Update

Where did this week go??  January??  What happened?  I can't believe how fast time is flying by!

This week started out with Peyton finally having her long-overdue sleep study on Sunday night.  She was to have had it a few months or more back, but each time the date approached, Peyton would be too sick to go.  I think I rescheduled it four times.  I was not looking forward to the study.  The process of getting Peyton all hooked up to all the wires is always a torturous ordeal for her.  I should have just had faith that it would all work out well right from the beginning, because it actually went quite well.  It takes nearly an hour to get everything hooked up and ready to go.  I held Peyton on my lap the whole time.  That in and of itself is a big challenge.  She did just fine.  She didn't start fussing until the very end when they wrapped gauze around her head to keep all the wires in place.  Once that was done, it was time to sleep.

Despite being so tired she was practically falling asleep in the waiting room before being called back, Peyton decided she was wide awake.  It was pitch black in the room and all I could hear was the sound of little fingers pulling on tape.  At some point, the respiratory therapist who was monitoring the study came in and I offered the suggestion of putting these little splints on Peyton's arms so she couldn't mess with the wires.  I just happened to have a set in her go bag, so on they went.  That solved that problem.  Peyton was not having anything to do with sleep for a while.  I think she was just too excited about having an actual bed to sleep in.  Yes, she actually slept in a real hospital bed - NOT a crib.  It was nearly brand new and the side rails seemed like they would contain her.  When Peyton sleeps, she really just stays put for the whole night.  The rails were also padded so she wouldn't hurt herself.  I didn't even need to worry about anything.  She did great in her big bed.  Now, I won't be rushing out to get her one for home - the hospital crib we have at home will be just fine for a long time to come.

It seemed like she was starting to settle when a couple RT's came into the room.  Peyton's oxygen was dropping to just 85% and she was having lots of central apneas.  She was AWAKE when that was happening!!  That's a new one on us!  They suctioned her quite thoroughly so that she'd have clear nasal passages.  She has been very congested in her nose of late, so that could have been contributing to those issues.  They put her on oxygen right then and she finally went up to 95% on her oxygen.  

Throughout the night, the RT came in several times.  In the morning, she let me know that Peyton's oxygen continued to drop during the night and she wound up being put on 2.5 liters of oxygen.  1 liter is typical at home.  Used to be a half liter.  2.5 was a surprise.  They did not try the bi-pap mask during the study.  I think they were satisfied that they could get her oxygen levels up into the mid-90s on oxygen alone.  However, I know that the pulmonary doctor really would like for her to be on bi-pap so as to reduce the strain on her heart and lungs.  So, we will continue to work on the bi-pap at home.

As for bi-pap, over the past week or so, Peyton's done very well at night.  She has slept with it on for as few as one or two hours, and as much as twelve hours overnight!  Last night was less than two hours.  We just have to keep on trying.

Peyton was scheduled for an eye exam under general anesthetic on Thursday.  However, Peyton decided now was a good time to get sick, so that was rescheduled to March 17th.  She started to get sick on Tuesday.  She had a fever and was throwing up a bit.  She was like that for two days.  Today, she's still having some vomiting but the fever is gone.  She's very, very junky sounding.  We're suctioning tons.  Poor Peyton.  It can't possibly feel good to have that much junk in your system that you just can't clear on your own.

The big news of the week was that the mycobacterium was finally identified.  It's called "mycobacterium immunogenum".  What is it??  Your guess is as good as mine.  Every search result I found when I Googled that had something to do with studies where this mycobacterium was found in relation to machining fluids used by machinists (i.e. in the automotive industry, for one).  It's apparently linked to a condition called hypersensitivity pneumonitis.  That condition isn't something that they said Peyton has.  I feel really bad - I guess I'm going to have to pull Peyton out of her shop class.  :(   Seriously...HOW on earth does Peyton have THIS in her lungs??  She wouldn't be Peyton if it didn't have a quality of mystery about it.

Anyway, this bacteria must be pretty rare as there is little information on it.  It's a non-tuburculosis bacterium.  It's penicillin-resistant from what I've read.  The treatment plan is lengthy.  It's also unclear as to whether or not the bacteria will respond to the treatment at all.  For now, she is going to be on a 2 month course of antibiotics - Cipro and Biaxin.  They aren't sure it will respond to Cipro, but she has to be covered by two antibiotics, so this is what they went with.  The idea is that if she is responding after a couple months, then the treatment plan will go on for another 6+ months!!  If it isn't responding after a couple months, then it's likely that this bacteria is not what has been making her sick and so they would just cease the treatment at that time.  I'm not sure what to hope for here - 6+ months of antibiotics and hopefully she's well at the end...or many months of antibiotics which result in nothing but horrible diarrhea and horrid diaper rashes from prolonged use of antibiotics.  Praying that this treatment works!!

In other news, Peyton had a visit from her case manager last Friday.  She did an assessment on Peyton's level of care, and she was able to put in a request for an increase to Peyton's home nursing hours.  When she was originally approved, she was approved for 56 hours per week.  In January, we had an assessment which resulted in a temporary four week increase to 72 hours per week.  As of the 30th, we were back to 56 hours.  The end result of last Friday's assessment was an increase to 84 hours per week!!  It's subject to monthly re-evaluation, but it's more or less a permanent thing since her requirements aren't going to lessen.  

Now the key is to get the staffing for that many hours.  It's awesome and we are so blessed and grateful to have this.  We know it was a struggle to get the 72 hours per week staffed - we actually never got 72 hours in a single week until the last week of that temporary increase.  We know it's hard to staff so many hours and expect it to take a while before we can get onto a good schedule.  We're not off to a great start for February, hitting 60 hours this week and not quite to 56 hours the next couple weeks.  We'll just be patient and pray that we can get the hours.  Anything we get is a huge help, so it's all appreciated.  Now to come up with a plan on how to use my time whenever we do get the 84 hours covered!! 

That's about all that is going on right now.  Lots of stuff happening.  Praying that whatever illness Peyton has going on right now clears up soon! 

Mycobacterium

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.  

http://en.wikipedia.org/wiki/Mycobacterium
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!!! 

Cultures

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!

Success!

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:

http://www.wisegeek.com/what-is-bipap.htmhttp://en.wikipedia.org/wiki/BiPAP
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!!

PRAISE GOD!!!!!

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)