Tuesday, January 25, 2011


In doing some online reading, I've come to find out it is "mycobacterium", not "micro-bacteria", although I could have sworn that's what they were saying.  

There's some interesting information in the above link.  I love the part where it says that they are notoriously difficult to treat.  No kidding!!! 

Monday, January 24, 2011


Peyton saw her pulmonary doctor this morning.  The doctor heard all the junkiness that we normally hear.  However, she said her lungs sound symmetrical and she didn't hear anything in her lungs that indicated that there might be an illness brewing, so that's good.  She has added a couple different medications.  Actually, one is replacing an existing nebulizer med - it's the same thing only in a higher concentration.  The other is an "inhaler" version of a nebulizer med, which will be used most of the time.  We'll use the nebulizer version if Peyton's sounding particularly wheezy or worse than normal.

The other day I got a call from the pulmonary nurse practitioner.  She let me know about some information they've received on the cultures taken during the bronchoscopy a couple weeks back.  On the regular old run of the mill bacteria panel, NOTHING grew out.  I thought that was odd considering how she's been so sick so often.  On the anaerobic bacteria panel, there was a small amount of growth, along with some yeast.  When I spoke with the doctor today, she indicated that this is not surprising considering the fact that she aspirates.  Any secretions in her mouth that are aspirated would contain whatever bacteria might be in her mouth.  Such bacteria is treated with one of the many many drugs she's had over the past year.  She's not putting her on anything at this time though.

The odd thing was this - when the nurse practitioner originally called, I missed the call.  I missed the fact we had a voice message, so got the call to call her back a couple days after the fact.  When I called her, she was out of the office for a couple more days.  So until she returned my call, I didn't know any of these results.  Apparently either the morning she called me back or just the day before, all of a sudden some micro-bacteria started to grow from the cultures taken.  I guess they were surprised.  I assume they thought they were done when the anaerobic stuff started growing out.  The nurse let me know that the lab needs to wait on this micro-bacteria to grow out more - perhaps another couple weeks (which would be another week or so from now).  They were going to try to identify exactly what it was so that they can figure out how to treat it.  The thought it that this *could* give us a clue as to what has been plaguing her for the past year.  And when I say *plaguing" her, I truly hope to God that it doesn't come back showing she has the plague!!

So, today when I spoke with the doctor, she brought up this micro-bacteria.  They still haven't identified what it is, but the lab has ruled out Tuberculosis!!! Yikes!  The thought of Peyton having TB hadn't even crossed my mind!  However, I guess this is the sort of bacteria that they are looking at in order to determine what it is Peyton has!  I guess if it's a micro-bacteria, the answer isn't going to be an everyday run of the mill bacteria!

She also spoke about how Peyton has a cystic fibrosis *like* environment.  She doesn't have CF, but the environment is similar.  She said to me that given the "host environment", it is very likely that Peyton will be more prone to these micro-bacteria infections, like CF patients are.  She also said that often the micro-bacteria just hangs out there and just *is*.  It may or may not respond to treatment.

Once identified, Peyton will be treated.  Treatment could be anywhere from three to nine MONTHS in length.  It will involve multiple antibiotics.  I don't know if they will be IV antibiotics or liquid antibiotics that can go through her feeding tube.  I don't know how many will be involved.  The idea is that within a few months we'll see how she's responding.  If there's no response at all - as in, Peyton's baseline remains where it is - then likely it's not going to respond and they may cease that particular treatment.  So, it is possible that even when they start treating Peyton she could still wind up sounding exactly like she does right now.

Outside of that, we had a little more success with Peyton's bi-pap.  The night I wrote about her falling asleep with the mask on and the nurse actually being able to hook it up and turn the machine on, she stayed asleep for about an hour and a half.  We haven't had it happen since, until nap time today.  She got Peyton on the bi-pap and she slept with it running for about 2 hours!!  First, hopefully she gets to sleep at a decent time.  Second, hopefully she falls asleep with it on again!

That's about all the news for now!

Wednesday, January 19, 2011


I am thrilled to be giving a PRAISE report tonight!!!

It was decided when Peyton was in the hospital back in November, that she really needed to go on bi-pap for her sleep apnea.  In case you don't know, Peyton has severe central sleep apnea, as opposed to obstructive apnea.  Unlike obstructive sleep apnea where there's an enlargement or other sort of blockage of the airway causing the apnea, central sleep apnea is where the brain is simply not doing its job in telling her to breathe! Since she was a baby, Peyton has had to use oxygen at home.  She gets it via a nasal canula.  This just provides a constant stream of oxygen to her while asleep, but if she's stopping breathing during sleep, she's stopping.  Without the oxygen, her oxygen saturation levels drop into the 70% area while she's sleeping.  Sometimes lower.  They need to be up over 95%.  Over time, sleep apnea can cause damage to the heart.  We've already discovered since November that she has a mitral valve prolapse and a heart murmur.  The doctors decided we really needed to try to get her on bi-pap to help her rest more comfortably and hopefully ease some of the strain on her heart.

On November 14th, Peyton was discharged from the hospital with a brand new bi-pap machine.  You can read more about bi-pap here:

C-pap is continuous pressure.  Bi-pap is two pressure settings - one for inhaling, one for exhaling.  Essentially, if she's not breathing, it can force air into her lungs.  Further, b-pap is considered a form of non-invasive ventilation.  So, for Peyton, this is kind of a last resort before moving to having to put her on a permanent ventilator - and that is something that we are strongly opposed to.

So, when she was in the hospital, someone from the medical supply company delivered this shiny new machine to us at the hospital and went through the long process of explaining how to use it, as well as fitting Peyton for the mask she'd have to wear.  I've previously written about how having to do the cough assist treatment on her is like absolute torture.  With the exception of the rates of the pressure used, having the bi-pap mask on her was no different.  Torture.  It was horrible having her fitted for it.  We felt so defeated.  We knew this was something she needed, but just felt like there was absolutely NO WAY that she would EVER tolerate the mask on her face, much less actually be able to hook the machine up to it and use it!  Even the man who delivered us told us that he's NEVER had a 4 year old patient tolerate the mask before.  NEVER.  Great.  

The machine has sat in its case since November, barely seeing the light of day (or night as is intended!).  Any time I tried the mask on her, it was torture.  However, our extremely diligent nurse, Emily, has worked with Peyton every day that she is here with her just trying the mask on and hoping that one day she'd tolerate it.  We even switched up Emily's shift from a morning to late afternoon shift to a noon til 10pm shift so that she could work with her around nap time and again towards bed time.  The hope was that someday Peyton would tolerate it and we could hook up the bi-pap machine and actually USE it!

In the past week, she put Peyton through bi-pap torture as usual.  At times it seemed Peyton wasn't actually seeming to be as fussy.  That was pretty amazing.  Now, she still didn't like it, but things were looking up.  A few days ago, during her early afternoon nap, Peyton actually fell asleep with the mask on!  IT wasn't hooked up to any tubing or to the machine, but she was asleep with the mask on!  It didn't last her whole nap time, but it was another positive step.

What I am excited to report tonight is this.  As I sit here typing, Emily is in Peyton's room with her monitoring her, not only WITH the bi-pap mask ON, but with it HOOKED UP AND RUNNING!!!!  This is a HUGE triumph!!  They said it couldn't be done!!

Praise God for this miracle!!  Now, it's 9:21pm and I don't know how long Peyton will sleep.  If it's a 'normal' night, she'll sleep til 7:00 or so in the morning.  Wouldn't it be amazing if she did so this night??  THIS is a miracle.  Emily just came out and is smiling because she can just see that it's helping - her oxygen has been constant at 98% and her heart rate is nice and low.  Just on oxygen, the numbers hover around a bit and the oxygen will dip and rise.  Not so right now!!


You know, Ron and I are in the midst of a 21-day fast.  It's to take sometime out to connect with God on a deeper level.  It's approaching the end of day 10, and I have to be honest, it's been difficult.  I can handle the food part of the fast, but it seems like at the time when I'm trying to make myself more open to hearing God, I'm finding a whole lot of distractions are turning up in my life.  I know that that is just the enemy trying to prevent me from seeking God, but it just makes it so much harder.

I won't go into everything that this fast means for me, but the one thing that I have been praying constantly for is for God to heal her lungs; to help her respiratory issues.  This may not be a 'healing' per se, but she needs to get on bi-pap to help her little lungs, not to mention her heart!

During this time of fasting, one scripture verse has been repeating in my head - and it takes on new meaning for me tonight:

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

Thursday, January 13, 2011


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

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

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

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

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

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

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

Wednesday, January 5, 2011

Endoscopy - Bronchoscopy

Peyton is back home from her endoscopy and bronchoscopy!

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

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

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

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

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

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

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

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

Tuesday, January 4, 2011

Gastro Drama

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

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

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

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

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

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

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

Monday, January 3, 2011

Getting Sick

Well, we successfully made it through the holiday season without Peyton getting sick and winding up in the hospital - just as we prayed for!

(insert sound of needle scratching across a record here) 

Today being the first day after the holidays, when people are heading back to work and back to school, was the day Peyton became sick.  Again.  She seemed just fine all day yesterday until bedtime.  She just would not go to sleep.  she was fussing a lot, which is just not typical for her.  She required a lot more suctioning.  Then it became a situation where she was coughing and becoming hoarse with all the coughing.  It was like she was trying in vain to clear something from her airway but couldn't.  Suctioning wasn't helping.  She was gagging a lot and threw up a couple times.  I, myself, had been under the weather for the past few days, so was still kind of out of it myself last night.  I got up a couple times to help Ron, but had to go lie back down.

Then came nearly 3:00 in the morning this morning.  Peyton was still awake,still screaming and crying, and still inconsolable.  It was somewhere around this time where Ron and I switched off and he tried to grab a little sleep while I sat with her.  Her heart rate had gone way up, which is consistent with a fever.  Her temp was only 99.5.  A little later on it was 100.7.  Then it was 101.7.  I gave her some Tylenol and just sat with her and rocked her for ages.  I finally swaddled her and held her close.  I rocked her and cried and prayed for her.  April, if you are reading this, I can't tell you how often I looked at your painting over her crib and prayed Jeremiah 29:11 over her last night.  It truly was comforting having it right there to look at while struggling to console her.

Peyton catnapped for maybe 20-30 minutes but then suddenly awoke with the inconsolable screaming again.  Then she started to gag like she was going to throw up.  I managed to get her in her crib and get the suction going before she did.  Once again, she had some of the bloody material in what came up.  Not good.  So, on top of whatever was going on with her, the gastric bleeding reared its ugly head.

I swaddled her and rocked her some more but somewhere around 5:40, I just had to put her down.  I took a time out, grabbed my laptop, logged in to www.youversion.com so that I could read my daily bible readings so I could try to start my day right.  Well, continue my day - it started at 3:00am.  I'm taking part in what our pastor has called the "Daily Wisdom Challenge".  Read about that over here: http://fontenblog.blogspot.com/2011/01/happy-new-year.html
I am glad I took the time to do that, although I did find it more of a challenge to come up with a 140-character-or-less piece of wisdom to tweet about this morning.  God created sleep - and Sarah saw that it was good.  Evening came, and morning came....with no sleep.  (fyi, that was not the kernel of wisdom I imparted on my fellow Seacoasters at 6:00 this morning)

While Peyton slept, I grabbed a quick shower so I would be ready for when the nurses came this morning.  We had two nurses today - one was orienting as a possible back up.  Ron and I were on the fence during the night as to whether or not to go to the ER.  We decided to hold off until the nurses came and until I could talk to the nurse practitioner in the pulmonary clinic.  That would be the tougher one. She's in clinic all morning, so I knew I wouldn't speak with her until after noon.   I figured either she'd be find with nursing care until I could speak with the NP, or she'd be bad enough where we'd just wind up going to the ER anyway, so it wasn't too big a deal to me to have that be the case.

Just as I expected, the NP called me back just shortly after noon.  I had left a message with all the details of Peyton's condition - increased heart rate, lower oxygen, fever (up to 102 by that point), increased work of breathing, lethargic (who wouldn't be with no sleep all night??), etc.  She was going to call in an antibiotic prescription for Peyton to get started on.   I mentioned to her that I'd called the GI clinic last week about the continued gastric bleeding but hadn't heard back.  I also mentioned she'd had blood work done in the GI clinic on 12/16/10 and had heard nothing back on that.  I figured since they've spoken to each other regarding Peyton recently, perhaps she could act as an intermediary for me and get the information from them that I've been waiting on.  

Later this afternoon, I received a call from someone from the GI clinic.  She basically said upfront that the GI doctor and pulmonary doctor spoke about Peyton and she needs to have a bronchoscopy and endoscopy ASAP.  They want to do it Wednesday.  I mentioned Peyton is sick with a fever.  She said they are aware.  That tells me the level of importance.  If they are willing to sedate her (yes...another general anesthetic is involved) while she is under the weather, it must be serious.  The nurse I spoke with in the GI clinic indicated that this gastric bleeding she's having just isn't good.  She spoke with the endoscopy coordinator and the only thing that could hold up the procedure from happening on Wednesday is if Peyton's fever doesn't break.  Anesthesia won't be wanting to sedate her if she's had a fever.  This all came about late in the afternoon, and it's been like prayers are being answered because for the first time since the wee hours of the morning, her heart rate is back in the 130s/120s (still a bit high, but not creeping up to the high 160s/low 170s as it was at its worst!).  True, she's had a 3rd dose of Tylenol since it all started, but nothing has helped until now. 

Please pray with us that Peyton's fever breaks, first and foremost, and that the antibiotics (which are quite strong and aren't usually prescribed for children) kick in ASAP so she can have her procedure on Wednesday.  They're going to call me tomorrow to check in on Peyton.  I'm praying I can tell them she's vastly improved.  And, should she have the bronchoscopy and endoscopy as planned, please pray with us that whatever is causing this gastric bleeding is healed and the bleeding stops.  The last thing I want to hear is that Peyton requires some sort of surgery.  As we know from our visit to the surgeon a few weeks back, it is possible that what is going on is all part of the decline in her overall condition.

We covet your prayers for Peyton's healing from this illness and from the bleeding she's been having.  Thank you!