood pressure back up.  Her oxygen was also pretty low.  They had to put her on a mask and give her lots of oxygen.  It was a bit frightening to see how quickly she became so sick.

We waited all day in the ER.  The children's hospital is packed.  We finally got into a room around 4pm or so.  She was brought up to the step down unit of the PICU, which is not a place we've been to before.  More monitoring here.  

So far, we have found out that she has rhinovirus and pneumonia.  Other labs are still pending.  

In addition to this, over the weekend, the balloon in her GJ tube had broken and the tube was in danger of falling right out.  However, her home nurse managed to get it secured really well before that happened.  I hadn't actually set up anything to have the tube replaced prior to heading to the ER, so I made that issue one of secondary concern while we were at the ER.  She had the tube changed out today.

We should be getting transferred to a regular room.  I thought it was going to be today.  I suppose it still could be.  We'll see.

I will keep you updated.

Home Again

I must apologize.  Peyton wound up in the hospital overnight when her GJ tube came out last Sunday evening.  I had said that they weren't sure (at the time) if it could even be replaced on Monday, being that it was Labor Day.  Well, after much waiting...and more waiting...they finally decided it COULD be done.  She had a new GJ tube put in late Monday morning.  Then we waited...and waited...and waited...and then waited some more.  And then we waited and finally about 4 hours after the procedure, they finally got the orders to start her feeds up.  Then she had to be monitored for an hour.  THEN we got to come home.  We wound up getting home a little after 7pm on Monday.  INSANE.  BUT...it's fixed.

It's been a relatively calm week since then.  Today Peyton finished up the antibiotics that the Pulmonary doctor put her on a couple weeks ago.  I don't see that the antibiotics did anything at all except give her horrible diarrhea.

Please pray for us, particularly this Sunday as we begin the further reduced nursing schedule of 40 hours a week.  I can't believe just a couple months ago we had 84 hours a week.  Medicaid will soon come to find out what a horrible mistake they made when she starts winding up back in and out of the hospital with regularity.  Sigh.

That's about all the news here for now.

A Week Or So of Updates

Fortunately, there's not tons to report but a few things have happened in the past week or so.

The week before last, Peyton saw the Pulmonary doctor.  We're still concerned about the junkiness she has.  The doctor has her back on an antibiotic which will last for another week.  Oh joy.  She still sounds just as junky.

Last week we met with the Geneticist to go over results from the test that had been done when Peyton was in the hospital back in July - the on that might indicate whether or not Peyton might have a specific form of Muscular Dystrophy.  No news.  The first part of the test showed nothing.  The second part will take another 6 weeks.  Great.

I had surgery on my elbow on the 26th, making me unable to lift Peyton.  Our nursing hours were set to decrease to 40 hours but we managed to hang on to the paltry 56 hours we were given through 9/10/11.  THEN they drop to 40.  I'm not happy.  She had 84 hours a week in June then was cut back to 70 in July and then a few weeks later down to 56s and now it's about to be 40!  It's HORRIBLE. Read up on that situation over on my blog here:

http://fontenblog.blogspot.com/2011/09/being-flexible_04.html

And, last but not least, Peyton is in the hospital.  Oh joy.  Her whole GJ tube came out early last night.  She was admitted because it was Sunday and no one from interventional radiology is in on the weekend and they weren't paging them to come in either.  I should say, they spoke with IR, but they weren't coming in!!  We were very concerned about her being able to have it done at all even today because it's Labor Day!  Good news - she's about to have it fixed.  

What a week.

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:

http://www.radiographicceu.com/images/article_pics/picture17.JPG
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. 

Update

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.

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??

WRONG!!!

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??

WRONG!

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!!

Update

Things have been relatively quiet here since I last posted.  No sudden middle of the night trips to the ER for a clogged g-j tube, or for any other reason for that matter!!

Peyton was scheduled for an eye exam under general anesthetic a week or so ago.  However, that was the day she decided to have a temp of 102.  It was cancelled and moved to March 17th, so we have that to look forward to next week.  

Yesterday we saw the pulmonary doctor.  It went well.  No big changes at all.  We're just to keep on doing what we're doing as far as those antibiotics go.  We did get the one antibiotic switched to a different form which has helped out immensely with the g-j tube getting clogged.  We had made this switch about a week ago.  I let the doctor know and he is happy that it is working out.  It looks like Peyton will be staying on the antibiotics for the long haul.  We go back to the pulmonary clinic in 2 months, so that's another 2 months of antibiotics.  She's developing thrush in her mouth from all the antibiotics.  Two rounds of oral nystatin did nothing, so she's now on another antibiotic to target the thrush.  That makes me happy.  I don't care much for the oral nystatin as we have to be so careful to not let any get swallowed - we use those oral swabs to swab all around inside her cheeks and tongue.  Glad to be on a different form.

We went to the semi-annual "biggest waste of time" genetics appointment today.  Why do I call it that??  Because the very advanced testing she had done at Texas Children's Hospital in her first two years of life (we moved here when she was two and a half) is far more advanced than anything MUSC can do.  The doctor spoke for a bit and basically said, "Yeah...it's some kind of genetic disorder...."  Great.  Thanks.  Same answer as last visit....and the visit before....and the visit before that.  I really wish Peyton was well enough to travel so we can go back to TCH and see her old geneticist.  Who knows, perhaps we'd get the same answer there, although so much has changed in the past year, I'm certain (based on past experience) that the doctor would be sitting with us for a long time discussing her case.  It makes me wonder if there's any testing available through TCH that isn't available here.  Ugh.

Disney World with Moira was fantastic!!  You can read about Moira's birthday here http://fontenblog.blogspot.com/2011/03/happy-birthday-moira.html and you can view pictures from our trip here http://www.facebook.com/album.php?aid=277941&id=690215792&l=6d1cf09192
Aside from this, we're still trying to get Peyton's full 84 hours of nursing each week covered.  I figured February would be a challenge since that's when the increase happened.  March....well, I thought we'd have a little more coverage.  Here's hoping that we're able to get closer to 84 hours in April.  We're currently running about 10 hours or so short each week.  We got pretty close to 84 once or twice, but generally not.  We're also still waiting to hear back to see if we have continuous coverage for the end of April so Ron and I can get away for a few days.  Hard to make plans when you have no clue if you'll have the coverage you asked for over 2 months ago.  Makes you wonder why there was the urgency to let them know the dates we were needing coverage for.  

Please keep us in your prayers.  Things have been incredibly stressful and frustrating in a few areas of our everyday life.  Disney was awesome, but can only imagine how much more awesome it would have been if I wasn't so completely exhausted.  All I want to do is sleep.  I am so tired and worn out.  I feel guilty for the state of my house constantly - it looks like the people who live here just don't give a care.  I care...trust me...I just have ZERO energy.  I feel like I'm so far behind on sleep that no amount of napping will ever catch me up.  

I will keep you posted on Peyton's eye exam next week.  It should just be a routine thorough exam, although there's always the possibility that something has to be done.  One never knows!!  

As always, thanks for your prayers!

Another G Tube Clog

Another day, another trip to the ER.

As I mentioned last time, I'm having to get up a couple times during the night to do Peyton's meds.  I hadn't yet gone to sleep when it was time for the four midnight meds.  I got halfway through and the tube clogged....again.  I worked on it with increasing frustration and tears for close to an hour and a half before going to Ron and telling him she needed to go to the ER.  

I wound up leaving home at about 1:50am.  Not much traffic between here and MUSC at that time of day.  Got to the parking garage in record time.  There was no one waiting in the children's ER waiting room.  We were back in a room in no time.  A resident was in to see Peyton right away.  The attending saw we were checked in before we even got back and she thought ahead and ordered the clog zapper stuff from central supply so that it would help reduce our wait time once in the ER.  Before too long, the clog zapper solution was put into her tube.  Unlike last time, the solution didn't go in easily, and it seemed like more wound up on Peyton than in her.  I wasn't sure it was going to work like it did last time.  In fact, after the hour passed (that's how long it has to sit for), the nurse came in to flush the tube.  It didn't flush.  She got a different syringe and tried again.  It didn't flush easily, but eventually the clog just popped out of the tube into her stomach and we were back in business.  We were out of there and on our way home.  

We got home at about 4:30am.  At that point, I'd been up for nearly 24 hours and was incredibly exhausted.  I changed Peyton, gave her her meds that she missed, posted by insight for the daily bible study I'm doing, and then went to bed by 5:00.  Woke up at 5:40 when my alarm went off, got up, showered, and got ready for the day...sort of.  I did what I needed to to help get Moira fed and ready for school.  The nurse arrived at 7:30.  I updated her.  Moira went to school.  I went to bed and slept til noon.  Still incredibly exhausted.  I slept for maybe another 30 minutes later in the afternoon before Moira came home.  The nurse left at 5:30pm.  Our 5:30pm-10pm nurse called out sick.  Hopefully she's back tomorrow.  We have the back to back nurses again tomorrow...hopefully.  I intend to try for a repeat of today - in terms of sleeping while the nurse is here.  I do NOT intend to try for a repeat of my night.  

Please keep praying for Peyton, but also for me.  My frustration level and stress level is at an all-time high right now.  It's like we keep waiting and waiting for things to work out and get easier...and they don't.  I just want to be able to give Peyton her meds.  Sounds simple enough, right??  Wish it were as simple as it sounds.