Tuesday, October 18, 2011

Still At The Hospital

As of Sunday night, we were waiting on peds surgery to come take a look at Peyton.  We were also waiting on an ultrasound which would help them see if there were actual pockets of infection in the abscesses.  Neither ever happened by the time Monday morning rolled around.  When the pediatrician did his rounds Monday morning, he took a look and decided to scrap the ultrasound altogether.  He had surgery paged and they came to take a look.  The redness had extended beyond where it had been.  The inflammation was a lot worse than the night before.  Clearly, the infection was spreading.

Peds surgery came around and they decided that it would be best for Peyton to have a little surgery to try to completely drain the abscesses.  There was discussion about how best to do that since she's not a good candidate for anything other than a complete general anesthesia.  They decided to take Peyton up to the procedure room in the PICU where they had a doctor up there administer and monitor her with conscious sedation.  He used ketamine and propofol.  I guess he gave her a pretty hefty dose because she was still fighting after all the ketamine was administered.  I was holding her hand and she had a tight grip the whole time. She was moving around a lot.  With the propofol she calmed down some, but she never closed her eyes.  She never went to sleep.  She never lost her grip.  It lightened a little, but never lost hold of my hand!  She fought that anesthesia.  She wasn't feeling the procedure (at least not that we know) but she was not out!

The procedure went well.  I got to stay with her the whole time.  I managed to stay on my feet this time!  :)  They didn't get as much out of the abscesses as they thought they would, but they did get some out.  The surgeon left in a piece of tubing.  There's two incisions.  The tubing runs in one opening and out the other about an inch and a half below the first opening.  Then the tubing is tied together in a knot on the outside.  I guess it holds the area open to drain.

As of this morning, the inflammation is way down and the area is less red.  It's still pretty red right around the main area.  Where the redness had spread is still red, but not bright red like it was.  It also  hasn't extended beyond where it had gotten to yesterday.

She's on a couple different antibiotics for now.  I haven't had any word as to how long she will be in the hospital.

You can read more on all this over here:

Sunday, October 16, 2011

How Our Weekend Went

Saturday morning was all about the Race For The Cure.  We actually got out as a family.
We got home from the race around 11:00am.  The nurse arrived at noon.  When she arrives, she does a routine assessment.  She found that what appeared to be a diaper rash starting on Friday now appeared to be a couple of abscesses.  They were dark and pretty hard around the area.  She was also pretty red and inflamed.  Her temp was about 99.3.  Ron, the nurse and I debated bringing her to the ER.  We decided ultimately that if there was even a question that we might, then we might as well go now.  So we did.  
Peyton was seen right away in the ER.  The doctor felt that the abscesses, while definitely present, were still relatively small.  She said that if they were to drain them, they'd have to sedate her.  First, she's allergic to Versed, which is what they'd typically use.  Second, with all her health conditions, she's not one you just jump into sedation without a really good reason.  We got an antibiotic and were sent home.  The doctor said she would be in on Sunday as well and to come back if we felt like things weren't improving.
On Sunday morning, I woke up and saw that Peyton's pulse ox monitor was displaying a heart rate of 173!!!  She's normally around 105 or so first thing in the morning.  I get concerned when it's creeping up in the high 120s.  I took her temp - 102.3.  I woke Ron up and told him to get ready.  He immediately thought it was the abscesses but I said no, it's the heart rate and temp.  The abscesses too, though - they were far worse.  The swelling had increased tremendously and the area that was hard had expanded.  I wasn't sure if the other issues were symptoms of the infection or if we had a potential respiratory issue going on as well because she's had some increased secretions lately which were also yellowish.
Back down to the ER we went around 7:00am.  Again, we were seen right away.  The resident said the abscesses would have to be drained.  She had to discuss with the attending since there was the whole sedation issue.  They ultimately decided to give her morphine and to use a numbing patch over the area.  Then they would incise and drain.  Eventually, they began the procedure.  Poor Peyton was such a little trooper.  My heart goes out to her for all she endures!  She had to have 4 or 5 shots of lidocaine in the area first.  Diaper area, people.  OUCH!!!  I watched the procedure and I watched her.  She was not happy and I don't blame her one bit.
Suddenly I started to feel a little light-headed.  There was a chair right at the bedside, so I sat and continued to comfort Peyton.  The nurse was on the other side of the bed opposite me.  She asked if I was ok.  I told her how I was feeling.  The feeling continued.  I got a little nauseous.  The doctor said "Mom looks pale."  Then the nurse told me I should transfer to the recliner type chair that was beside the one I was in.  I did that while she got a cool wet towel to put on my forehead.  She also paged for some gatorade STAT.  When that came, I was feeling a bit more nauseous.  She gave me some bags just in case.  I took a few sips of gatorade.
Not sure how much longer it was, but I vaguely recollect opening my eyes slightly to see my left foot propped on a chair.  I no longer had the gatorade in my hand and the towel was gone.  How odd, I remember thinking.  I remember my face twitching.  Then I remember faint noises all around me.  I remember hearing "She's turning blue."  I remember the surroundings as being dark and fuzzy.  Don't know how to describe how I felt aside from that.  When I opened my eyes slightly, the EMT (who was doing a peds ER rotation) was on my left.  I heard loud beeping on my right.  I was lying on the floor.  I remember people pushing Peyton's stretcher aside as they continued working on her.  The EMT, in his lovely British accent, asked me if I could open my eyes.  I did.  He asked if I was diabetic.  I am not.  They did a finger stick and checked my glucose level.  It was fine.  I had an oxygen mask on my face.  The EMT asked if I knew what day it was.  Sunday.  He asked if I knew what month it was.  I kind of laughed (as much as a recently unconscious person can) like it was a silly question, but I actually had to think about it for a few seconds.  My inclination for some reason was to say December.  I did settle on October.  He said he would skip the other silly questions for now.  Then they began discussing how to get me onto a stretcher.  Eventually I was moved onto one and off I went to the adult ER!
Long story short, I had a vasovagal reaction (a sudden drop in blood pressure) which they think could have been a combination of me not having eaten much and then the sight of the procedure Peyton was having.  I don't get that because it wasn't bothering me!!  Then I had a syncopic episode (fainting).  Then I had a couple little seizures (the twitching I vaguely remember).  They did and EKG, bloodwork and urine test.  Of all that, all that came back was that I had a mild urinary tract infection!  Who knew.  It took me passing out to find that out!  I am sure that was not the cause of my "episode".  They ordered me a food tray.  I ate what looked edible and it was good.  Yes, hospital food was good.  I think I was too hungry to care.  I am fine.  I am tired.  I feel stupid.
Now...while all of this was going on with me, Ron was not with me at the hospital.  Peyton was on her own!  They had someone from Child Life sit with her while she waited in the ER to be admitted.  I was able to text Ron and he came back to the hospital after church.  Apparently I missed the incident at church where a burning bag of popcorn caused the entire building to be evacuated!  Had Peyton been well, she would have been there...in her wheelchair...with no elevator to get her back down to the 1st floor (the special needs ministry is on the 2nd floor).  Wonder how that would've worked out.  The evacuation didn't last long - and the service did actually proceed.
Back at the hospital...Peyton was admitted.  They set up her crib in a spot that would be easy to see from the nurse's station since no one was here with her.  Poor kid!!  When I eventually got up to her room, the resident and med student were in.  I saw the abscess area.  The incision has been packed and the area covered.  It was looking significantly better at that time.  They cultured the drainage.  Waiting for results.  It could be staph or MRSA.  They said it's mostly likely MRSA.
As of Sunday evening. the redness and inflammation is as bad as ever - worse even.  At this time, we're waiting on an ultrasound.  The doctor said it's possible there is another pocket of infection.  They're going to talk to peds surgery to have them come take a look.
For now, we're in the hospital (well, Peyton is admitted...I'm just with her!) and hopefully things will start improving soon!  We appreciate your love and prayers!

Thursday, September 8, 2011

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.

Monday, September 5, 2011

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:

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.

Friday, August 19, 2011

Ups and Downs

The road to recovery since this last hospitalization is up and down.  Peyton has some pretty good days but also some days where she starts running a low temperature or her oxygen levels aren't quite where we'd like them, thus requiring more oxygen at night.  She hasn't been sick to the point of needing to go to the doctor or to the ER, though, which is great!

We've had some big challenges in the last week.  I wrote about those on my blog over here:


Read in order so it makes more sense.  What has happened has been very challenging for us.  A lot of what's going on makes no sense and is hard to digest, but hopefully we can work around this and be ok with it in the end.  There's a lot of info, so I'd encourage you to hop over to the blog to read what I've already written on the subject.

Please pray for this situation for us!


Monday, August 1, 2011


We made it through the weekend!

Peyton is feeling better still.  She still sounds kind of junky and has a lot of secretions, but overall, improved from last week.

We had her follow up appointment with the Infectious Disease doctor who, as it turns out, also attends Seacoast!  He is so nice.  Anyway, he said she sounded better today than she did at the appointment just the day before Peyton went into the hospital, so that's encouraging.  He stopped her antibiotics.

Please keep praying that she continues to get better and that we do not start a cycle of one hospitalization after another with ongoing respiratory issues like we had last year!

Friday, July 29, 2011

Heading Home!

It is official...Peyton is being discharged from the hospital today.  We are just now waiting on the paperwork to be processed so we can get out of here!

Peyton is sounding much better.  Not 100%, but definitely better.  We're coordinating our arrival home with her nurse manager from the nursing agency so she can assess her prior to the nurse starting her shift today.  I am hoping we'll be out of here by noon.  Wouldn't that be nice?!

Thanks for all the prayers and support.  I'll keep you updated on her progress.

Thursday, July 28, 2011

Greetings From MUSC!

Peyton's still here in the hospital.  She is improving though.  The doctors rounded already this morning and they think she is sounding a bit better, but needs some more time on the IV antibiotics that she is getting (there are 2 different ones).  She is having an awful lot of really thick secretions, so they are going to talk to the pulmonary doctor about decreasing one of her meds for now.  It helps manage the secretions, but it also thickens them.  If they can decrease temporarily, then maybe what she's coughing up will be easier for her to manage.  They are also going to talk to the doctor in infectious diseases about switching over to an "oral" antibiotic (to be given through her g-tube of course).  If all goes ok today, they would probably switch her over tonight.  She is a bit anemic, so they are increasing her normal daily dose of iron.

Please keep praying for Peyton.  If all goes well there is a possibility they could start talking about her going home tomorrow.  


Wednesday, July 27, 2011

Still at MUSC

The fun continues at the hospital.  Peyton's doing alright.  No fevers, which is good.  However, she continues to sound really junky.  This morning she had tons of really thick dark yellow secretions that she was coughing up.  Coughing up is a good thing though.  The respiratory therapist was in shortly after that and she sounded much better after all her treatments.

The doctor was in this morning and it seems like they are talking about this being pulmonary edema.  They are going to cut back on her IV fluids and free water.  Hopefully they won't have to give her any special meds for the edema.  She is still on a couple different IV antibiotics as they are treating as if there is a pneumonia.

So far we are doing ok in our tiny little space here.  Keep up the prayers that Peyton improves soon!  Thanks.

Monday, July 25, 2011

We're Back...

....in the hospital.   :(

Peyton woke up this morning and her oxygen saturation was low, so I wound up keeping her on oxygen throughout the morning.  I actually had to increase it to more than twice what she normally gets when she's sleeping.  In addition, her heart rate was a little higher than normal.  By the time the home nurse came at noon, her heart rate was over 160 and she was still on oxygen, although I'd been able to lower it a bit.  She also had a temp of 101.4.  She called the Infectious Disease doctor and he recommended that we bring her to the ER...so we did.

We got into an ER room quickly and the doctor was in very shortly thereafter.  Within minutes, we knew she was being admitted.  Same old respiratory issues as before, it would seem.

I just saw the doctor and he said she's looking better than what was described.  I would agree.  I don't know if it's the heavy duty antibiotics she is on, prayer, someone watching over her, or what it is, but she's quite improved.  We'll see how the night goes and how her chest x-ray looks tomorrow.  I'm not sure how long she'll be in the hospital, but they are well aware of her history and are keeping a watchful eye on her!

Will report back tomorrow on how she's doing!

Update From 7A

Peyton had an "ok" night.  Her oxygen was low this morning and it took a bit to get it back to where it should be.  She's really junky sounding.  More so than last night.  The doctor last night thought she seemed to be improving from how she was down in the ER.  This morning, I'd say she sounds worse than in the ER, but without the fever.  They're running all kinds of cultures, as usual and she's back on precautions because of the respiratory infection part of things.  Doctors/nurses have to gown up before coming in.

I'm just hanging out here, spending time with Peyton, catching up on my blog and bloggy friends, reading some scripture, etc.

There IS news to report...over here:

It has to do with Peyton and it's some news you'll want to hear!!!  :)

Will update later on.  As always, we appreciate the prayers for Peyton!

Tuesday, July 19, 2011

Hello...It's Been A Long Time!

It has been a while since I posted!!  If you assumed that all was going reasonably well in our world, you'd be right.  Peyton's been holding her own for the past little bit.  Still really junky at times.  Still requiring lots of suction.  Occasionally getting a little sick, but never amounting to much.

Yesterday she had a follow up with the Infectious Disease doctor.  For the past couple weeks, she's had these off again on again low grade fevers...mostly on again for the past 5 days or so.  Her heart rate has been higher than normal as well.  Suction needs have been increasing.  He agreed that something was going on, but was hesitant to start her on anything unless we knew for sure that we had something really going on.  The last thing we want is for her to become immune to antibiotics.  He said that if her temps rose above 100.4 to give him a call.  So far, the highest has been only around 99.6.

What a difference less than a day makes.  Peyton woke up at about 4:30 coughing and gagging and definitely needing suctioned.  She was also throwing up a little.  She continued to cough.  It was like something was stuck but it wasn't coming up.   Poor little girl.  It just wasn't clearing so she continued to cough intermittently.  She finally settled around 5:00 but continued to cough a little here and there.  Then it was back to the throwing up a little again around 7:30 or so.  She felt pretty hot, so when I changed her diaper I checked her temp.  101.3!!  In addition, her oxygen was only at about 93% while ON oxygen.  That has improved a little.  Her heart rate, though, has been ranging between high 150s to low 170s!!  It should be in the very low 100s.  108ish, like.

Just after 8:00, I got on the phone to call the doctor.  He actually answered himself and I spoke directly with him right then!  He is concerned about aspiration pneumonia (or the risk of, at the very least).  He wants to start her back on some antibiotics today.  He said we should see a difference after about 48 hours.  If not, I'm to call back.

So, while we've had a pretty decent run of it, we're putting Peyton back on antibiotics.  We appreciate your prayers that she responds well and we see much improvement in the next 48 hours.

Thursday, June 23, 2011

God is GOOD!

I last wrote on June 6th requesting prayers for Peyton because she was coming off all antibiotics for the first time in months.  I have to say that God is so very good.  Those prayers are being heard and are being answered!  She hasn't gotten really sick since she came off.  The occasional fever, yes.  The occasional odd thing, yes.  But definitely not really sick and definitely not needing to go back on antibiotics!!  Praise God!!!  She's sounding pretty junky and requires a good deal of suctioning lately.  She's been running low fevers and has increased heart rates lately as well.  However, on the whole, she's doing remarkably well, all things considered.  She's not where I want her to be, but I'm sure with more and more prayer, she'll get there.

The not so great news right now is that Peyton's home nursing hours are being cut from 84 hours a week to 70 hours a week effective July 3rd.  70 hours sounds like a lot...and it is.  But she needs every one of those hours!  She was allotted 84 hours a week back in February and it wasn't until this month that she actually really ever GOT all her hours consistently.  Thank God we changed nursing agencies, but now her hours are being cut!  I suspect it's a budgetary issue and not so much that she doesn't need the hours.  She needs them.  Even with her improving, she needs them.  I've been sleeping in her room for 2 years.  I have to be there through the night just in case she starts gagging and needs suctioned, or something else happens.  The loss of 14 hours a week means 14 hours less hands on time with Peyton.  It means less interaction with Peyton.  It means less therapy time.  Why?  Because I am the one who will pick up what the nurses won't be doing and I have more than just Peyton to be concerned with.  I will do the best I can, but it's going to be a big adjustment and it, no doubt, will impact what quality of life our family has right now.


On a positive note, I am really trying to listen to what the Lord is telling me through all of these trials.  I wrote a guest blog on a friend's blog the other day about trusting God and finding strength.  The link is:

Little did I know that only two days after I wrote that, I'd be needing to re-read my own words to draw some strength from to make some sense out of today's situation with the nursing hours.  I followed up what I wrote there with a blog post on my own blog:

I don't think I have most of the answers most of the time, but I've had a lot of positive feedback from the posts, so please feel free to share my blog with others who may be in need of encouragement.

And back to a positive note...

We've been with the new nursing agency for a few weeks or so now.  I have to say it is a decision I do not regret at all.  The reduction in hours has nothing to do with them, and they are sympathetic to our situation but it's not up to them how many hours Peyton qualifies for.  Since switching agencies, my stress level has diminished considerably, although I'm still fairly stressed.  

Just to update you on me, lest anyone thinks I have no time to take care of myself (which is often true!), I went for a physical myself a couple weeks back.  It had been a while since I had a general physical.  "Female" stuff, I definitely keep on top of, especially considering my family history!  But general stuff, I haven't managed to keep up with lately.  I have a cyst on my left elbow.  It's been there a LONG time - far longer than I'm willing to admit.  I am seeing a general surgeon in a couple weeks to discuss having it removed.  It's very small and only causes pain once in a while.  It's right where you lean on things with your elbow, so it does get irritated every now and then.  Very annoying.  Not a big deal, and nothing to worry about - but it's got to go!!  I've been having numbness in my arms/hands (continuously on the left side and once in a while on the right) for close to 2 months now.  Talk about annoying!!  I have to go for a nerve conduction study in a couple weeks.  I'm sure it's probably just a pinched nerve in my back or neck and nothing more.  Not worried - just annoying!  I have high cholesterol and low vitamin D.  Nothing I have to do anything about immediately.

So there you have it.  All is fairly well at the moment!  Thank you for the prayers!  They are working!!

Monday, June 6, 2011

Fervent Prayer Needed

Peyton saw the Infectious Disease specialist this afternoon.  We saw him for the first time a couple weeks back and he changed her antibiotics.  She actually went downhill for a bit afterwards - enough to where we were starting to get a bit concerned about needing to go to the ER, but it never got to that point.  We saw him today as a follow up.  Peyton is no better or worse right now than before the antibiotics were changed.  Therefore, it's not likely this mycobacterium which has been making her so sick.  As for what it is, I have no clue.  However, there's no point in keeping her on antibiotics for this if they aren't actually making her better.  The last thing we need is to keep all kinds of antibiotics going and discovering down the road sometime that she's become resistant to them.

So now we wait.  We really need lots of prayers for Peyton now.  This is her first time off all antibiotics since the beginning of February.  Even before that, she spent the better part of the year before off and on antibiotics.  We're concerned about what happens now that she's off of them.  I expect the next couple days might continue as usual, but I worry about the days and weeks after that.  The last thing we need (yes, I realize this is a second "last thing" in this entry!) is for her to be winding up in and out of the hospital like she was all last year.  So please please pray for her health to remain stable (or even just get better altogether!!!) and we aren't thrown into chaos again.

James 5:16 "...The effective, fervent prayer of a righteous man avails much." (NKJV)

Proverbs 3:5 "Trust in the Lord with all your heart, and lean not on your own understanding." (NKJV)

Will keep you posted on how things go.

Wednesday, June 1, 2011


Back on May 11th, I eluded to a piece of potential good news, but I stated that I needed more info before I could really discuss it.  Well, here goes...

First, I hope you didn't pin your hopes to that statement, as it hasn't exactly turned out as I'd hoped.

Several weeks ago, after I had posted something about Peyton's hyperflexibility on facebook, a friend commented back to me about a syndrome he had heard about that sounded similar to what he'd heard me mention about Peyton.  I looked into it and, WOW, Peyton had something like 20+ of the symptoms of this particular syndrome.  It's called Ehlers-Danlos Syndrome.  There are several forms of this syndrome.  Ron and I got pretty excited that after 5 years we may finally be on to something.  As Peyton would see doctors and therapists after this discovery, I would mention it to them.  I even have a checklist of symptoms printed out and in her go bag, ready to show whoever I could show it to at MUSC.  As I would show it to various specialists, they all would say how interesting it was and how it was certainly worth looking into.

I had contacted Peyton's neurologist about this, as we had been discussing the extent to which we'd go to figure out a diagnosis when we saw him in April.  I urged him to speak with genetics and even to possibly contact her former geneticist in Houston.  I didn't get very far with this, but when I brought Peyton to the pediatrician for her well child check up a couple weeks ago, his office put in the call to genetics for me (here at MUSC).  That led to the nurse in genetics calling me, getting some info, and then ultimately letting me speak on the phone directly with Peyton's geneticist.  I mentioned my thoughts on this syndrome.  He preferred to see Peyton in the clinic, but our next appointment wasn't until September.  He put me back through to his nurse and she rescheduled us for June 1...today.

Over the past few weeks or so, I've been getting pretty pumped up about the possibility of having a diagnosis.  Please note, this would NOT cover EVERY issue Peyton deals with.  It's long been my feeling that she could have multiple syndromes.  I knew going into today's appointment that there was the chance that the doctor could completely disagree with my thinking she could have EDS.  I knew going into today's appointment that even a diagnosis of EDS wouldn't cover every issue.  I knew I was taking a chance by bringing this up.  However, as they say, nothing ventured nothing gained.

So, the good news I was hoping to be able to share with you was that of a diagnosis.  I'm not doing that.  I can't.  It isn't what we're dealing with - most likely.  While she has several of the symptoms of EDS, it's quite possible they are symptoms associated with something else as well...we just don't know what that.  You see, people with EDS do not have the level of neurological impairment that Peyton has.  

But here's the good news.  The doctor did a very thorough physical examination of her - noting various odd bruises she's been getting, the clubbing of her toes, and other physical 'deformities' (for lack of a better word).  He talked a lot.  At first, I was fairly discouraged, but as time progressed, it started to make some sense and he seemed to want to try to help with something this visit.  In the 3 years we've been here, there's been nothing that genetics could do for Peyton here that hadn't already been done in Texas.  At the end of the appointment, we were sent to the lab where they drew blood for a few different tests he wanted done.  I have no idea how long it will take to have answers from those.  I know from past experience, genetics testing is not instantaneous - it can take weeks.  

While that bloodwork is being processed, the geneticist is going to get with the neurologist to discuss Peyton.  They are both thinking of a possibility of a mitochondrial disorder.  This involves further testing.  The unfortunate part of this story is that testing for a mitochondrial disorder isn't via a simple blood test.  It is done with a muscle biopsy.  Ouch!!  The doctors will discuss this and get back with me.  It sounds like it will definitely be done.  It is going to take a bit of a coordinated effort to get it set up though.  MUSC can't actually process the biopsied sample.  It has to be sent to some lab in Atlanta, GA, so it will involve some coordination with that lab.  I'm not sure if it's just a "stand alone" lab it's going to or if it's going to somewhere like Emory or another large medical facility.  I just know it can't be done here.  The biopsy, yes.  The study of the sample, no.  It will involve an overnight admission whenever it does happen.

So, that's my story.  It's not the awesome news I had been hoping for, but it is good news in that we're trying to figure this thing out.  I feel, today, like we're back on the road to trying to get a diagnosis.  Not that they weren't doing anything before - they couldn't!  You can't just run random tests for no good reason - when they have no clue what they're dealing with, you can't run tests!!  All the "general" genetics tests were run long, long ago.  Any testing now has to be fairly specific.

I would just ask that you pray for wisdom for the doctors.  Pray for knowledge, understanding and guidance in trying to pin down a diagnosis for Peyton.  As always, we know that even all these tests could turn up nothing for us.  I would ask also that you pray for peace and understanding for us no matter what the results are - whether there are results to report or not.  And pray for Peyton because she's the one physically impacted by the testing process and she's the one living in that little body that's shrouded in mystery for all of us.

Wednesday, May 25, 2011

Uneventful Week

Oh how I love when things are uneventful!!

This week, Peyton saw the ENT.  This was her only doctor appointment this week.  Within a space of 20 minutes, I had checked in, waited in the waiting room, saw the triage nurse, got put in a room, saw the ENT's nurse, waited for the doctor, saw the doctor, and was walking out with a paper with our 6-month follow up appointment already booked!  All's well on the ENT front!!

We had a special review for Peyton's schooling today.  We met with the special ed teacher and a few of her homebound education therapists.  Peyton had a decent school year this year.  She's been through a lot, and has regressed in some areas, but they're looking at her responses to people, and how she reaches for things and they think that she's shown definite improvement.  Of course, it's often on her own terms.  It's not where they'd like for it to be, but she's improved in her social interaction with them and that is great!  There is an extended school year which is at the school for a few weeks or so during the summer.  This wasn't offered to her for this summer.  The reason is really that Peyton has had the longest stretch EVER of school/therapies at home since she started school at age 3.  Even this year, there were lots of interruptions.  However, for the past few months, she's been doing relatively ok and has had more opportunity to have her teacher/therapists see her at home.  So, really, it was decided that she (like most people) just needs a break.  We'll convene again with the group to discuss her IEP for the next school year later in the summer.  We'll decide then if she's to be homebound or exactly how things will work for the next school year.

On the health front, Peyton's new antibiotics are giving her some issues with horrible diarrhea.  This has resulted in a nasty diaper rash which left her very out of sorts yesterday and not sleeping well at all for the past few nights.  She was much improved today, so I'm hoping she'll get a much better night's sleep.

We are finishing up this week with the current nursing agency and will be moving on to the new agency.  After speaking with the new agency this week, we are very much encouraged that we should be able to get her 84 hours a week staffed no problem.  One of the new nurses for Peyton, as it turns out, actually lives in our apartment complex!!  Not in our building, but very close by!  How nice is that for her?!  

I hope all my Canadian family and friends had a safe and enjoyable Victoria Day weekend last weekend.  Wishing my American friends a safe and enjoyable Memorial Day weekend this coming weekend!

Sunday, May 22, 2011

Busy Busy Busy

Peyton has been 5 for a whole week now!  

Peyton has managed to stay ER-free since May 3rd!  This is somewhat of a milestone in and of itself.  Prior to this, we were showing up at the ER every 2-3 weeks!  Big praises to God for allowing this bit of peace in our lives!

This past week has been quite busy with lots of appointments.  I'd like to say we're through with appointments for a while, but we're not. Here's an update on what's new with Peyton:

We saw a new doctor last Monday.  This one is an "Infectious Disease" doctor.  The pulmonary clinic had consulted with him a few times on Peyton's medicines for her respiratory infections, so he offered to see her himself.  The thrush we've been treating for a few months, according to him, is not thrush!  I'm not sure he knows exactly what it is, but he knows what it's not.  We're no longer treating for thrush.  It could just be a nasty coating on her tongue from all the meds she takes.  As for the treatment for her respiratory illnesses, he's made a change.  The pulmonary clinic had already taken Peyton off of the one antibiotic which was clogging the tube.  It was changed to a different one.  She is also on a second antibiotic.  Has been this whole time.  The ID doctor has taken her off of that one and put her on a new one.  So, she's on two new antibiotics now.  She's taking zythromax and zyvox.  If she starts to show some improvement in the next four weeks, she'll continue on this treatment plan for a few more months.  What's a few more months considering she's been treated on double antibiotics continuously since February 2nd.  If there is no change, we'll stop the antibiotics altogether, as we would have basically determined that the bacteria we are trying to treat with these antibiotics is probably not what is causing her to get so sick.  She's been on the new drugs (combined) for nearly a week.  The only change I'm noticing is in the form of horrible, nasty diarrhea. She's spent the better part of the last year and a half on antibiotics, and this has become a way of life...but this...this is worse than anything she's had in a while.  Poor Peyton.  Hopefully it will improve in time.

On Thursday, Peyton saw the GI doctor.  She's in the 43rd percentile for weight, weighing in at just a little over 38 lbs.  There's no muscle to that weight.  What "excess" there is is in the form of flabby little upper arms, a face that's rounding out, a belly that's getting bigger, etc.  Don't get me wrong...Peyton is NOT FAT.  Far from it.  We discussed her weight.  It's been stable for the past little while, which is good.  We don't really need for her to be gaining weight right now.  That doesn't benefit anyone.  The doctor is happy with where things are at from his perspective, but suggested that if her weight increases a bit, to cut back on her pediasure by half a can a day and replace that volume with water or pedialyte so she doesn't lose the fluid intake.  For now, we'll keep doing what we're doing.

On Friday, Peyton had her 5-year check up with her pediatrician.  It was relatively uneventful.  It resulted in a call to the genetics clinic to discuss some possibilities with the doctor and how to go about testing.  This has to do with one of my prior posts where I had said that there was something brewing.  I'll keep it under wraps for now, but might involve some Genetics testing (if possible) in the form of a muscle and/or skin biopsy.  After speaking with the geneticist, I'm not sure what she'll have tested (if anything), but he's going to see her on June 1st rather than wait til our previously scheduled appointment in September.  As for the 5 year check up, all went well.  The doctor had recently traveled to Lourdes, France with a group of "malades" (pilgrims) to visit the shrine there.  He'd actually talked with us prior to all of Peyton's serious illnesses of late about going on this trip.  It would have been last year's trip, I believe.  Peyton just couldn't go - the people who determine eligibility for the trip felt it probably wasn't in her medical best interests at the time, since she required certain equipment.  Now a year has passed and, while we'd love to go, unfortunately I'm sure it's not even an option with everything we're dealing with now.  Anyway, the pediatrician told me that some of those people were asking for Peyton and they prayed for her at the Grotto, which was really special.  He gave me a little bottle of holy water from Lourdes for her.

We will start out this coming week with a visit to the ENT Monday morning.  Should be fairly straight-forward.  This is an area where we could get into "things which we don't want to get into".  When Peyton was at her worst over the summer/fall, Ron and I made some decisions with respect to her treatment plan/care which meant deciding to NOT do certain things.  One of those things is a trach.  There are a few surgical options which *might* potentially help Peyton - they all would involve a trach.  Not doing it.  Those decisions are fairly personal and they were made with much thought and with Peyton's best interests in mind.  So, as for the ENT visit, I expect him to NOT go into surgical options, because he knows what our decisions are.  I expect him to check her ears, nose, and throat.  I expect he'll say the tubes look good (as no other doctor recently has indicated they are anything other than "good").  I expect he may reference her sleep study which she had a few months back.  Maybe we go over that.  Maybe we discuss how the bi-pap is going.  I expect we'll be on our way fairly quickly.

This week ahead is our last week with our current nursing agency.  We'll move on to another phase on the 31st when we do the admission with the new agency.  I've got an email in to them to see if they have an idea of what our first week will look like in terms of staffing.  Prayers are very much appreciated for this!!

We also have Peyton's IEP meeting with the school, so we'll see how they think she's doing and what our summer plan is.  School is out on June 3rd!  That sure crept up on me quickly!  June 1st is the aforementioned genetics appointment.  Back to the ID doctor on the 6th.  I think after that we might just catch a bit of a break from doctor appointments!!  There always seems to be one or two times a year when we're just overloaded with doctor visits.  April/May has been one of those times.  Glad it's winding up!

Will update on how those last few items turn out.  Praying for improved health for Peyton now that she's settling into these new antibiotics.  Praying for some rest for her (she's not sleeping well) and for me (I'm not sleeping well)!

Saturday, May 14, 2011


Sweet Peyton turns 5 tomorrow.  Tomorrow is but 47 minutes away, so I'm posting now to wish my sweet "baby" girl a very happy, happy birthday!!!

I love you sweet girl!!!

I wrote a post on my blog about the occasion:

Wednesday, May 11, 2011

Plunging Back Into Reality

Time for an update on Peyton.  It's been a few weeks!

Well, for the first time in about four and a half years, Ron and I got out of town...on our own....for a few days!!!!  I can't even begin to describe how much this break was needed - for both of us individually and as a married couple.  Truth be told, it's a crying shame that it has taken this long to get this bit of respite.  We needed some "us" time to regroup.  They say that 85% of families with special needs children split up.  85%.  You can't even imagine how much we want to stay in the 15%.  If you have a special needs child, perhaps you are in the 85%, and just know that my heart and prayers go out to you.  I can't imagine how you do it.  If you don't have a special needs child, it may be impossible for you to even imagine that this can happen, after all, marriage is a commitment, hard work, but worth it, etc.  It may be unfathomable that this could happen.  Thankfully we're not (and have never been) at the point of considering a split.  That said, I can totally see how it happens.  Totally.  So, once again, I can't even believe it took us this long to get this respite.  Now that it's over, trust me, it's not going to be another four and a half years til it happens again.

Ron and I left on April 29th (our 11th anniversary) for Gatlinburg, TN.  We stayed a couple nights in Sevierville which is not too far from Gatlinburg.  The third night was spent in Gatlinburg itself.  We did a lot of sight-seeing.  The mountains are absolutely breathtaking.  I've always loved traveling to the mountains - any...doesn't matter where.  We spent the better part of the 30th at Dollywood - yes, the amusement park of Dolly Parton's.  It was quite a lot of fun.  We had a blast.  It really took us at least two full days before we really started to decompress. By that time it was nearly time to come back.

I missed the kids tremendously.  We had round the clock nursing set up for Peyton, and my dad came down to visit and he looked after Moira.  I can't express enough our appreciation to all involved in making this happen.

Our frames of mind were different when we came back.  We felt somewhat refreshed.  Still tired and whatnot, but we got back a little bit of ourselves in that time.

We returned on the Monday and everything was fine.  Woke up Tuesday and began the day as usual and then it was like everything came crashing down in on me.  Why?  Oh, if you've been following this blog for any amount of time recently, you may have a clue.  If you follow me on facebook, for sure you know!  Peyton's tube was clogged.  Right off the bat.  Before Moira even left for school at 8am, I knew I was taking Peyton to the ER.  Again.  Everyone around me can attest to the fact that I was beyond upset, frustrated, angry, etc.  It was like our respite was a dream.  Like it never happened.  Like we could have saved ourselves a lot of money and not left, because in an instant everything was as stressful as ever.  I felt like God was just taunting me with a nice getaway only to have everything revert back to the horribleness of tube clogs and ER visits in an instant.  Ever feel like someone's just playing a cruel joke on you?  And sitting back laughing while they watch your reaction to the attacks?   Yeah, that's how I felt.

So here it is: if EVER my own life depends on a feeding tube, you can just forget it.  Unless they come up with a better solution....forget it.  As for Peyton, it is what it is and we will persevere because it is for her benefit that we do all of this.  But, my goodness, if ever there was an invention that had such amazing benefits on the one hand but horrible potential side effects on the other.

Prior to our trip, we'd gotten our nursing schedule for May, and, again, it had more holes than a hunk of Swiss cheese.  Since our return, we have been dealing with trying to get things straightened out.  To say it has been stressful and frustrating is such an understatement it makes me laugh.  Everything we're trying to do is to ensure that Peyton is getting the medical support that she needs at home so that she doesn't wind up back in the hospital as much as she has been in the past year or so.  If that's not happening, then she's not benefiting.  If she's not getting what she needs, then it's not giving me the respite I need at home on a daily basis.  That, in turn, does not do Peyton any good.  Everything about the schedule we need is about what is best for her - because it works - because it meets her needs.  When the schedule doesn't happen as it should, none of that happens.

Please pray for us.  We've been back a week and a half and I know my own stress level and frustration is absolutely sky high and beyond.  It does no one in our family any good to have even one member of the family feeling like this.  I keep hoping and praying that everything will work out.  I'm still hoping and praying.

Next time I see a Carnival cruise ship docked in downtown Charleston, I may just become a stowaway!!  Just for a little bit! :)

In good news, Peyton had an eye exam under general anesthetic last week and that went as well as we could expect.  Her prescription didn't really change, and the doctor is encouraged that there has been slight growth of her eyes.

I have another potential piece of good news...but I need more info and will post on that later.  A few know what I'm referring to and if you do know, then just know there's no development in that area yet.  I'll leave you all with that little teaser!

Not much else going on.  Isn't that enough??? 

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!!