Wednesday, May 25, 2011

Uneventful Week

Oh how I love when things are uneventful!!

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

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

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

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

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

Sunday, May 22, 2011

Busy Busy Busy

Peyton has been 5 for a whole week now!  

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

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

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

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

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

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

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

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

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

Saturday, May 14, 2011


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

I love you sweet girl!!!

I wrote a post on my blog about the occasion:

Wednesday, May 11, 2011

Plunging Back Into Reality

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

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

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

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

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

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

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

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

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

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

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

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

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