Hospital Life...Day 3

I am so tired right now.  It has been a very long day and it's only just after 7pm.

I'm going to make a very long story short.  I'll fill in with more details later when I am not so tired.  Peyton is still in the hospital tonight.  In fact, she was moved from the regular unit to the PICU step down unit this afternoon.  She was just not doing very well this morning.  In fact, we just aren't sure what is going on.

A lot of labs were still pending, but what was coming back was negative or the numbers weren't too bad.  Her CO2 level was actually higher than it should have been, but not dangerously high.  She was sent for a CT scan, a skeletal survey, and a shunt series.  The doctor from the gen peds team consulted with the PICU doctor and they agreed we should get Peyton on bipap to help with her respirations and because of that CO2 level.  She is on bipap now, but she's a bit restless.  Not fighting it, but she's not completely still.

As we don't know what is going on, we don't know when she'll get home.  At this point, I think it would be pretty optimistic to assume we'll be home for Easter.  This visit has been yet another bit of proof that things can turn for her on a dime.

Hopefully we'll know more in the morning.  We appreciate your prayers.

Home Again

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

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

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

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

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

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

A Better Day

Peyton had a better day yesterday than she had on Monday.  We did not wind up having to take her to the ER as I had feared we would.  She spent much of yesterday on room air.  She even tolerated her school therapists working with her yesterday {they come to see her at home, so that helps}.

Today is another day.  She had some issues overnight with not keeping her oxygen levels up where they should be.  She didn't tolerate BiPap last night, so she was on oxygen.  Even still, she dropped to 61% at one point.  There was a period of about 10 minutes where she kept dropping into the 70s  and then would come back up to low 90s.  It's the drops that are concerning.  I had to suction her at one point.  She had so much stuff in her throat that the suction unit wasn't even able to keep up with it.  It was so think and so much!

So far today, she is back on oxygen while awake.  Her oxygen saturation is low and her heart rate is elevated a little.  So much for the good day she had.

Keep the prayers coming!  They are very much appreciated!

In Sickness and Frustration

The past 24-36 hours with Peyton has been concerning to us.  I will say up front that she is at home - not in the hospital, so that's good news, right?!  I've talked about how she is requiring oxygen during the day while she's awake.  This has been going on over the past 2-3 weeks.  This is unusual for her.  There's no known reason for this to be happening.  From time to time she will manage to remain on room air, so that is good, but mostly she is requiring oxygen.

For the past day or so, however, she has had lower oxygen levels and a higher heart rate.  The heart rate began increasing further this morning and early afternoon.  It's typical for her heart rate to be in the one-teens but it's been in the 120s.  That's not so bad.  A little high for her, but not horrible.  This morning right off the bat it was in the mid 130s-140s.  It got up into the 150s.

Today was a frustrating day of "hurry up and wait" while I exchanged emails with one clinic {Pulmonary} and then another {Cardiology}.  She's not "sick", although she's had a bit of a fever today.  She's not exceptionally junky sounding - no more than "normal", but she's been on antibiotics for the past week just in case something was brewing.  Some of these symptoms were present last week when she went to the Pulmonary clinic.  It's just that things have worsened a bit over the past day or so.

The nurse practitioner in the Pulmonary clinic relayed messages to the doctors and got back with me.  They think that it's possible that the low oxygen saturation is possibly caused by mucus plugs in her lungs or atelectasis.  Please don't freak out when you click the link and suddenly see the words "partial lung collapse".  Read further where it refers to mucus plugs.  She does not have collapsed lungs, partial or otherwise!  As for the heart rate, they suggested getting in touch with Cardiology.

I wrote up yet another email and submitted that on MUSC's online system.  And waited.  I honestly wasn't sure I'd hear back today.  All day long, I was expecting to have to bring Peyton to the ER but by this point I was thinking we probably wouldn't be going.  In the end, the Cardiologist did email me back but he didn't think it was anything related to her mitral valve issues.

Frustrating day.  One specialty defers to another and that one defers back to the first.  In the end, I don't know that we got anywhere.  Peyton's issues remained throughout the day.  Pulmonary did suggest that being on BiPap would be the one thing worth trying to help with the oxygenation issues.  We haven't had much luck at all with getting her on BiPap lately, so I wasn't sure what we'd do.  However, between the nurse and I, we got her on BiPap and she stayed on for maybe about four hours total - portions of that time were enve while she was awake!

As Peyton is about to go to bed now, she's got a low fever still, her heart rate is up, and her oxygen is a little lower than normal, but her monitor isn't alarming...yet.

As for our nursing issues, we are getting our hours but they are piecing together several nurses to make it happen.  Great to get the hours, but it probably isn't in her best interest long term to have so many people in and out of here, especially when some work in hospital settings as well and others have other patients that they work with in their homes.

Please pray with us for healing for Peyton and for a good resolution to the nursing issues.  I'll keep you posted on how things go here.  As I said, it was a rough day.  I feel like this will just continue until we finally just have to bring her to the ER regardless of what the specialists thoughts on the matter are.

Not Well At All

This morning, Peyton seems to be a little worse.  When I woke up, she was covered in multiple blankets.  Her temp was apparently low overnight (low 96's).  She's been wearing bipap continuously the last couple days.  She was going to be going down to xray, so she was switched to a nasal canula for transport.  When I took her mask off, we noticed her face was very puffy.  She's also pretty lethargic today and her mouth is pretty dry.

We went down to xray, which turned out to be a non-event.  Whatever was ordered was apparently called off for now, so after getting her all situated on the xray table, with oxygen tank and hooked up to the monitors, we had to get her back into her crib with all of that stuff to head back up to her room.

The doctors were by this morning.  While they were out in the hall, I had to suction Peyton.  What I got out was unreal.  Her secretions are SO thick they are almost solid.  There are mass quantities.  They are also darker yellow now.

She is not as well today as she was yesterday.  We don't know what is going on.  I am trying to be strong, but this is unreal.  I don't blame the doctors for not knowing what's going on with her.  They are doing all they can with what they know.  She's on 3 antibiotics.  She' s on IV fluids.  I don't know that there is more that can be done but I just wish we knew what we were dealing with!

Dermatology is supposed to come by to look at the rash on her hand.  Cardiology is now being consulted because of the edema (face/feet).  Infectious Disease is still weighing in.  GI is on board because of the bleeding from the j tube.  She's on the Peds service, although the PICU docs were there for her last week and they are aware of her being in the stepdown, not to mention that they were there for her endoscopy yesterday.  Ortho consulted regarding her dislocated shoulders.  Neurology has been involved as has Neurosurgery.  And Pulmonary is also involved.  That's 10 specialties in case you didn't take the time to count.  11 if you count the Dietician.

So, I would say that they are covering all their bases.  I wouldn't concern yourself with thinking that they aren't doing everything they can at this point!  :)

As always, I will keep you updated.

Update

Just a quick update.

Neurology wanted Peyton to have another head CT done.  She just had one Wednesday but since there's the possibility that her episode this afternoon was seizure related, they wanted to get another.  They did not want to sedate her.  When she had the one earlier in the week, she was so lethargic from being so sick that they didn't have to worry about sedation.  Not the case today.  She is allergic to Versed, which is often used as a light sedation.  That really stinks in cases like this.  So they decided to go with another dose of Benadryl.  She's getting it anyway because she gets Red Man's Syndrome with one of her antibiotics - Vancomycin.  They gave it to her through her IV and that seemed to help.  She was a bit fidgety when they were getting her situated on the table, but they basically put he in a cocoon thing, strapped her in and then used tape across her forehead and chin so that her head would be stable.  They also put cloths around her head to keep it in position.  We all stepped out of the room and the CT was a success.  As for results, I have not heard.

The GI doctor was by a little later on.  I don't know that I mentioned this, but when we got to the room in the PICU stepdown unit, we noticed her j-tube was leaking out bright red blood.  To back up she has a g-j tube.  The g- portion is the gastric tube - all meds go into that which goes into her stomach.  The j- portion bypasses the stomach and goes into the jejunum.  The nurse was told by the resident to let it drain by gravity, so they wrapped it in a preemie diaper and let it drain.  There was a pretty decent amount that drained out.  Obviously this is not normal, so it has to be investigated.  Feeds were stopped as soon as this was noticed.  Anyway, the GI doctor said that in order to determine what is going on, they will need to do a scope.  That is going to be done around 10am tomorrow (Sunday).  There are a number of possibilities, so I'll try not to worry about it until we know for sure.  She will have to be given a light sedation for this procedure.  The doctor from the PICU who saw her came by tonight and spoke briefly about it.

Peyton's pulmonary doctor was by just before we came over to this new room.  He wanted Peyton to be on continuous bi-pap, regardless of whether she was asleep or not.  This is to help keep her airway open in the event she stops breathing again.  It can be torture to get her mask on her when she's awake so she has it on when she's asleep, so the concept of keeping it on her while she is awake seemed a bit daunting.  She's been a bit fussy with it - moving her head around a lot - but she's doing far better than I imagined she would.

Will update more tomorrow.

Boston - Day 4

We had our 5th appointment of the week today.  As with yesterday's appointment, this was not one that was booked before we arrived here in Boston.  The pulmonary doctor here at Children's Hospital Boston suggested that we see a doctor in their sleep center.  He is another pulmonary doctor specializing in sleep disorders.

Once again we found ourselves obtaining some very valuable information at this appointment.  I said to Ron it's funny how we came here primarily for orthopedics, but it's all the other appointments (planned and not planned) that we're getting the most useful information from!

The reason for this appointment was to discuss the use of Peyton's bipap at night since it seems to be an area of trouble lately.  We aren't having much success with her sleeping through the night with it on anymore.  If she does fall asleep with the mask on, more often than not, it's only for a couple hours and then we need to remove it because she's woken up in distress.  We were wondering if it is possible to put her on a sedative to help relax her.

We were with the doctor for a long time as he offered some suggestions.  Some were medication suggestions (in place of a couple she is currently using) and also the addition of a chin strap to her current bipap mask.  We should also be using humidity with her bipap (and even with her nasal canula if we are unable to get her to wear the mask).  Back in the beginning of her bipap wearing days about a year or so ago, someone had suggested not using the humidity.  Why, now, I'm not sure.  It's actually (I believe) in the original doctor's orders to do so.  

I will be touching base with the doctor back home again so that he can contact this doctor so they can discuss the suggestions that were made.

We have two more appointments tomorrow and that's it (that I know of).  We see neurology in the morning and genetics in the afternoon.  I We leave here Saturday, so I think that's about all we can squeeze in for the week.  It will be interesting to hear their take on things.

This has been a very tiring trip for all of us.  I would not ever describe this week away from home as a vacation.  Definitely not.  There is a reason why we don't take family vacations.  The last time we all went away together was in July 2010 for my mother's funeral.  It's just so difficult with Peyton.  First, there's SO much gear to bring for her and our own vehicle is not large enough anymore to carry all of it.  We're very blessed this week to be borrowing a friend's minivan so we could make this trip comfortably!  Second, it's taking Peyton out of her own environment and bringing her into a new one, risking introduction to different germs and so on.  She had a low fever yesterday and I have to say she's not herself today either.  Then there's the fact that while we are not at home, we have no nursing help, so it is extremely challenging.  We have had more than one person this week comment on how huge an undertaking caring for Peyton is.  I live it, so I think it's hard to see sometimes because it's just "life" for us.  But, yes, it is huge and we went into this week with me being exhausted from an IV medicine schedule that has me up several times during the night (this is still going on while we're away).

It's been nice to drive around seeing sites.  If you are friends with me on facebook, you may have seen the photos I've posted.  But nearly every picture is taken from a moving vehicle.  There's no real sight-seeing.  No meals out in a restaurant.  Ron's taken Moira out a couple times just to get her out of the hotel doing something different.  She's become fascinated by Lego for some reason, so he found a Target last night where he bought her a couple little sets so she could have something different to do.  But I would strongly hesitate to call this a "family vacation".  It is not.  I think if there is a need to pursue medical opinions out of town again, we'd have to weight our options very carefully before undertaking this again.  As for a family trip in the future??  I wouldn't be holding a room for us anytime soon.  It's a sad realization, really.  As we near the end of summer (school starts on Monday), I'm seeing all kinds of pictures and posts of everyone else's summer vacations near and far and it's sad to think that that wasn't the way life is intended for us to be as well.  To be honest, that's not the only sad realization we're taking away from this trip.

I will keep you updated on tomorrow's appointments, but if you don't come back here before the weekend, please keep us in prayer for safe travels home.  We leave Saturday morning - very early is the hope.  We will be making fewer detours on the return trip.  I think we're all anxious to be home in our own environment, even if it means returning to a home that was left in a state of chaos from all the pre-trip planning....even if it means returning only to move in a few weeks.  Yep.  We're moving.  Hadn't mentioned that here yet I don't think.  We aren't moving far, but a move is a move.

Boston - Day 3

Today was supposed to be an "off" day - no appointments.  However, the pulmonary doctor here wanted Peyton to be seen by their PT group regarding her "Smart Vest".  This is a vest that she wears which is hooked up to a machine.  It vibrates at a certain frequency for 10 minutes and then increases in intensity for another 10 and again for another 10.  It is to help break up any junk that is in her lungs so she can hopefully get rid of it.  The doctor wanted to make sure that the settings we are currently using are appropriate for her still.

Today we met with the PT and we found that the way we are currently doing things with her is actually very good.  We're definitely using the same frequencies that they would have recommended, so that is good.  She did, however, make some suggestions regarding the number of times per day and the length of each treatment.  We can try doing shorter treatments more often during the day.  We also have a "cough assist" machine which she said we should try to use more frequently as well.  In addition, she gave some suggestions for how we should be combining her breathing treatments with the smart vest treatments.  It was all very good information.

Today was a rainy day here, so we decided that Ron would drive us over and then he'd drive back to the hotel (1 block over), park, and come back.  Well, that didn't go as planned.  First of all, the garage at the hotel is VERY small and it is not limited to hotel guests.  There are no handicap spots and no elevator in the garage (it's only a few levels, but still) - it's not the best set up I've seen.  When the spots are full, they keep allowing cars in and they just park anywhere in the traffic lanes, starting at the top of the garage.  We were on the 2nd level and there was a car parked in the lane of traffic blocking us from getting out.  Fortunately the garage keeps the keys for these vehicles and they moved that one - it took a while though.  We pulled out of the garage and hung a right, but you immediately have to get one lane over and you have only a few car lengths before the light, which was red.  The right lane is a turning lane and we had to go straight.  Finally got into the appropriate lane and through the light only to come to a stop.  We then had to get back into a new right hand lane so we could hang a right into the drive leading up into the circle that is in front of the hospital for valet and drop offs/pick ups.  The line to get in was backed up that whole block and wasn't moving.  By this time, it was not raining and we could have walked after all, but now we were committed to the drive.  We left (we thought) in plenty of time but we didn't get to the front of the building until a few minutes past 10 (the appointment was at 10).  I went up to check in while Ron went back to the hotel with the car (the parking situation was worse when he returned).  We were called back into a room before Ron returned, so he wound up waiting in the waiting room for us and wasn't able to be in the room with us since the receptionists didn't know where we were taken.

Aside from all that, Peyton is running a low fever today and has had two big long naps.  Ron went out this afternoon to a nearby laundromat (note: "nearby" in Boston does not mean quick as noted above).  We packed enough for the kids for the 9 days we're gone and Ron and I knew we'd probably have to do some laundry for ourselves.  Peyton's latest round of diapers are the correct size, but the manufacturer either had a malfunction or they've reduced the size but are still labeling them as the same as they always were (these are the ones that medicaid allows for her - not a known name brand), so she's been leaking like crazy.  We've gone through almost all the pants we packed for her and we still have to get til Sunday!  Laundry was a necessity.  There isn't a coin operated facility here in the hotel, so Ron located a laundromat near the hotel over by Boston University.  We have clean clothes again!!  Woohoo!!

Last night Ron picked up food from a local "hidden jewel" (per one website) called The Squealing Pig.  They had a lot of pub fare.  I had awesome fish and chips.  We split a dessert - a Mars Bar Toastie.  It was 2 Belgian waffles with a melted Irish mars bar and bananas in between with strawberries and fresh cream on the side.  OH MY!!! It was SO delicious.  If you are ever in the area, I highly recommend it!!

No sight-seeing today.  We're all pretty tired and Peyton isn't herself today.  She cried and fussed the whole time we were with the PT today, so I knew she wasn't feeling well.

Tomorrow we see the sleep doctor about her bipap, so I will update about that tomorrow!

Boston - Day 2

Today was the day to see the Pulmonologist here at Children's Hospital Boston.  This was an appointment that was more of a "just because we're here" sort of thing.  However, the appointment turned out to be really beneficial.  In fact, I think it may actually prove to be more helpful to Peyton than the Orthopedic appointment in the long run!

The Pulmonary doctor was very nice.  We spent a LONG time with him.  Lots of history to go over.  In a nutshell, he said that he would love to try to see her back at her baseline before all the illnesses - she may have the potential to get back to there if we can recreate how things were before all the illnesses.  He said a trach is an option he would not take off the table entirely, but would not do right now.  Remember, though, that this is something that we have long been opposed to for many reasons.  He said the benefits would be mainly for airway clearance and that it would not entirely remove the possibility of aspiration.  He had some suggestions as far as medications.  The doctor also said that with everything going on right now, he would definitely recommend a bronchoscopy.  He recommended a chest CT scan.  She has not ever had one before, but he said that she would have to be in her "best" health once she gets past this illness just so we could have the best understanding of what's going on.

As a side note, in a previous post, I mentioned that Peyton's Cardiologist back in Charleston wanted to do a heart cath if there was ever a time coming up where Peyton would be having another procedure under sedation.  It wasn't something he'd just jump into in and of itself.  So, if Peyton does wind up having a bronchoscopy, she will likely also be having a heart cath.  Also note that none of these is being done in Boston.  The bronch was a recommendation for her doctor at MUSC.

We are being set up with a therapist tomorrow morning so we can go over her Smart Vest - she will take a look at how she tolerates the current settings and possibly look at how the settings can be increased (if at all).  They are trying to get us in with their Motility group while we are here.  We also have an appointment at a satellite office in Waltham, MA with a sleep doctor.  This is so Peyton's sleep study can be reviewed and we can make sure everything with her bipap is set up as it should be and that her mask is a proper fit/type.

The Pulmonary doctor today was extremely helpful and he is happy to discuss the matters we discussed today with her doctor back in Charleston.  I've already been in touch with them and have passed along the doctor's information so they can get together and discuss everything in far more detail than I could ever do.

This afternoon, we took a side trip to Salem, MA.  We went to the Witch Museum which Moira described as being "horrible...for a museum."  Sigh.  She would rather have gone to the Ansel Adams exhibit at the Peabody Museum across the street.  She's 8.

Today is also the 11th anniversary of the loss of our son.  I blogged about that:

http://fontenblog.blogspot.com/2012/08/eleven.html

We typically order in a nice dinner and have a cake in his honor.  It's a little different this year since we're not at home.  Ron's off on a walk to grab a nice dinner for us and we will be trying that restaurant's specialty dessert - a Mars Bar Toastie - Irish mars bar, belgian waffles, bananas, fresh cream and strawberries.  Oh. My.  I will have to take pictures.

I will keep you updated as the week goes on!

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)!

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! 

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)

A New Sleep Study

Peyton finished her sleep study early this morning. The official "wake up" time was 5:48 am, although I think I personally only slept for about 15 minutes all night. As expected, the process of hooking Peyton up to all the leads was like torture for her. Instead of starting her out in a crib and trying to get her to sleep there, they started out with her in a bed with me (that proved to be easier last time). She did fall asleep eventually, but it was restless for her. She would only sleep curled up with me with her head resting on my arm. Any time I shifted, she would cry. I was practically falling out of the bed, but she was "comfortable". I could barely feel my arm this morning! Peyton is normally on oxygen at night but I was told if the central apnea was severe enough, they'd put her on a BiPAP machine. At some point during the night, they did have to do that. She SREAMED like I've never heard before. It was absolutely awful. She would also kick and throw her arms every time she screamed. Every so often, about every 30 seconds she'd do this. Then it was just an angry cry, then a cry, then a moan, then it was just the legs/arms kicking. I thought she was finally getting used to it, but after about an hour the nurse came in and took the mask off and put a different on one. She hadn't been sleeping that whole time and they needed to find a better mask for her. She seemed to tolerate it a bit better from the start, so that was better for her. But her sleep was horrible after that. Very restless.

I am assuming since she was put on BiPAP that she will have to be on BiPAP at home now. They do not tell you any results at all as it is like going for any test - you never get the results right then and there. I was told to schedule the follow up visit for within two weeks. When I called this afternoon to set that up, the lady told me the doctor who heads up the sleep center wanted Peyton in Wednesday - two days from now. SO - I can gather from that that her central (neurological) apnea has worsened and that she'll likely wind up on BiPAP at home. Of course, they can't tell you anything over the phone. I'm pretty good at assuming medical stuff sometimes, though! :) After her first study, done May 19th, her follow up was actually not until July 23rd. However, her pediatrician received the study report and put her on oxygen on June 21st before "officially" getting the report from the sleep center. So, that right there tells me that this time around it's more urgent to get in to see the doctor at the sleep center.

I just called the pediatrician's office to let them know what's going on so they can be looking for the report to come through. It will also help us to be able to get a pulse ox monitor for home that is permanent, unlike the one we currently rent.

Poor Peyton looked pretty beat up once I got her home, but she was in good spirits. I came home, got her bathed and ready for the day and sent her off with Ron and Moira to be dropped off at the babysitter's. I went back to bed. Not for long enough, but it sure was nice to sleep!! I'll go to the chiropractor at 5:30 and then pick up Peyton. Hopefully I'll get to bed early tonight as I'm still fairly exhausted!

I'll update the site once we have the report on Wednesday.