Monday, December 31, 2012

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!

Tuesday, December 25, 2012

Merry Christmas!

Merry Christmas to all of you from all of us.  We hope that your holidays are filled with peace, joy, happiness and many blessings.

Friday, December 21, 2012

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.

Thursday, December 20, 2012

A Very Long Overdue Update

I last updated Peyton's CaringBridge page on November 9th!  In this blog construction phase, I have actually gone ahead and put in the most recent couple updates from CaringBridge into this blog so you can easily refer back to those.  As I said in my welcome post, it's going to be a while before this blog is completely populated with the entire contents of that CaringBridge site.

I mentioned last month that things were fairly frustrating with Peyton.  No.  That's probably not the right word.  More like overwhelming and exhausting.  There's been so much happening.  I'm simply exhausted right now.

Peyton has not really returned back to her base line since she was sick and hospitalized back in September.  Forget the 17 day stay in October.  She's just never fully bounced back since September.  She's not lethargic like she was, but she doesn't have a whole lot of pep.  She is increasingly inactive.  Her hip pain is increasing in the past couple weeks.  It's heartbreaking to see her in so much pain and not be able to do something for it.  She's on meds, but they aren't working as well as they need to be.

Peyton has had the worst diaper rash for quite some time now.  It is an angry red at times.  Bleeding a bit at times.  Very painful to look at, so I can't imagine how it must feel to Peyton herself.  Just when we think it's resolving, it flares up again.  I think her skin is just so ultra sensitive to anything that touches her bottom that it's literally tearing her skin up.

At the end of November {the 26th}, Peyton had another "episode" at home where she decided that breathing wasn't absolutely necessary.  She began to turn grey/blue.  She came around fairly quickly {less than a minute}.  We took her to the ER where they did absolutely nothing but eventually send us home.

Peyton had a Cardiology appointment back on December 7th. I have to say that in Peyton's 6.5 year life, this was the very first appointment of hers that I have missed.  I was sick that morning, but she had to go.  Ron took her - all on his own!  Well, with the home nurse, but he did it!  Everything is pretty much status quo in that department.  She will go back in a couple months.  They will do another echocardiogram to see how the mitral regurgitation and heart murmur are doing.  So far, the idea of doing a heart cath is still just an idea.  No plans for one at this time.

A couple weeks ago, Peyton started to get junkier than usual. I was worried as we were heading into that particular weekend that she was about to have to go to the ER.  I contacted the Pulmonary clinic and we were able to start Peyton on a 2 week course of antibiotics to hopefully stave off any major illness.

I mentioned previously that we had a sudden unexpected issue in our home nursing situation.  That was closing in on a month and a half ago.  In a nutshell, we had to fire our home nurse who was doing 40 of the 56 hours a week that Peyton gets.  I won't go into details here but we went through a challenging phase after that.  Scrambling to get nursing coverage.  Not having enough hours to begin with.  That's another blog post in and of itself.  However, God provides.  I wrote about a little Christmas miracle we received over on my personal blog.  You can read that post HERE.  Long story short - we now have 84 hours a week of home nursing care!  I do, however, encourage you to read that post!

During Peyton's last hospital stay {those 17 days in October}, you may recall that I was in constant contact with her Geneticist up at Children's Hospital Boston.  He has been an amazing asset to Peyton's medical team.  He had multiple conversations with Peyton's physicians while she was in the hospital and he has also been in touch with Peyton's Neurologist here at MUSC lately.  In the past month, he has called me himself to discuss various updates.

While we've been going about our business here, the Dr. T. in Boston has been discussing the case with other doctors up there as well as her Neurologist here.  Here is what we know:

* We still have no diagnosis;
* Because of some very specific tests that have been done in the past couple months, we do know that Peyton is severely copper deficient - as in, almost non-existent;
* Peyton's case is exceedingly rare - so rare that she may be "it";
* There is no protocol for treatment because of the rarity of Peyton's condition;
* You don't just "get" copper supplements.  It's not like grabbing some iron pills from the pharmacy;

All of that said, and leaving a whole lot of detail out, in a nutshell, Peyton is likely going to wind up being a research study in and of herself.  We are filling in paperwork to have our family enrolled with The Manton Center for Orphan Disease Research.  Enrolling in this will enable them to place Peyton into a research program.  There is a specific gene that they need to look at.  I won't get into that now.  We all have to be enrolled because they may require samples from the rest of us {including Moira} at some point.  We've sat on this paperwork but I'm working hard to get it finished ASAP.

Dr. T. has been talking with various specialists, including a doctor with NIH {National Institutes of Health} who is apparently one of the world's experts in copper disorders.  This actually came about this week.  Dr. K. is in agreement with Dr. T. in having Peyton tested for this specific gene.  The issues with copper supplementation are namely that it is impossible to come by in the U.S. right now, and we don't know if it is even going to have an effect.  We have to weigh the potential benefits for Peyton with what we are willing to put her through - to what end.  Dr. K. has a research study that is on-going which involves copper deficiencies.  Not what Peyton has specifically - but there is the potential to receive supplements through this program.  Dr. K. is willing to talk with us and we can learn about this program and see if this is something we want to participate in.  If so, it's going to mean a trip to Bethesda, MD.

All that said, Peyton is going to require extensive testing before anything can be done.  She'll definitely be involved in research through Boston.  Whether or not we go to Bethesda has yet to be determined.  Peyton is going to require bloodwork, a lumbar puncture, and a skin biopsy at the very least.  There are specific enzymes that they need to examine.  Copper deficiency can have an effect on multiple organ systems.  We need to find out which ones and how they are being affected before any sort of therapy can begin.  As for therapeutic copper supplementation, Dr. K. feels that it is less likely to have an effect on Peyton given her age - it may be too late for this.  That said, it's something we should still consider. There are just too many unknowns.  Will it work?  What impact will it have on her?  I think there's a whole post just on describing what copper's effect on the body is.  I'll leave that for another time!

Right now we have a lot to consider.  It's looking like a Boston trip will happen in early Spring, perhaps.  There definitely will be one.  The Geneticist {Dr. T.} would like to see her, as will another doctor up there.  If we do participate in the NIH study, there will be a trip to Bethesda.  That would be so easily combined with a road trip to Boston.  The question is will the timing of things required for Boston and Bethesda line up to make that possible.

Please Lord, allow our vehicle to handle the possible multiple trips.  Allow things to line up so that Moira doesn't have to travel with us {which frees up space in our vehicle but, more importantly, frees her from the stress of having to deal with all of the "Peyton" activity that will go on}.  Most importantly, Lord, grant all of these physicians the exact knowledge and wisdom where Peyton is concerned so that they can do the exact right thing for her.  While you're at it, Lord, grant us as her parents the wisdom to know that the decisions we make on Peyton's behalf are exactly the right ones for her.

New Blog: Under Construction!

Family and Friends,

I have been updating you on Peyton's health via a CaringBridge page since 2007, not long before Peyton's first birthday.  It is a wonderful tool.  It really and truly is.  However, as I'm now well into my own personal writing "career" as a blogger, I have learned so much about blogging and the community I find myself a part of.  I have decided that the framework of CaringBridge is not really optimal for what I would like to see for Peyton's site.  I truly realized this when I recently tried to look for an old entry regarding a specific topic.  I couldn't find it because there's no search feature.  We're talking about five years of entries and I can't find the one little piece of informaton I was struggling to find.

I have decided to create this new blog for Peyton's updates going forward!  I am really excited about this.  I am hoping that this platform will prove to be much more useful for me as the writer and you as the reader.  I am really excited because I will be able to add pictures, links, and so on in a much more useful way.  There is so much to be excited about, really.

There are almost 400 entries on Peyton's CaringBridge page.  I have started to copy and paste these into this blog, starting with the oldest first.  It is going to take a while.  I might, at some point, actually start with the newest and work back so that new readers can find out the most current information quickly.

I am not going to lie - this transition is going to be quite an undertaking.  It is going to require a lot of determination and effort on my part.  I hope and pray that you will have patience with me as I start to build and populate this blog.  I promise you that all entries from CaringBridge will eventually wind up posted in this blog so that Peyton's whole story can be viewed in its entirety in one place.

So, welcome to as the new home for Peyton's updates.  I am not getting rid of CaringBridge.  I will point those readers to this blog and my "updates" over there {going forward} will likely be a post directing them to this site.  For now, the blog name is "Prayers For Peyton".  That title may change.  The design and layout may change.  I'm just starting this blog, so please bear with me during "construction"!

Thank you and welcome to Peyton's new site!