Clogged

Last time I posted, I commented on the fact that January was over so quickly.  Here we are almost through February already!!

The past couple of weeks have been fairly quiet for the most part.  That's always a welcomed treat for us!  Today, however, was another crazy day!  Once again, Peyton's g-tube clogged because of the antibiotics she is on for the mycobacterium.  They are so thick and gritty.  There's granules in the suspension that just make a big mess.  Anyway, I tried for a while to free the clog and it just wasn't happening.  We got Moira ready for school and we all headed out the door, with me dropping Moira and Ron off on my way to the ER.  

I was not in a good frame of mind this morning.  It is so incredibly frustrating to have to deal with this.  I wish the worst thing about giving Peyton her meds was that she refused because they tasted bad!  Oral anything is not an option, so everything goes through the tube.  If the tube gets clogged, it's bad news.  At least her feeds aren't interrupted because they are through the "j" portion of the GJ tube.  The meds are through the "g" portion.  I KNOW there is so much to be grateful for.  I do.  I really do.  But today just got to me - and quickly.  Between the clog itself, the fact that I had no choice BUT to go to the hospital and face a potentially lengthy stay today, the fact that I am completely exhausted, the fact that the meds she HAS to be on are the culprit, the fact that I don't even know if they are even working, etc. - I just wasn't in a good place.  To a degree, I still am not in a good place.  My head is throbbing.  My neck, shoulders and back are hurting.  I've spent a good portion of my day (at home - not in public!) in tears.  I feel selfish saying this, but today I just wish I could have a "normal" day.  I mean a REAL normal day.

Anyway, on my way to the ER, I thought, you know, it's Tuesday and it's daytime - maybe the surgery clinic is open.  It's them that I have to contact about tube problems because they are the ones who had it put in.  Gastroenterology won't discuss tube issues with me even though it involves feeding.  Go figure.  As luck would have it, the surgery clinic was not open today (specialty clinics operate on particular days of the week).  However, the woman I spoke with did try to put me through to someone.  When she got back with me, she told me that she discussed the situation and was having one of the physician's assistants from peds surgery paged.  By this time I was over half-way to the hospital, so she said she should be able to get with me before I was having to park - ER and clinic are two different parking garages.  A few minutes later, I did get a call back from the same woman, who let me know that I was to head up to where the surgery clinic meets and have the registration desk page the PA.  At least this would save a lengthy wait in the ER.

For a walk-in, I didn't really have to wait long in the waiting room.  However, the PA was still rounding over at the hospital with the surgery team, so I did have to wait for her.  When she got to us, she attempted to flush the tube.  She didn't try the clog zapper stuff that the ER had used a couple weeks ago.  To be honest, I don't know that any clog zapper could have been injected into the tube because it was that bad.  The tube has to be changed out ever 3 months.  This one was due to be changed on March 7th, so she wound up calling radiology to see if they could work Peyton in for this tube to be removed and a new one placed.  It has to be done in radiology so they can watch on the screen to make sure it's going into the right spot.  They were able to take Peyton.  Off we went to radiology.

I didn't have to wait too long in the waiting room in radiology.  When Peyton was brought back, they took an x-ray to see the current tube's position.  Then the radiologist and a couple other people came in and began working on the removal/insertion process.  It's not a real quick procedure.  Fast enough, but it's a little involved.  Peyton did really well.  Apparently the old tube wasn't exactly in the proper position.  Not sure if that would have been part of the clogging problem - likely not - but it wasn't great that it wasn't where it should be.  The new one is in the proper position.

Best moment of the whole hospital experience (which had me home a little after noon - about 4 hours at MUSC)....when the radiologist told me I had to be more diligent about flushing the port!!!!  If there wasn't something in between me and him at the time he said it, he probably might have gotten the full effect of "the eye" that I was sure I must be giving him.  It was one of those moments where you look around and say, "Oh, excuse me, were you talking to me???"  Are you KIDDING ME????  As if between me and the nurses, knowing full well how thick and grainy those meds are, we're just going to put them through the tube and not flush with a decent amount of water???  In fact, we give more than we need to because of that!!  Not to mention the fact that there's about twelve times a day when meds are going through the port, getting properly flushed 
every single time!!!  Seriously???  I'm not being diligent enough????  If you've read this blog even once or twice, I'm pretty sure you get that I'm diligent when it comes to Peyton's care!!

Anyway....we got back home and went on about our day.  The nurse was here when we got home.  She took over while I went and grabbed a power nap.  

As far as other issues go, we don't see any particular improvement at all since Peyton began these antibiotics on 2/03/11.  Actually, in general, most people who come into the house have commented on how she's more tired than before, that she looks tired all the time, how she's not doing certain things in therapy that she was doing even a month ago, etc.  She's not "hospital" sick right now, but there's something different.  Can't put our fingers on what it is, but she's changed.  Even if it's not a huge, drastic change, she's changed.

So, when today happened, it was a clogged tube on top of the frustration of all of this.  There is so much uncertainty.  I don't personally feel like the antibiotics are going to have much of an effect on Peyton.  We see the pulmonary doctor on March 8th, I believe.  Perhaps at that time we'll know if Peyton is to continue on the antibiotics for several more months or if they'll just stop them.

With today's clog and hospital trip came a revised medicine schedule.  Why?  Because everything got delayed because she couldn't get her meds with the tube being clogged.  Why the problem??  Because she's on 14 different meds right now.  Because some are once a day.  Some are twice a day.  Some are four times a day.  With the antibiotics, antacids and iron supplments cannot be given within so many hours before or after the antibiotics.  She takes both antacids and iron supplements.  One antacid has to be given 20 minutes ahead of other meds.  There's a whole lot of pharmaceutical / gastroenterological mathematics that goes into making Peyton's med dosing schedule.  Everything is spaced over the course of the day.  You can't give some meds too close together, so you have to be sure you've got good spacing...for everything.  Now, because of the clogging issues, Peyton's being switched from the suspension formula for one antibiotic to the oral tablet that one would normally swallow.  Instead, we'll crush it up and "dissolve" in water.  Trust me, it's not going to dissolve fully, so it becomes another clog risk.  Maybe not as bad as the suspension.  We'll see.  So, remember, Peyton is on 24 hour continuous feeds.  Now we have to stop feeds 1 hour before this med is given (twice a day) and hold for until 2 hours after the med is given.  That means we only have 18 of 24 hours to feed Peyton.  We have to give her 4 cans of pediasure and 300 cc's of free water in 18 hours.  This means a rate of 69 cc's per hour. The absolute MAX the GI doc wants her at is 50 cc's per hour.  Riddle me that one!!  Increase the rate of the feed and we're risking more vomiting than she's already doing.  We're increasing the risk of aspiration that she's already doing.  Are you sensing my frustration????  Anyway, I've re-set the med dosing schedule and will now be up at midnight giving meds (assuming I actually went to sleep before then)...and 2:50 am.....SO much fun I can hardly contain my excitement at the prospect.  I'll be working on trying to shift the meds so it's not so horrible a schedule, but it will take time.  They can't just be shifted several hours ahead of where they are now all at once!

I'm having such a hard time right now.  We're in a series about "Joy" at church right now.  One week the message was so clear on how complaining can cause you to lose your joy.  Along with probably everyone else there that day, I said I was going to try to stop complaining.  Then we hear about how we are to praise God in all things.  Yes, we should.  I know it.  I do.  I just feel like during the past few weeks of this series on "Joy", most things in my life have been working completely against what I've been learning and loving about the series.  That, in itself, is so frustrating!!

On that note, I have to say I am SERIOUSLY looking forward to a quick weekend getaway I have planned.  Moira's 7th birthday is coming up on March 10th.  In an effort to give her some really good "Mommy-Moira" time, instead of having a big birthday party with all kinds of kids coming, we decided to do something special just for her.  My dad is traveling down here next week.  On Friday after school, he, Moira and I are driving to Orlando.  Saturday will be spent at the Magic Kingdom.  Sunday we come home.  Very quick trip, but it's much needed.  In fact, I would venture to say that right now I need it at least as much, if not more than she does right now!!  Ron has to stay at home with Peyton.  We have regular nursing hours, not overnight, so one of us had to stay behind.  Besides, even if they were overnight we'd have to have someone here locally willing to be a back up person trained and checked off in the event that something fell through with the nurse while we were away.

And in case you are feeling badly for Ron now....we did start talking almost a month ago about a getaway for just the two of us.  Again, my dad will come down primarily to watch Peyton.  We've been trying to get round the clock nursing coverage set up for April 29 to May 1 or 2 (no, we're not heading to the UK for the royal wedding...April 29th is OUR anniversary!).  We have a couple nurses who've told us they are willing to do the shifts over that time frame, but nothing has been set so far - hard for us to make plans when we don't know what's happening.  IF we can get this to work, it'll mean sacrificing some hours during the week ending April 29th and the following week, but it will afford us the opportunity to have a much-needed getaway.  IF we can get this to work, this will mean that Ron and I will GET AWAY TOGETHER FOR THE FIRST TIME IN FOUR AND A HALF YEARS!!!!!!!!!!!!!!!!!!  So...yeah...we are more than a little anxious to get the word that we have the coverage to go ahead and start planning.  Right now it's in the "I have a dream" phase...really not believing it will happen.  Hopefully it will become a reality.

Not too much else is going on for now.  I think that's about enough isn't it?!?!

Please continue to pray for Peyton...throw a couple in for me if you think about it!  Thanks!! 

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!