Happy New Year!

As 2012 draws to a close, I wanted to give you a little update on how Peyton is doing.

The past few weeks have been very difficult for her.  She has been suffering increasingly intense levels of pain with her hip dysplasia.  Her left hip, I can only imagine, is unbearably painful at times.  She is on Neurontin three times a day and Oxycodone for breakthrough pain.  Even with having the dosage of the Neurontin increased within the past week or two, she is still in incredible pain.  Sitting in her wheelchair can be quite painful for her.  When she is laying down, she draws her left leg up towards her body and then across and over to the right.  It's dislocated when it's in that position, yet it seems like that is her position of choice.  There must be some degree of comfort in that position.  However, it makes diaper and clothing changes very difficult.  She has been in her "Rhino brace" {note: if you click on that link, it's the "cruiser" that she is in} far more frequently, including while she is sleeping.  It isn't going to fix her hip dysplasia.  It is meant for hopefully providing some level of comfort for her.  

It is absolutely heartbreaking to see your child in so much pain when you know that you are doing everything you can, but it's not enough.  If only she could tell me what she was going through.  Having a non-verbal child is incredibly challenging as it is, but when the child is sick or in pain, it's worse because they can't tell you exactly what is wrong or what helps or hurts.  I just want to fix this and make her pain go away!

On top of this, for the past few days, Peyton has been having difficulty maintaining her oxygen levels.  She is on a monitor constantly, so we are always aware of what percentage her oxygen level is at.  It should be over 94% but has been in the low 90s and even dipping into the 80s.  To help with that, she has spent the last three or four days on oxygen via nasal canula.  Even at that, she's still having issues.  We have had to bump up the amount of oxygen she gets from about 1.5 liters to 3 liters or so, just to get her where she should be.  We aren't sure why this is happening.  She doesn't appear to be getting sick.

As we wrap up the year, we find ourselves dealing with all of Peyton's ongoing issues as well as increased levels of concern where her pain and oxygenation are concerned.  2012 has been a very difficult year for Peyton.  It feels like the bad has outweighed the good this year, even though I try to maintain a positive outlook as much as I can.  This year has brought some new {and serious} concerns that we will take with us into the coming year.  

If you wouldn't mind offering up some prayers for Peyton, we would greatly appreciate it!

As you know, this blog is under construction, so I am adding posts from CaringBridge here and there - sometimes multiple posts in a day.  Please bear with me if you are receiving email notifications of new posts.  Chances are it is old stuff being added, but I'd hate for you to miss something new, like this post!

I hope you had a wonderful Christmas.  Best wishes to all of you for a Happy New Year!

Moving Forward

I feel like we are picking up a little momentum where Peyton is concerned right now.  I mentioned yesterday that I had spoken with Dr. T. in Genetics in Boston regarding the latest news on that front.  I tackled 3/4 of the paperwork that needs to be done for the Manton Center - that's the research group in Boston.  The other 1/4 is Peyton's portion.  Turns out the rest of our paperwork was fairly straightforward.  Peyton's, of course, needs the more detailed medical history and requires more effort than I can muster up right now.  I have been sick for the past few days.  A trip to urgent care yesterday and a Z Pak should do the trick.  Then I will finally be able to get this done and on its way up to Boston.  The other 3 packets of information are already en route.

This evening I received a call from Peyton's Neurologist {Dr. K.} here in Charleston.  He was calling to discuss Peyton's case with me in light of his recent conversations with Dr. T. in Boston.  I think that's his new best friend now.  If ever I could be a fly on the wall in the middle of a conversation - it would be the one between the two of them.  I think it would be fascinating.

Dr. K. is aware of the possibility for Peyton to become involved in this on-going research study at NIH in Bethesda, MD.  He seems to be on board with this plan.  Dr. T. asked us to consider it and contact the other Dr. K. at NIH regarding the study if we were interested.  Dr. T. could go either way. Dr. K. here at MUSC actually knows Dr. K. at NIH.  He seemed quite interested in this study to see where it might lead for Peyton.  I think we all agree that it falls into the category of "no stone left unturned" or "nothing ventured, nothing gained".

The next step right now is the lumbar puncture that I had previously mentioned.  Dr. K. at MUSC is going to do that.  He wants us to think about it, but really, it is the next step we need to do.  It's necessary for Dr. T. in Boston to have results of a lumbar puncture to help establish a base line prior to any form of copper supplementation.  The LP is probably going to happen around the second week of January.

While I had him on the phone, I asked Dr. K. about increasing Peyton's Neurontin.  She is on this for pain for her hip and shoulder.  The generic name for Neurontin is Gabapentin.  For whatever reason, every time I open the fridge to get a dose or Peyton, I keep calling it Yo Gabba Gabba-pentin.  If you have a small child, you'll possibly find that mildly amusing.  Gotta do something to keep things interesting, right?  I digress.  Dr. K. is on board with an increase in her dose {it's already 3x/day, but the amount given with each dose will increase}.  We've noticed Peyton's pain level in the past week or two seems to be on the rise and we're having to give her Oxycodone between doses of Neurontin.

There is the possibility that Peyton will need a hip x-ray to check the status of her hip dysplasia.  He suggested a possible sonogram as well.  He also suggested that perhaps botox might be considered, but I don't know what my wrinkles have to do with her hip pain! I kid.  Like I said, I have to do something to keep things interesting.  We'll see how the increased meds help and go from there.

That's about it for now.  I was excited to have another phone call from another doctor this week.  Things are moving forward.

Not Much News

Just a quick update on Peyton.  She is still in the hospital.  She is still doing alright.  While she is in, she is having a 24 hour urine test which is something that the geneticist here wanted done for some genetics testing.  It's not related to why she came into the hospital, but this is clearly not something we could do at home, so I thought I would ask about getting that taken care of as long as we are here.  That alone will keep us here til late this afternoon.  However, I'm not sure if she'll go home today or not.

Peyton has been pretty sleepy since she's been in but she's also been pretty irritable during the times when she's awake.  She really isn't ever like this - not even in the hospital.  Now, with the hip pain she's displayed extreme irritability, but she's getting her meds for that.  I believe that this is something different.

We still don't know if what happened was a respiratory or neurological problem.  I could see it being either.

There really isn't a whole lot of information.  Sorry!  We're still here - just hanging out in the hospital, unable to be working on our move until we leave!  Crazy.

Things Are OK

I realize {after a few people questioned me} that it has been a long, long time since there was an update here!  I just wanted to take a brief moment to update you.

In a nutshell, there's really nothing noteworthy to report.  After Peyton's hospitalization in March, she had some continuing issues with a couple little abscesses in the area.  I finally got one to burst and drain and it has greatly improved.

Peyton continues to have a lot of respiratory issues.  She was sick over Christmas and is still not quite herself yet.  Nothing worth going to the hospital over, but definitely worth calling the doctors a couple times.  She'll run a fever for a couple days...then nothing.  She'll be exceptionally junky and sound horrible for a while.  Well, she still sounds bad most of the time, but I think it's improved a little.

Overall, Peyton seems to be holding her own, although from an orthopedic point of view, I might say that she's losing some ground.  She is constantly dislocating her shoulders {particularly the right one} but also her knees and her jaw!!  It is becoming increasingly difficult to dress/undress Peyton because of her shoulder.  It seems like she is unable to do things that she was doing a few months ago, but I don't know...it's hard to say if that's permanent or just because she's been feeling so poorly since the holidays.

Schooling continues to be a "joy".  She's on homebound, which means the service providers come to her.  Well, they didn't do her IEP until the school year started, when it should have been in place for her to start on DAY 1 of the school year.  She started 6 WEEKS into the school year!!!  And even at that, she didn't have a special ed teacher!  They already cut her back from 4 days a week {an hour each day} last year to 2 days, but to have no one just isn't acceptable.  She finally got a teacher and then when Peyton went into the hospital in October, we lost her and we were supposed to have another.  Peyton took a couple weeks after she got home to recover, and in that time, the "new" teacher decided it wasn't for her, even though she never saw Peyton.  We are still without a special ed teacher.  I am thoroughly unimpressed with the school's ability to follower Peyton's IEP this year.  Disgusted is more like it, but I haven't said much simply because Peyton has had a hard time lately.  The school technically owes her all that missed time, although they would never acknowledge it unless we brought it up.  I did and was told we could meet to discuss that.  Well, no...THEY have been unable to provide a service.  THEY should be working on the solution and doing everything THEY can to make sure she doesn't fall behind {too late!}.  Ok, I could go on for a while about how unimpressed I am with her school this year but I won't.

As for nursing, we still get only 40 hours a week, which simply isn't enough.  However, the government seems to think any more hours would be unnecessary.  It's a struggle to determine the shifts.  I hate it, actually.  We have two nurses and this is the only job for both of them.  I want to make everyone happy.  It's so hard.   I struggle at times to put Peyton's needs first, so I tend to schedule more around the nurses which isn't right either.  It's just not easy to work with 40 hours.  I tried to go 3 days with no nurse a couple weeks ago so that I could make things work out better for one of our nurses {i.e. give her more hours on days she wanted} and it nearly did me in.  I am constantly exhausted.  That has never changed.  I can't seem to get past this exhaustion.  Anyway, I decided for myself that it isn't fair to me to do that.  Sigh.  The only way to get more hours is for Peyton to wind up sick enough to be hospitalized...but with something that would allow her to get more hours when she gets out.  And that would only last a couple weeks anyway.  We got bumped up to 56 hours after her October hospitalization for 2 weeks.  It was so helpful, even if it was still significantly less than the 80 hours we had been getting.  It's a full time 24/7 job {I hesitate to call it that since Peyton is my child}.  I can't go on forever like this!

Anyway, that's it in a nutshell.  I haven't been writing here, but I have been blogging...a LOT over at The Fontenot Four which is my personal blog.  It started like a "family" blog, but it's really just my space to write whatever I'm feeling inclined to write about.  Almost entirely positive stuff with no focus on the negative side of life.  If you haven't been to my blog, I encourage you to have a visit!