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 www.peytonfontenot.blogspot.com 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!

Friday, November 9, 2012

Update

When I last wrote we were concerned that Peyton would have to go back in the hospital for albumin infusions and a blood transfusion.  This week, on Tuesday, Peyton had the bloodwork done that the cardiologist ordered last week.  Long story short, we do NOT have to bring her into the hospital for these things.  Her numbers seemed to have bounced back, although I am a little skeptical of one of the numbers.  If it's right - and not a fluke - then that's great!  That's not to say her numbers are perfect.  Just good enough to avoid this possible next step.

We also saw the neurologist.  The pending test results from when Peyton was in the hospital really didn't show a lot.  There's not a whole lot to report on this visit.  The doctor is anxious to help us, but we're kind of at a point, overall, where we aren't sure what the next step is at all.

A couple days before all of this, on November 4th, Peyton began having some serious "diaper issues" which cause our home nurse to be concerned that Peyton might have c diff.  I think I wrote about that last time.  We had to get a stool sample kit from the pediatrician's office on Monday.  I only JUST got the results this afternoon - and it took a lot of effort on my part to get them.  Sigh.  The end result is that she does NOT have c diff or any of the other bacteria that that kit tested for.  That is great.  And I'll take that news.  But she's had really nasty diarrhea for at least a week now with no real signs of letting up anytime soon.  I did not really get anywhere with the doctor's office asking what we should do.  He suggested bulking up her diet.  She's tube fed.  I can't give her rice cereal.  I am not certain where that came from, but I can't do that.  I may need to try another probiotic.  I was a little frustrated after that whole ordeal chasing down results and whatnot, so late this afternoon (like 4:30 pm on a Friday late) I emailed Peyton's gastroenterologist through the hospital system.  I certainly wasn't expecting a response, but I've felt since we first went through the pediatrician's office a week ago that we probably should have gone through the GI clinic all along.  We just happened to run into the GI doc in the lab at MUSC this past Monday when Peyton was having that bloodwork done, so I did mention to him what was going on.  So the content of my email today wasn't going to be a surprise to him.  NINE minutes after sending that email, I had a response from his nurse saying he'd like to see her on Tuesday in clinic.  Nine minutes.  NINE.  Can I just reiterate the frustrating day - no, two days - I had trying to get results out of the pediatrician's office??  And a specialist at the hospital read and had his nurse respond to my late Friday afternoon email within NINE MINUTES.  Seriously!  Can you say "impressive"??  Anyway, so we'll just live with this til Tuesday.  Hopefully by then things are improving, but as I said, things are not heading that way so far.

On the whole, this has been a frustrating week.  First just dealing with Peyton's health issues of late.  Fortunately for me we've had nursing and they get to handle some of those nasty diapers.  However, at 1am on Wednesday, I was still up and I walked into Peyton's room and I could smell it and I knew we were in trouble.  I had to wake Ron up and she needed to be bathed, her bed stripped, laundry started, things sanitized, bed remade, Peyton redressed, and put back to bed.  THEN I had to clean the tub.  I wound up cleaning the bathroom.  At about 2am.  Does that not sound like fun??  I hadn't yet been to bed and by that time, I was wide awake.  I had other issues going on which kept me awake.  At about 5am or so I pulled up my online bible study on YouVersion on my brand new iPhone (woohoo!!) and "began" my day.  Peyton woke up in the morning as usual but when the nurse left at 4:30 Thursday, I put her down for a nap.  She woke up at 3am Friday morning.  Because I was up all night the night before, I had slept for 5 hours while the nurse was here, and then for another couple after Ron got home from work.  So, at 3am I was, of course, still up.  I changed her and she did actually go back to sleep pretty quickly.

So, we've been dealing with a lot with Peyton which has been highly stressful.  Ron and I had a long discussion about a lot of things Wednesday night after we got home from our First Wednesday service at church.  The bulk of it was involving another issue which was mainly responsible after the 1am diaper explosion for me to not get back to sleep.

I am not going to go into detail here.  If you want to talk to me personally in some other setting (phone, email, in person), I can share some details, but it isn't appropriate here at this time.  Suffice it to say, we were suddenly and unexpectedly in a position of having to remove our 40 hour a week home nurse from Peyton's case.  Please pray that we are able to obtain a new - and very good - nurse quickly.  I know the agency is working hard at trying to meet our needs in light of the situation, which I am very grateful for.

Aside from all that, we're just moving along.  Going through the motions of life right now.  I think it's pretty safe at this point to say that Ron and I are fairly tapped out physically and emotionally.  Peyton's 17 day hospitalization and all that involved really took its toll.  We have been so grateful for the help we've received from our church family who had set us up with meals for all of last week.  I am extremely grateful to my next door neighbor who brought her little baby and 4 year old over today and just spent the day (all day!) with me.  Just because I had no nurse and she wanted to help in some way.  Her husband even brought us lunch.  How awesome is that?  Anyway, I just have to believe that out of all of this, something good is going to happen.  There are definitely blessings amidst the struggles.  I just pray for the struggles to ease so that we can rest a little.  I'm not any good to anyone if I continue like this.

I'll keep you updated.  Peyton has a few appointments next week.  Thanks so much for all your prayers and continued support!  

Sunday, November 4, 2012

An Outpatient Update

I have been meaning to write this post for the past few days or so.  I've been in a "writing funk" and haven't blogged much either.  I'm just not feeling it.  That said, I do need to update you on Peyton's current situation.

Last Tuesday (10/30) Peyton had Cardiology and Pulmonology appointments.  It was a long day but glad we went.  It is so difficult to get Peyton out of the house to go to an appointment.  If you were to tell me right now we had to go somewhere with her, I couldn't be ready to leave for at least 30 minutes.  At least.

Anyway...

Cardiology.  She had her last echocardiogram while she was in the hospital last month, so she didn't need another.  Some of her odd symptoms appeared like they could be cardiac in nature, but after looking at the echo, it's not likely.  For example, the edema (swelling she was having in her face) might be a sign of right ventricular failure, but her echo did NOT show that.  She does not have right ventricular failure.  So that's a good thing.  The measurements they got did show that the left side of her heart is ever so slightly enlarged - like one point outside of the normal range.  Not terrible.  Her mitral regurgitation and heart murmur have been described as moderate.  I don't think those have gotten worse.

We first discussed everything with the fellow. Then he came back in with the regular cardiologist and a 4th year med student.  We talked with them for quite a while.  He definitely seems very concerned about Peyton's overall condition.  While the main issues she's been having the past month or two don't appear to be cardiac in nature, he is definitely concerned enough to want to do extra bloodwork on her.  He is particularly concerned about her albumin and hemoglobin levels.  They are low.  She's pretty anemic.  For some reason, Peyton has never had a blood transfusion, although we thought she was going to wind up having one last month, if you remember.

After a lot of discussion, he ordered labwork which we are going to have done on Tuesday this week when we bring Peyton in for her Neurology appointment.  We'll do the labwork first.  Once it's done, we'll call Cardiology and let them know it's done so they can be looking out for any preliminary results.  His hope is that he can get some results and then talk to the neurologist while we are still there.

We still have some outstanding tests from when Peyton was in the hospital.  We are hoping that we will be able to get some of the results when we see the neurologist.  The geneticists in Boston wants Peyton to have a shunt tap to get some CS fluid.  However, the neurologist here is hoping he can just do a lumbar puncture.  We're going to try to set that up.

Cardiology wants to do a heart cath, so we may try to coordinate that with the lumbar puncture.  The heart cath is going to require an in-patient stay, so that's out there.

As for the bloodwork on Tuesday, the cardiologist wants to see how the numbers compare to her last bloodwork done while Peyton was in the hospital.  He is wanting to bring her into the hospital as an in-patient - hopefully for a short stay - to do a blood transfusion and maybe an infusion of albumin.  I'm not sure if he has other things in mind as well, but he said he would like her brought in for a "tune up".  Her levels are really low right now and she's just not herself.  It's actually been pretty sad to see.  It is our hope that these treatments can help to bring her around to something of her former self.

To help ease some of the load on her heart, and possibly some of the edema (which actually hasn't been bad lately), the cardiologist has started her on Lasix. You can find more on that drug here - http://en.wikipedia.org/wiki/Furosemide.  In short - it's a diuretic.  If we can ease the load on her heart, then the thought is that it may in some way help with the regurgitation.  Go here to find out more about mitral regurgitation - http://en.wikipedia.org/wiki/Mitral_regurgitation.

For the past 5 days, we've been dealing with a Peyton who is not herself.  She doesn't look well.  I emailed the Cardiologist today to give him a heads up as to what has been going on with her lately in case he wants to expedite the treatments he has in mind.  She is lethargic (she's been sleeping since before 4pm and it's 7:50pm now), she's irritable, she has had diarrhea for 4 or 5 days, and so on.  The home nurse today is concerned that she has c diff.  You can read up on that here - http://en.wikipedia.org/wiki/C_diff.

I am so tired right now. Every time I feel like I've reached a new level of exhaustion, something changes and I reach a new level...again.  Today began with the suspicion of c diff.  I already have had increasing levels of concern about Peyton but once that happened, I became even more concerned.  I wasn't sure if this would entail a trip to the ER or to the walk in clinic or what we would need to do.  The nurse called the doctor's office (they are open 365 days with weekends being "walk in" from 9:30-noon) but they didn't have their phones taken off the answering service.  We didn't get through til almost 10am and then the nurse left a message with the nurse at the office to see what we were to do.  Finally she had to call them back at 10:50 to see what the answer was.  Ron, Moira and I usually go to the 9:30 service at church on Sunday, so we were unable to go.  At 10:50, we were going to have to be leaving to catch the 11:15 service.  I wasn't sure if we'd get to that either.  The answer wound up being that we had to go get a probiotic for her.  We left, worried about Peyton.  By the time the service began, I was really teary.  Fortunately, I could hide that behind the powerful emotion of one of our pastor's spoken word dialogue and a very powerful video about one of our church's family's adoption journey and new ministry as this was Orphan Sunday.  Normally I am into the music and worship and all that, but today I just wanted to sit and cry.

I'm just concerned and I'm not sure what is going to happen in the coming days or so.  I will keep you posted.

There are many people at church who have been providing meals for our family since Peyton came home.  You can't even imagine how grateful we have been for your support.  We've had some very delicious meals thanks to you ladies!  Thank you so much!!

I will keep you posted on how this week goes.

Thursday, October 25, 2012

Going Home!

In a VERY quick update, Peyton is going home tonight!!!  I will update more later when I have a moment.  It's exciting, overwhelming, and it has me a bit nervous and emotional.

Wednesday, October 24, 2012

Weary and Ready to Be Home

I was SO hoping that I would be reporting that we were home finally.  But, alas, we are not home.  Still at the hospital.  It's Wednesday night.  We are wrapping up the 16th day in the hospital.

Clinically speaking, Peyton is ready to go home, so that's great.  Now, that said, she is having some issues holding her oxygen level up where it should be, so that's a concern.  This may be her new normal though.  On the other side of things, the doctors are having to meet as a team (which they seem to regularly), but they are having to coordinate with other specialists in-house as well as talking with the geneticist in Boston on certain issues. 

I did not speak to the doctor myself this evening, but the nurse said that they want to be sure I know CPR and that we have everything set up to be at home.  There needs to be a plan in place for how to deal with these "apnea events" (just a polite way to say that she stops breathing).  I kind of equate them to having seizures.  No...I'm not saying she's HAVING seizures.  I'm drawing a comparison here.  When she had the first major seizures, we went by ambulance to the ER.  When she stopped breathing at home the first time (a minute or so), we went by ambulance to the ER.  She has had a couple events in the hospital, so we were where we needed to be.  When she continued to have seizures at home, we had to monitor how long they were and what her mental status was after the seizure ended.  Only once have we had to use the emergency meds for seizures that are too long.  So I'm wondering - when she stops breathing at home, at what point do we now call 911?  If she comes around quickly do we just assess her and if she's "normal", stay home?  Or do we have to book it to the ER every time?  How are we supposed to handle these events?  And like seizures, there's no telling when (or even IF) there will be another event.  Do we need an apnea monitor at home now?  We have a pulse ox monitor, but it doesn't measure her respiration rate.  Do we need to keep her on the pulse ox all the time now?  These are just some of the questions we have that we need answers to before we leave here.

So, as you can see, while we may be physically ready to be out of here, it isn't as simple as that.

Say a few prayers please.  Mostly for her that she can get home, but also for me.  I'm pretty weary.  I'm hanging in because of the hope that we'll soon be home, but I had hoped it might be today and, while I totally appreciate where we are in the process right now, the fact that we did not get to leave did something to me.

And I just want to thank the people who have been so good to us.  I had some people from church come up to visit (separate visits) and a couple others as well.  I really appreciate their thoughtfulness - from the visit itself to the books, snacks and so on that they brought.  And to those who have helped and who have offered help in the outside world, I am so thankful for you as well!  I really truly appreciate it.  It all means more than you know.  I'm so grateful to you!

Tuesday, October 23, 2012

Nothing New

I wanted to write a quick update here just to say that there is nothing new to report. I had a couple comments from people because they hadn't seen one in a couple days. Honestly, we are just in a holding pattern while we wait on lab results from tests done on the weekend. We are also waiting on the neurologist here to confer with the geneticist I'm Boston. Hopefully we hear something soon. I think Peyton is pretty close to being able to go home otherwise.

Saturday, October 20, 2012

Holding Pattern

Yesterday was a relatively quiet day. Peyton did not have a good night's sleep at all on Thursday night. She woke up a little cranky, but if I'm being honest, I truly felt like she was a little better and that perhaps we were heading in the right direction.  

Peyton, having not had the best night's sleep, fell asleep around 1:30pm. I thought that was fine - she probably needed a nap after the night's sleep she had. She basically fell asleep by the time the respiratory therapist was finished with her. When the RT came back 3 or so hours later, Peyton was still asleep. Her treatments involve lifting her up, putting a vest on her, hooking her up to a machine that inflates the vest and it vibrates at a pretty good force in order to help loosen up any junk in her lungs. She also gets a number of nebulizer treatments as well as inhalers. She slept right through that, perhaps only opening her eyes briefly once or twice. The next RT came in around 9:00pm or so. Same scenario. She'd pretty much been asleep since 1:30pm. But I figured she'd wake up completely at this point because she was still on the nasal canula for oxygen and she needed to be put on her bipap mask. Her canula is taped to her cheeks. That would definitely wake her up! Well, it did...briefly. And by the time I had the mask on her and started up the machine, she was pretty well out of it again. 

Sometime after midnight, while she was on bipap, her oxygen levels dropped and kept dropping to about 80-81%. I watched for a moment and the nurse came in since she had seen that on the monitors. I hooked up supplemental oxygen to her bipap machine. We shouldn't normally have to do this because the bipap keeps her levels where they should be...most of the time. I got the oxygen going at 1 liter and the same exact thing happened again. I bumped it up to 2 liters of oxygen. She did well on that amount. In the meantime, her heart rate was up in the 140s and even up to around 150. Even when she was sound asleep, it was in the mid 120s. Mid 120s is usually her normal "awake" rate when she's well. Because of all of this, the nurse called the RT to come in and take a look and she paged the doctor. All of this was going on between 1 and 2 am this morning. I think the doctor was in sometime shortly after 2. Of course, she was sleeping soundly and seemingly peacefully. There wasn't an explanation. 

Speaking of no explanations.... We still have no idea what is going on with Peyton. This is our 12th day in the hospital and there's no answers. Let me reiterate that this is not the fault of the doctors or hospital. They are doing everything they can. Trust me on that! I find no fault in anything they've done. Earlier in the week, I decided to email Peyton's geneticist in Boston to let him know what was going on. Not because I'm doubting anyone's abilities here but because I know that we're all sitting here scratching our heads. I thought maybe, just maybe he might have some ideas. As it happens, he is at a conference on metabolic diseases. He thought it interesting given everything going on with Peyton right now. We exchanged a couple emails and he then sent me one which I passed on to Peyton's team here. It had instructions to call him while he's at this conference. The doctors rounded this morning and they have apparently been in touch with him during the night via email and phone. He has some specific tests that he would like run. Per his request, they checked her ammonia levels in her blood. It came back as 80, which is a bit high. He was looking for something over 100 I guess. That said, they were going to get in touch with him about that since it was close. They may do a 24 hour urine test (she'd have to be catheterized for that). I think he wants her to begin IV copper supplementation, but getting that is not as simple as getting iron supplements, so they have to talk to pharmacy here. There's also some sort of steroid that he was talking about putting her on. Since there are a variety of tests he also wants her to have, the doctors here want to find out if those all need to be done before starting this steroid. Starting the steroid isn't the problem...it may just need to wait until after these tests. The bigger issue is the copper. We'll see what happens. 

Right now we're just in a holding pattern. Peyton's definitely more alert but her heart rate is higher than normal and she's not back to her base line. She is a mystery and she is leaving everyone scratching their heads. Keep on praying for wisdom and guidance for her doctors. This is as frustrating for them as it is for us. I wrote a post on my blog in the wee hours of the morning this morning. It's a little about Peyton and about community. You can read that here:


And also just a little side note, I wanted to share that I had written a blog post last month as a "Compassion Blogger" - that is, I will from time to time write blog posts to promote the efforts of Compassion International in sponsoring children around the world, lifting them out of poverty in Jesus' name. September was "Blog Month", which means they utilized Compassion bloggers to the extreme to push to get 3,108 children sponsored in the month of September. They got 3,159 sponsored!! I wrote posts during the month towards this effort. One of my posts was selected as a "Best of Blog Month" post and was featured on their blog. You can read that here:


So, we're just hanging tight here and we'll wait to hear what all the doctors come up with. I'll keep you posted.


Thursday, October 18, 2012

No Transfusions!

I am happy to report today that Peyton did NOT require a blood transfusion!  The number that came back from the bloodwork this morning was the exact lowest number possible to have without requiring one.  So, it's close...but for now, we don't have to deal with this.

Peyton is pretty junky today but it doesn't seem to be settling in her lungs.  It's mostly upper airway.  She's a little cranky, so I'll take that.  She's still fairly sleepy though.  The puffiness in her face has pretty much gone away, so that's good.

I have been in touch with Peyton's geneticist in Boston.  Since he has taken great interest in her case, and since we have no idea what is going on with her these past 10 days, I contacted him to give him an update.  As it happens, he is at a conference on metabolic diseases, which is fortunate for us.  He emailed me the other night and he called me this morning.  I've now sent another email from him over to the team here so that they can see what his thoughts are.  He would also like for one of her doctors to contact him, so we'll see what comes of this.

Not much else is going on, so I guess that's a good thing!  I will, of course, be keeping you updated as things progress.

Wednesday, October 17, 2012

A Little Better?

I *think* that there is a possibility that today is a better day!  I think.

Peyton did well overnight.  She woke up a little earlier than she has been the past several days and she started fussing with her bipap mask on.  I realized that if she's fussing now with the mask, she must be starting to feel better.  She's been having to wear it pretty much 24 hours a day for the past several days and hasn't fussed one bit.  You can bet that means that she doesn't feel well.  She fussed a little more while she was being cleaned up and having her bedding changed.  Again, I take all that as a good sign.

We are hoping that today they will take her off another antibiotic, which will, at this point, leave her on only one of the original four antibiotics.  It's been 7 days or so of antibiotics, and since they haven't found anything, they've been peeling them away a little at a time to see how she does.

She had an EEG the other day and an MRI yesterday.  As expected, all of that was normal.

The one thing that's come up that is a little concerning is that she is getting more anemic.  She is usually a little anemic and she takes iron supplements twice a day.  However, her numbers here lately have been dropping a bit.  They are going to give her til the morning when they check her blood again.  If she drops to a certain number, then she will wind up having to have a blood transfusion.  She's never had one before, so that's a little concerning.  And, no, I cannot donate for her.  There's a whole process that would take days to get through.  But I will say that this is a great opportunity to learn the importance of donating blood.  It would be a great thing to consider!  Next time you hear about a blood drive, would you consider taking the opportunity to give blood?   I know I will!

That's about all there is for now.  I will keep you updated.

Tuesday, October 16, 2012

Still a Mystery

Things did not improve much over the course of yesterday.  I think if she had been left alone, Peyton would have slept all day.  Of course, she wasn't able to do that.

Peyton's face and feet seemed pretty puffy, which is always a concern, but particularly with cardiac issues.  They ordered an echocardiogram and apparently, based on what I heard this morning, that seems to be ok.  

Dermatology came in and checked her rash and bruising.  No answers there.

At one point, the doctors had been called back because Peyton just wasn't perking up and the swelling seemed to be worse.  Between that and some other issues, they decided to call the PICU doctor to come down and take a look at her.  She felt that whatever is going on with her is not respiratory an is likely neurological (heard that before).  She ordered an EEG.  That was done last night.  I haven't heard any results from that, but with the way things are going, I expect to find that it was normal.

I just have to take a minute to thank the people who have helped us out, particularly with Moira over the past few days.  It really means a lot!  Thank you!!

I have heard that Peyton may be going for an MRI today.  I'm not entirely sure.  I will, of course, be keeping you updated.

Monday, October 15, 2012

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.

Sunday, October 14, 2012

Dislocated

This morning started out with Peyton preparing to go up to the PICU to have her endoscopy that the GI doctor wanted done.  {They sometimes do procedures up there.}  We went up a bit after 10am or so.  The doctor was ready, as was everyone else, but there were technical difficulties with the endoscopy equipment.  Technology is great, but sometimes....

The procedure finally got underway around 11:30 or so.  I waited in the family lounge waiting area just outside the PICU.  When it was over, the doctor came out to get me and we went back to Peyton's bed, which was diagonally across from where she'd been on Wednesday/Thursday last week.  She was also directly across from the non-stop lullaby.  {If you follow me on twitter or facebook, you may have seen me post on Thursday that I'd been listening to Brahms Lullaby for about 15 hours straight at one point.}  Wouldn't you know it, the lullaby was on a continuous loop again.  Joking aside, it sounds like that child {not sure how old - closer to baby age than Peyton's age I think is having a pretty major surgery in the morning, so if you could say a prayer for her, I'm sure the family would appreciate it.

The scope went well and there was nothing major discovered, which is good.  It does seem that perhaps the "j" tube may be a little large and she will need to have the whole g-j tube changed out for something a little smaller and less likely to cause this irritation.

While she was recovering from the sedation up in the PICU, one of the residents came by and he said the radiologist had read the xrays from yesterday and she noticed that one of her shoulders was "strikingly" dislocated and she wondered if we were aware.  I explained to him that yes, Peyton's shoulders dislocate ALL the time.  I explained how we rotate her arm and get it back in or she manages on her own somehow.  She's just that loose.  After we were back up in Peyton's room, ortho came down to take a look.  Sure enough, at that moment, both shoulders were dislocated.  The doctor manipulated her shoulder back into place using the usual method of traction/pulling/rotating.  By the time he left the room, I think he re-set her shoulders 4 times.  They popped out that quickly.  He wanted xray to come and get images to be sure they were still in place.  Xray came...but I told them I'm pretty sure I can tell you right now without xray that both shoulders were right then dislocated.  They just dislocate THAT easily.

Peyton has been wearing her bipap day and night since Saturday's apneic event (that's what they're calling her "stopped breathing" event).  There's a possibility that they'll try to wean her off of it a bit starting Monday.  Normally she only wears it at night when she's asleep.  Right now it's day/night regardless of whether she's asleep or awake.  I can't imagine wearing it while awake!  Since it gives a breath if she does not breathe, that's why she's having to wear it.

I honestly can't think of what else is going on right now.  We're still in the PICU.  Moira's been home for the past few days.  I haven't seen her since Friday.  It's been a bit difficult for her this time around.  We still don't have any answers for anything.

Will keep you posted.

Saturday, October 13, 2012

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.

Remember Last Month?

Today was going along just fine, although Peyton was pretty irritable and her heart rate was a bit higher.  The doctors made their rounds and we were sharing all our concerns about her.  They left the room.  The nurse came along.  He was in the doorway at the cart {they have carts in the hall with their computers and some meds/supplies are also locked in there}.  I lifted Peyton up into a sitting position so I could make adjustments so she'd be more comfortable.  Almost immediately she kind of threw her head back and was staring off into nowhere.  Then things seemed all to familiar.  Remember when she stopped breathing last month for about a minute??  It was happening AGAIN.  I called to the nurse who called down to the doctor who was still in the hall but up a bit.  Everyone came in.  They didn't call a MET but someone asked if they should.  The episode lasted about 30 seconds this time.  I was able to grab for the suction while the nurse got her oxygen going.  The doctor was just seconds behind coming into the room, but she was pretty well through it when she came in.  Her heart rate was elevated, although it has been all day.

More discussions ensued about what's going on with Peyton.  They still don't know.  More discussions ensued about what to do with Peyton.  She had been taken off one of four antibiotics that she's on, but they began discussing putting her back on that.  They were going to stop a second one, and the orders to discontinue had actually been put in.  They cancelled those orders and have continued.  She's on 3 antibiotics that I know of for sure.  Not sure about the one that was d/c'd if that will come back or not.

I described what happened to the doctor and stated it was exactly like the episode last month, only not as long.  It is possible, as I thought last month, that it could be seizure-related.  They are going to talk to neurology and get their take on it.  She may need an EEG.

The pulmonary doctor was consulted after this and this was him finding out that she was even in the hospital.  He was not impressed.  I don't blame him.  Actually, as far as I was concerned, he had been contacted because I heard someone say that they were going to - either in the ER on Tuesday or in her room Tuesday night or Wednesday morning before she had the episode that sent her to the PICU.  Anyway, he's on the case now and his suggestion was for her to wear her bipap 24 hours a day to help keep her airway open in the event this happens again.

Because of what happened, it was decided that Peyton would be moved to the PICU stepdown unit.  So we are not where she was on Wednesday {thank God}, but she is being more closely observed here.  Not that she wasn't before...but there's more constant monitoring in the stepdown unit.  She's on the full monitor rather than just the pulse ox monitor which only measures oxygen and heart rate.

Nothing had been mentioned yet about going home, but now that we're over here, it's definitely going to mean a longer stay.  I don't know what is going on with Peyton, but I believe there are multiple issues.  If anyone from the show "Mystery Diagnosis" wants to weigh in, I'd be more than happy for them to!!

As always, prayers are appreciated!  Please keep Moira in your prayers too.  This stay is really weighing on her.  She was unable to go somewhere today because of Peyton being in the hospital so she was upset about that.  She's worried about Peyton.  Seeing Peyton in the PICU, even if only briefly, was scary for her.  It was scary for us!!  

I'll keep you posted!

Friday, October 12, 2012

Back In A Room

I apologize for not updating yesterday.  Wednesday was pretty scary to say the least.  It was also extremely exhausting.  Peyton was in the PICU for under 24 hours, but it was highly stressful, exhausting, etc.  While I could use my laptop at her bedside, I was honestly too wiped out to do much of anything.

Peyton was released from the PICU early afternoon yesterday, at which point she was put into a regular room, just down from the one she started out in on Tuesday night.  She had no major crises while in the PICU (Thank God!).  While in the PICU she had to have her shunt tapped (think spinal tap but on her shunt in her head).  You can click through this article to read up on what that's all about and you can see pictures as well: http://emedicine.medscape.com/article/81058-overview.

The doctors were just by a few moments ago.  So many tests have been run on Peyton and, believe it or not, we still have no answers.  They have NO idea what is going on.  The odd bruising that happened right before going to the PICU may be a reaction to one of the four antibiotics she has been on (it's a new one to her).  We're not 100% sure about that, but it's a possibility.  There are several things going on and there's no answer for anything.

Would I like an answer? YES - but so would the doctors.  They're just as anxious to know as I am.  They are sorry we're here and that we've gone through so much.  I am very appreciative of all they are doing and I get that they don't have any real answers but I also get that they're doing all they can to figure it out.

Peyton is doing SO much better than Wednesday.  SO much better.  The difference is immediately obvious to anyone who saw her then and sees her now.  We're not back at 100% yet, but we're getting there.  She's off 1 of the 4 antibiotics and may come of another since it appears it may be the source of the latest weird bruising that's happening.

No indication has been given as to when we'll get home, but it won't be in the next couple days.

We appreciate and thank you for your prayers!

Wednesday, October 10, 2012

A Scary, Eventful Day

Yes, it has been quite the eventful day - and not in a good way.  I will start by saying that we still have no answers as to what is going on.

This morning it was just more of what I described yesterday.  Within a couple hours, she was having problems holding her oxygen level and needed oxygen.  It was still a little low and her heart rate was also high.  No fever to start the day.  Within a few hours, she began developing weird bruises just out of nowhere.  All the while, she was extremely lethargic.

I called for the nurse.  It wasn't her own who came in, but that nurse got Peyton's nurse.  She called the doctor.  The doctor came and he left and came back.  Then they did a MET call (think emergency response type of call minus crash carts and other scary things).  Soon we had 15-20 nurses, doctors, respiratory therapists descend onto her room and at any point in time there were 4-6 people immediately at her bedside.  Respiratory began doing treatments.  They had an ambu-bag ready.  She wasn't ventilating well.  Her coloring was poor.  Her respiratory status was vastly different from where it was not long before.

It wasn't scary in the "she stopped breathing" sense that we had a few weeks back.  But it was pretty darned scary having that many people come in all at once and take over the room.  I was standing towards the back and there was a nurse in the room who had just come in to talk with me (she handles pain management and palliative stuff). She just happened to be in the room when it all happened, so she was an incredible support during everything.  One doctor came in and asked questions that I couldn't even answer because I was too emotional.  She answered for me.  

Long story short, after a debate between sending her to the PICU vs the PICU step down unit, the PICU won out and we were sent there.  It's an open unit with curtains between beds.  It's loud.  Lots of activity.  Lots of beeping equipment.  Alarms going off.  Just busy.  Chairs but nowhere to sleep in here.  No food or drinks allowed.

Prior to the events I described, she had been sent for a stat shunt series.  She has a shunt because of hydrocephalus.  There was some concern over everything being shunt related.  The series is basically a set of regular xrays to look at the shunt and it's tubing that goes into her abdomen.  It was shortly after returning to the room that everything happened.

A stat head CT was also ordered.  She had that a while after being brought up to the PICU.  It was well-timed as Ron and Moira had arrived and he had food for me.  I wasn't allowed to go for the CT so I sat with them and waited.  Everything looked ok on all that imaging, but they ordered for her shunt to be tapped.  I guess you could say it' like a spinal tap but they tap into her shunt in her head.  They are able to check flow and pressure when they do this, so all that looked good.  They took samples of fluid.  So far the numbers are all looking good with nothing pointing towards a bacterial meningitis.  

That said...we still don't have a clue what's going on.  Everything keeps coming back negative.

Please keep Peyton in your prayers.  Today was pretty scary.