Despair and Hope

I just posted this over on my personal blog.  I thought it was worth repeating over here.  Rather than just hyperlink it, I decided to just post it here as well.  If you've come from my other blog having read it over there, the rest of the post below this paragraph is the same.  Thanks for stopping in and sharing a bit of our journey.
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My online presence lately has been somewhat limited lately, considering all we've been going through with Peyton.  I have had much stress, anxiety, and even despair over some of life's events lately.  Since I try my hardest to keep this blog a positive and encouraging place, I decided that it isn't the place to air out everything that's going on, even if writing it out is therapeutic for me.
With silence comes isolation.
Unfortunately, the reality of our situation is far beyond what we feel capable of handling, so I can only imagine that it's pretty well next to impossible to imagine what it's like being out the outside looking in.  It is isolating.  Yet in our isolation of this experience, I know we are not alone.  I imagine this is the case with most anyone who is a full-time caregiver to someone who is terminally ill.
Terminal.
No, we have no "disease" diagnosis where Peyton has been officially labeled and stated out loud as being "terminal".  That said, whatever her general condition is, it is declining - and it won't improve.  The best she's ever had was the best she'll ever have.  It's long since been put behind us.  While there are the people who have drawn closer because of our experience, many more have backed away.  I suppose they are afraid on some level.  Unsure of what to say or do.  Maybe simply incapable of handling "this".  I understand - no one likes a downer and, well, our life isn't the most upbeat it's ever been at this point in time.  It's sad, really, that people shy away from situations where they are really needed or wanted the most in the lives of the ones actually physically experiencing the situation.
On a day when I went to church really feeling a burden of the label of being that mom from that family, we heard a message about miracles - the ways in which God performs miracles.  It could be the miracle of all He has created.  The miracle of His favor being extended to someone or on something.  Then there is miracles through direct intervention.  This is what hit me hard.  
We desperately need a miracle for Peyton.  While most everyone on my Facebook wall was commenting on the Oscars, I just had to tune out.  I wanted to part of it.  I didn't watch the show.  I didn't care who wore what, who was in what, who won which award.  I couldn't even tell you which movie won Best Picture.  And I don't care.  Why??  Perspective.  Experience a few hard-hitting things in your life and you may also realize that life isn't about any of that.  All of those people??  They live, breathe, eat, sleep, get sick, eat too much, eat too little, have fears, etc. etc. etc. just like anyone else.  They are just people.  Certainly not worth of idolizing.  I just kept thinking of all of the millions of dollars poured into entertainment.  Not just the movies - just take that one singular event - The Oscars.  The millions upon millions that went into gowns, jewels, shoes, makeup, hair, publicity.  The thought of all that money, right now, is just simply grotesque to me.
Why??
Because we are looking for a miracle.  All of that money packed into one auditorium and event isn't enough to fix Peyton.  I'm pretty sure this guy couldn't even fix her:

Source: princessbrideforever.com via Liz on Pinterest

Wouldn't it be nice just to be able to buy the fix you need for anything??  It's not always possible.  We don't have that luxury.  We're up against a ticking clock, and there are no answers.  Nearly 7 years of trying to figure things out haven't provided us with the answers we need to do anything to "fix" her.  Medical science is amazing - and I believe that God has gifted people in this area to help people here on earth.  But some things are just beyond their grasp.
We found out in the past few days that the world expert on copper disorders doesn't believe he can help Peyton.  Part of her litany of symptoms is a severe copper deficiency - just discovered that this past fall, yet it is probably one of the most significant findings of her life.  If that guy can't fix things, how can we expect anyone here on earth to??  Now, please understand, there is so much going on with Peyton that this is only one piece of a very complex puzzle, and anything he might have offered would not be a cure all.
Despair.  Then Hope.
The message at church was incredible.  I wrecked me because we are so in need of a miracle.  I did speak briefly with our pastor after the service.  He assured me Peyton would one day be healed.  This I know - I've always believed that.  He re-stated that it would be in her lifetime, in heaven, or when Jesus comes again - but it is not for us to know.  He said a few things that were reassuring to me, offering some little bit of hope in the despair I have been feeling.
Then there were people that day.  There were a couple people who I just saw randomly who came and spoke to me.  Then I had an experience yesterday which really blessed me.  That same person later offered some additional encouragement.  I felt like I was experiencing a hug from God or something.  During a time which has been highly isolating, He sent me a few people specifically to show me He is there and He loves me.
I cannot explain why things happen to us which don't happen to other people {Peyton is extremely likely to be the only person in the world like her.}  I cannot explain why nothing bad seems to ever happen to others.  I cannot explain the actions of people, whether good or not so good. All I know is that God has us in this place for a reason.  For whatever reason He has, He has chosen us to follow this very special, yet very difficult, journey.  It is not all despair - the blessings we have received along the way are immeasurable.  To those of us who have supported us along the way, especially now, thank you for being there.  And thank you for being brave enough to shoulder the burden with us.  Much love to you all.

A Rare Treat

This is a very rare treat indeed - for a couple of reasons.  First, I caught this picture of Peyton after I put my own glasses on her.  She thought it was pretty funny and she was all smiles.  Second, look at her!  Just look at that sweet face.  You would never know by looking at this picture the extent of what she's been going through and just how ill she is.

I love this pic.

Given all we've been through lately, I thought you should get the chance to see it too!

She Could Break

This is our strange new reality.  Broken bones.  We've been home with Peyton since Thursday night.  It is strange.

Peyton lays in bed.  She receives all of her breathing treatments in bed.  All of her meds are given in bed.  Everything - in bed.  It's a delicate little dance we do every time she needs a diaper change or shifted or otherwise moved.

She could break.

It's a few fear we have, though the reality is that this has been the case for at least a short time unknown to us.  How do we touch her?  Should we touch her?  Will one false move injure another limb?  Will her chest physical therapy {CPT} break her ribs?

We look at her.  We help her.  We do what needs to be done.  But there's an underlying fear of breaking her little body in some way.

It's a very strange reality.  How many parents have this fear - and have it be a truly legitimate one?

Monday will be interesting.  Her wheelchair is going to be adjusted.  In the process, Peyton will have to be transferred from crib to chair and back again.  Perhaps the process will need to be repeated.  It will cause her some level of pain to do this.  I don't want to hurt her.  Moving her means there's a greater risk of injury.

She can't stay lying in bed.  That's not good for her either.

I just want to protect her and keep her safe.

Being Realistic

I think there comes a point in time when you have to be truly completely realistic about a situation.  I believe Ron and I have been doing our best with this for nearly 7 years now.  We've tried to be as open as we needed to be about the specific things that have been going on in Peyton's life.  We've never glossed over anything.  It shouldn't really come as a surprise that Peyton is a very sick child.

I feel like we're moving through phases.  Special needs.  Medically fragile.  Now this.  What's happening now feels like a new phase.  The concept of "special needs" seems not to capture the essence of what we are dealing with at all any more.  "Medically fragile" seems more accurate, but it feels like more than that now.

We're trying to adjust to a new reality.  When Peyton was in the hospital last October, she was in for 17 days and the doctors came up with no answers for why she was so sick.  There was clearly something going on, but every test under the sun revealed nothing.  Then she was in the hospital last week with respiratory issues.  Again, she did not test positive for anything.  While you might think that's good, it's really not.

While they tend not to talk in terms of "DNR" orders, I cannot tell you how many times over the past couple of weeks I have answered questions related to what we'd commonly think of as DNR orders.  For my 6 year old.  This is a topic we broached cautiously a few years ago during a particularly bad time in Peyton's life, when her illness nearly required her to be on a ventilator during one particular hospital stay.  The concept of making decisions for Peyton's life is not new to us.  It started back then and, while we haven't had to discuss it much in the hospital until now, it's been on our minds since then.  Yet it's back in the hospital realm again.  One doctor after another asking the question, needing to be sure that the information they have is still what we want.

I feel sometimes like we're living in some other dimension from everyone else we know.  I mean, who else {besides us} has a plan for their child "just in case"??  What other mom out there refuses to take a 24 hour getaway because of the horrendous guilt that would overtake her if something happened while she was away?  And do you have any idea how much this family desperately needs that type of respite??  There are no vacations to look forward to on our horizon.  Who else {besides us} lives with the knowledge that something very likely could happen to their child at any time.  Yes, I think all parents have fears that something could happen to their child.  I'm talking about a very real fear that comes from the knowledge that something actually could happen because your child is for all intents and purposes terminally ill.  Not with cancer.  Not with some other life-threatening disease with a name.  But with a condition that, while undiagnosed and un-named, threatens to take her from us before we want.

I am not being paranoid or pessimistic.  I am being realistic.  Our new normal is just about more than we can bear.  But we will and we do because she is our child and this is our life and I cannot imagine doing anything other than what we are doing for her.  I wouldn't change what we are going through because it's not for me to change.  God has a plan.  He's had this plan all along.  No matter how He chooses to heal her - whether it is through some miracle which will heal her hear on earth or it's through His perfect healing which will last for eternity - that is His plan to carry out.  Unfortunately, we don't get to know what that plan is.  We find out along the way the direction things will take in each moment, but we don't know what lies ahead.

All we can do is pray.  And ask for prayers.  And more prayers.  And start begging everyone around the world to pray for her because I feel like that's just about the only thing that we can do besides medically manage her issues.  I pray specifically for Peyton and her healing - however that has to happen.  I also pray that Ron and I will be given some sort of supernatural strength to deal with the present and whatever lies ahead.  I pray that God will give us strength to bear all that comes our way and gives us whatever support we need as we journey through the days, weeks, and months ahead.  

We don't have a "timeframe", in case you're wondering.  It's all in God's timing.  

That's the only thing I know.

Another New Normal

Yesterday was a long day of playing "hurry up and wait".  We were anticipating being able to bring Peyton home yesterday, but we had a couple things to get out of the way first.

First, it was Valentine's Day.  Peyton has never spent a "holiday" in the hospital.  Of all her admissions, I'm pretty sure this was the first, although it's been close before.  Ok, so it's not a major holiday, but it's a recognized "event" if you want to call it that.  The tech came in to her room at some point during the day and handed me this:

It was also decorated and signed on the other side as well.  Signatures include the tech who delivered the card, various nurses, her Respiratory Therapist, and even the cleaning staff!  Later in the day, Peyton got a big red heart balloon.

Before leaving, two physical therapists from MUSC led a little education session for myself and members of Peyton's home nursing team {one of her home nurses, the business manager, the nurse manager, and one of the other nurse supervisors}.  Everyone wanted to be present for this so that we could all be on the same page as far as how we need to handle Peyton now.  She needs to be handled in a fairly specific way now, considering the multiple current fractures and the brittle bone condition.  They looked at how to handle her for diaper changes, moving her, and transferring her from crib to wheelchair and to her car seat, which Ron had brought up the previous night.  That went very well.  Any concerns or questions were handled, so that was reassuring for me as we prepared to bring Peyton home.  It worked out well {read further down about how Peyton got home}, because the nurse who would be working once Peyton got home was in attendance and she offered to bring Peyton's wheelchair, car seat, and a couple of our bags home with her so she could bring them later when she would come to our house to work.

There was a question of some outstanding labs that were being requested.  These were specifically for the purpose of Genetics in Boston.  Several things are being coordinated between them and our Neurologist here at MUSC.  Dr. K has been wonderful.  I really do like him.  I have a great deal of respect for him.  He has been extremely helpful in coordinating efforts with Dr. T in Boston.  There are lots of hurdles and challenges, especially considering the nature of these tests, being that they are really for research and not part of a treatment protocol.  So, many thanks to him for leading this effort here locally for us.  That said, there are tests which are needing to be done.  When the doctors rounded yesterday, we found out that we're just going to work on getting those taken care of when we see Dr. K in clinic next time.

Then came the discharge process.  There are issues with Peyton's wheelchair as it is right now.  It needs modifications made to it so that it is safer for her.  That said, until that happens, we can't use it safely.  That will happen on Monday, but until then, we can't use it.  The nurse case manager made arrangements for Peyton to get medical transport home.  Once they were into the discharge process, they called the number {this is through Medicaid} and an ambulance was arranged for her.  Now, it's kind of like AAA in that you call a number and they find an available provider to handle the service.  The wait time could be anywhere between 30 minutes to three hours.  Our wait was closer to the three hour mark.  But I wasn't complaining - this was the safest way to get Peyton home.

Around 5:30 the EMT guys arrived in her room with a stretcher.  They simply pulled the fitted sheet off the mattress, and rolled the ends together over the length of Peyton's body, and {holding her carefully} shifted her from crib to stretcher.  They got her all bundled in and strapped down.  They had an oxygen tank right there on the stretcher, so got her hooked up to that.

At the nurse's station, we stopped as there was some paperwork to handle.  I had to dig out Peyton's insurance cards so they could get a copy.  It only took a few minutes.

We then made our way to the elevator.  It's a bit of a maze getting from the 7th floor down to 1st on the patient transport elevator.  We wound our way through the adult ER {changing direction once or twice}, and out the ambulance entrance.  They got Peyton loaded into the ambulance.  I originally was under the impression that it was strictly a ride only, but it was, in fact, full ambulance service.  They hooked her up to the pulse ox monitor and adjusted her oxygen when the EMT thought it needed to be bumped up a little.  He was very attentive to her and very concerned about any bumps we might hit on the road.  He was concerned for her safety and comfort.  Very nice.

This was Peyton's view {I snuck a couple iPhone pics while on board...I was in the back with them}:

We made it home somewhere around 6:30, give or take.  It's funny how an ambulance showing up will bring out the neighbor kids.  We had two or three show up {I think after we actually had Peyton inside}.  When the EMT guys left, I saw them talking to the kids as they put the stretcher back in the ambulance and closed the doors.  Peyton was brought into the house on the stretcher.  As her room is immediately to the right as you come in to the house, it was a bit of a tight turn, but they managed to get the stretcher into her room, right up next to her crib, which is like a hospital crib.  They basically did the reverse process as to what they did to get her on the stretcher.  It all went smoothly and they finished up and left.

Within 30-45 minutes of arriving home, the doorbell rang.  There was a lady at the door with a box.  I didn't recognize her, but she said she was from our church.  She had the biggest smile and was just so sweet.  She had brought us food.  I was just so surprised and, of course, thankful.  I posted something on facebook and it seems that this was food sent over to us from our church's Luke 14 banquet which was happening last night.  If you don't know about that, you can read more here and here.  It is a banquet put on at our church to honor people with special needs - young and old alike.  It is a wonderful event and we have been blessed to attend the past three years.  It wouldn't have been possible to go this year anyway given Peyton's overall health issues, but certainly not this year with her being in the hospital.  That someone would even think to send over a meal for us from that banquet is just so incredibly thoughtful, it brings tears to my eyes.  So, thank you!!

So, we are home now and we are trying to settle in to this "new normal".  I am sure things will feel better in time, but right now it is scary.  I'm scared to touch Peyton or to move her the wrong way, or to know that I could potentially inadvertently break her!  She requires so much more care now - not that she didn't require much at all before!!  It's a new set of challenges to deal with.  It's a new lifestyle.  I have felt fairly tied to home before all of this.  Yes, we do leave the house to go to church or run errands.  We will leave home for a few hours, with Peyton in the care of the nurse.  Recently, we've only brought Peyton out of the house for doctor appointments.  That much will stay the same, but bringing her out for those appointments now will require even more care and effort.  And I feel like I'm hesitant to consider leaving the house for any reason now.  Me - not with Peyton.  It would certainly seem that our pending trip to Boston is off the table for now.

Peyton is fussy today.  She's due for her pain meds right now.  Like clockwork.  You can definitely tell when she needs them.  It's so hard not to cry when I see and hear her like this.  

I want to thank everyone for their prayers and support.  We still need them.  Do we ever!!  We have received so much love from so many people - people we know and people we don't.  From family to friends to church family, we've been blessed by all your support and prayers.  Then there are people who are friends of friends, or friends of friends of friends.  There are friends I've met through blogging who have been praying, and others in the blog world who are but who I don't know as well {or at all}.  I love watching blog stats, and this blog is no exception.  I'm looking at where people are coming from in the world and it's been amazing to me.  So if you are here and are following her and offering support in some way though you do not know us, thank you.  If you are one of her caregivers or know her from the hospital of from somewhere in the community, thank you.  If you are a member of our church - or another church - or are finding your way here because a friend asked you to pray for Peyton, thank you.  However you wound up here, we truly thank you for all your support.  And for your continued prayers and support.  This is an ongoing challenge and there are a lot of new issues which are going to make our world just a little more {maybe a lot more} challenging and we need your prayers.

Thank you for everything.  Thank you for visiting.  As always, I'm going to keep posting on her progress here.  I hope that you'll come back to check in on Peyton.

What Day Is It Anyway

As I sit here in Peyton's hospital room, I have to say that I really have to think hard about what day it is.  Is it Monday?  Tuesday?  Saturday?  Oh, yeah, it's Wednesday.  Forget thinking about the date!  We were here Tuesday to Friday last week and we've been here Sunday through Wednesday now this week.  I feel like I haven't been home in weeks, even though there was a brief 48 hour period where I think I actually was at home.  It's all a distant memory.  Being in a hospital 24 hour hours a day without stepping outside your room except to travel with your child to one radiology suite or another really confuses the heck out of your internal clock.

So, where are we at now?  Where did we leave off?

Bones.  Yes.  Peyton's bones.  Brittle bones.  Not to be confused with what most people think of as "brittle bone disease" {osteogenesis imperfecta}  This is not what she has, although her condition is brittle bone "like".  Confused??  Essentially, there are a number of factors that have contributed to Peyton's horribly poor bone structure.  She's special needs - many special needs children {particularly wheelchair-bound} develop bone issues because they aren't weight-bearing or using their joints the way healthy children are.  The bones don't get a chance to develop properly.  Peyton has been on seizure meds for going on 4 years {I think}.  Peyton is tube fed.  Peyton is severely copper deficient.  The list goes on.  But she has many strikes against her in the bone development category.

I eluded to some stressful events of late.  I feel I can at least clue you in now that we're past that.  In a nutshell, we have a young child who cannot communicate who came in with a significant fracture of unknown origin.  There is a certain protocol that has to be followed regardless of how much the evidence points to a medical condition.  It certainly doesn't sound "fair", but can you imagine how fair it would be for someone who was in this situation who did not have a medical condition if this protocol was not in place??  Immediately Monday morning, I was told what was going to happen and ultimately met with a forensic doctor.  She seemed very nice, but very professional.  Many, many questions were asked of me.  Many, many explanations had to be given.  Many doctors were consulted, including Genetics in Boston.  The chief of Radiology here at MUSC was consulted and ever last x-ray gone over since we moved here in August 2008.  Attempts had to be made at dating every fracture to see if it lined up with anything.  There were specific ideas in mind.  I finally found out yesterday that everything was going to be dropped without further investigation or a report being made.  Huge sigh of relief, but you can't even begin to imagine the stress that caused.

Peyton seems to be improving today.  She still needs pain meds regularly.  A physical therapist came by the room today to discuss ways to move Peyton - for diapering or transferring her from her bed to her wheelchair and back.  It isn't going to be easy - I'm not gonna lie.  Transferring could easily require two people.  Actually, it should.  There are a lot of concerns on my part.  I am so afraid of breaking my child now!!  People are nervous to touch her and I'm talking medical people!  That doesn't ease my mind at all!  Then there's the reassurance that this will happen again in the future.  The fractured leg and wrist are bad enough, but throw in a couple spinal fractures...that makes me even more nervous.

There is so much to take in.  I have been a huge ball of stress all week.  It's very stressful going home with this new situation.  Yes, going home.  Hopefully tomorrow!  First, though, the PT will have a meeting at 10am tomorrow with me and some people from her home nursing agency to make sure that everyone is on the same page as far as handling Peyton goes.  Then the hospital will arrange for medical transport home.  It will be via ambulance.  Not with attendants.  I have to be with her.  It's just a ride, but she needs to be on a stretcher.  Hopefully we'll be home sometime tomorrow afternoon.

Please pray for us.  We're all very nervous and stressed about this.

Thanks!

Bones

If I could narrow down the list of things that are very difficult on this journey, I would have to say that the worst feeling in the world {as a parent} is watching your child suffer - whether through illness or pain.  Nothing compares to the horrible feeling of watching your child suffer, screaming in pain and watching her in agony while being completely and totally incapable of verbalizing through words.  Nothing.  I honestly am not sure who has cried more - me or her.

right leg - note swelling and bruising of knee and leg

We came in to the hospital through the ER on Sunday, unsure of the cause of the swelling in her right leg and left arm.  Fortunately, one of the residents that night have the presence of mind to order an x-ray on her leg, as that revealed the startling news I shared yesterday - that Peyton had a seriously fractured tibia.  They ultimately ordered a skeletal survey rather than just an xray of her arm.  Her foot xray revealed what could be a metatarsal fracture.  However, it wasn't clear - it could actually just be some sort of defect or deformity.  Whatever the case, it is there.

The skeletal survey was done yesterday afternoon.  It is essentially a series of xrays examining every segment of the body from head to toe.  If the fractured tibia wasn't startling enough, this survey also revealed a fracture of her left distal radius.  Left wrist.  Ok, I know she was experiencing pain of her right leg, which I thought was coming from the chronic hip pain.  While that may be part of it, it was certainly because of the tibia fracture.  But I can tell you for certain that I do not recall her ever {how many ways can I stress "never ever ever" without sounding like a Taylor Swift song??} having any pain in her arm or wrist.  Ever.

The Orthopedist came to see Peyton right before her skeletal survey.  Very shortly after she was back in her room, another was back in the room with someone whose title I forget but I'll call him the "master plasterer". He's the splinting and casting guy.  Peyton's left arm and right leg have been splinted now.  They will stay this way for three weeks.  We can't get them wet.  She can't be bathed.  Only if we see her fingers or toes turning color can we rip everything off for circulation and rewrap.  I don't think I'd like to be going there!  Basically, there is cotton wrapped around, followed by a piece of something dipped in plaster which is affixed to the appropriate spots {bottom of foot up to back of leg just above knee, and back of arm to the fingers} to stabilize everything.  Then it's all wrapped in cotton again and then the outer wrapping.  In a few weeks, we will see Ortho again and they will assess, but probably will cast her leg and arm at that time.  If that's the case, I'll have to figure out how we can do a virtual cast signing for her!

Seriously...how comfortable does that look??  {insert sarcasm here}  Poor baby.  I feel horrible for her.

The Orthopedist came back to see us after this was done.  In a nutshell, her bones are really bad.  She hasn't been tested for bone density yet, but her bones {via xray} look really bad.  Really thin.  The doctor assured me that what happened is not unusual.  She's got multiple special needs.  She's on seizure meds.  She's tube fed.  She has this severe copper deficiency.  She doesn't stand or walk or do things that would promote bone development.  She has many many strikes against her when it comes to bone development.  This is not unusual or even unexpected.  In addition to these fractures, she also has two vertebral compression fractures at T2 and L7.  He said that we needn't feel guilty about any of this.  It just happened.  He said therapy could have done it.  Putting her pants or shirt on or taking them off could have done it.  Whacking her hand on her crib rail could have done it.  However and whenever it happened, it didn't take much effort.  That said, he indicated that this would not be the last time this happens.  And when it does, he said please don't feel guilty - it's not our fault.

All medical evidence seems to be indicating that it's related to her lack of bone development.  However, she came in as a child with multiple unexplained fractures.  If all of the above hasn't caused enough stress.  Yeah.  I'm not going there right now.

On top of all of this, her g tube clogged last night.  She has s g-j tube mickey button.  It's all in one.  The feeds go into the j port and they go into her intestines.  Meds go into the g port on the side and those go into her stomach.  The g is clogged, so she couldn't get her meds.  The doctors gave clearance for them to give them through the j port, but meds don't absorb as well when not in the stomach, so pain is a bigger issue this morning.  It's not fixed yet.  They are getting with Interventional Radiology.  I hope it doesn't have to be changed out.  She just had it changed it on Friday!  They are supposed to be good for 10-12 weeks.  Clearly we're not that far out yet!

Waiting on that to happen today.  Endocrinology is supposed to come see her as well regarding the bone issue.  They'll likely do a bone density test.

I will report back later, but in the meantime, would appreciate your prayers for Peyton's pain.  I am curious/concerned about how well her healing will go since nothing else seems to be done normally.  I am also worried about future injuries and missing them or just the pain that they will put her in.  This is obviously a very new and challenging situation we are being thrust into.  Pray for all of us!

Thanks!!

Breaking News

No pun intended, but it's the best blog post title I could come up with on less than one hour's sleep!

Peyton was taken down for x-rays on her leg at 2:30 this morning.  Shortly after 3:00 the residents came in.  I thought something was up when the two of them came in together.  The preliminary report from radiology actually showed something.  For some unknown reason, Peyton has a fairly significant fracture straight across her right tibia, just below her knee.  Yes, my baby has a broken leg!!  She may also have a fracture on one of her toes, but they weren't 100% sure it was a fracture.  It may be some sort of defect rather than a fracture.

Since her left arm is also puffy {though not to the degree the leg is}, they are going to do x-rays on her arm this morning before consulting Orthopedics.  They would rather know what they are dealing with with her arm beforehand so they don't have to call them back up later.  At this point, I have no idea what the treatment plan will be.  They are talking about how they will probably splint her leg.  I don't know if she will have to have the bone set or if it will involve surgery.  I hope not!!

There is the possibility that this is a bone density issue.  All sorts of questions might be running through your heads as to "how".  Trust me...they are running through everyone's heads here.  Let's not go there just yet.  Her calcium and phosphorus are low.  She is also not weight-bearing since she isn't really mobile, so she doesn't have the opportunity to build bone density like healthy children.  We will probably have other consults with other specialties.  We'll see what happens.

Peyton has been asleep since 4:00am.  This is her only sleep all night long, so I am hoping it lasts for a while longer.  Once she wakes up it isn't going to be pretty.  There will be plenty of tears.  And Peyton will be pretty unhappy too.

Crazy crazy news, right??  I'll keep you posted.

Did I Say She Was Home Again

Remember that last post I wrote where I said Peyton was home again?  Well...she's at her home away from home...again.  Yes, she is in the hospital.  Again.

This morning {Sunday} when Peyton woke up, I looked at her pulse ox monitor to see that her heart rate was running around 161-162.  I immediately felt her, as increased heart rate can come along with fever.  She felt hot, so I took her temperature.  It was 100.0.  Not horrible, but she normally runs low, so for her, that's probably more like 102.0.  She was also extremely irritable with her hip pain.  I gave her some Tylenol and Oxycodone.  I was thinking that we might be heading to the ER again, but when the nurse arrived at 8am, we decided that we could hold off on that.

Ron, Moira and I went to church as planned.  When we came home, she seemed "ok".  At least ok enough to feel comfortable with the decision to wait it out and not rush to the ER.  Within an hour or so, the nurse asked me to come and take a look at Peyton.  Out of nowhere, her left arm had become quite swollen as had her right leg.  In fact, I measured her calves and her right measured two and a half inches bigger around than her left.  Her good leg only measures 6.5" around, so a 2.5" difference is significant!

Our home nurse wound up calling up to the unit where Peyton had been discharged from and she eventually spoke with the resident who had seen Peyton in the hospital.  I ultimately decided that I was not comfortable with what I was seeing at all and we took her to the ER.

Long story short, she had a venous ultrasound and she does not have DVT {deep vein thrombosis, or, blood clot} in her leg.  Her blood work does not indicate any sort of renal failure.  In fact, there's just plain no answer...again.  The doctors essentially left it up to me as to what to do - stay or go home.  Well, I was definitely not comfortable with going home.  Her leg and arm are swollen.  What am I supposed to do with that??  What if it gets worse as suddenly as it appeared??  In fact, as we waited in the ER, her leg began to feel warmer and warmer.  The concern is that maybe it is cellulitis.  I decided that I would rather she stay for observation.  The alternative would be to go home, the nurse's shift would end at 8pm, and then I would either a) have to stay awake 12 hours til the next nurse would arrive at 8am Monday morning or b) fall asleep {I sleep in her room} and risk missing anything that might happen overnight.  At least in the hospital there would be people to monitor her through the night.

So, here we are...again.  And I am pleading for prayers for her...again.

I will keep you posted on any new developments.

Home Again

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

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

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

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

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

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

Day 3 Update

I have to say that my admiration for Peyton is at a new high right now.  This poor child has endured more than most and just when you think she's endured enough, she pushes through something else.  Today she had her first ever {and hopefully only} lumbar puncture.  The Neurologist hoped to be able to do this without sedating her.  It was done right in her room.  He and the doctor from the PICU whose service Peyton is on were both in the room as well as a 4th year med student and a nurse.  Once the Neurologist was present, it was non-stop activity for the next 30-40 minutes as Peyton was prepped, trays set up, consents were explained and signed, and so on.  I was also present in the room during the procedure.  They used a numbing cream on the area.  Peyton was turned on her side and tucked into a fetal position.  Now, Peyton likes to lie flat...period.  She does not like to be held down.  It was looking like we might have to reschedule for a date when she could be sedated.  However, they were able to keep her still enough for long enough to get the spinal fluid samples that they needed.  From my view {I was facing Peyton's front side}, I could not see the 3" long needle being placed.  It's not just a long needle, but it's a larger gauge needle.  I think you could drill a hole through the ice frozen over a river with that thing to do some serious fishing.  Ok, it wasn't that big, but it was sizable.  Peyton did get morphine during the procedure.  I do not think she felt much, if anything.  I think her biggest complaint would probably be from being held against her will.  Afterwards, they kept the crib flat rather than have the head raised.  This suited Peyton just fine.  She doesn't like to be on an incline.

She seemed to do well today from a respiratory standpoint.  Well, as good as it gets for her.  I discussed again with the doctor the fact that what we are seeing here is a decline in her overall condition.  She likened it to someone with muscular dystrophy {not what Peyton has}, where over time you see the muscle weakness and eventually internal systems become affected - heart and lungs being the major ones.

There's not a whole lot more going on just now.  We hope to be out by the weekend.  Perhaps we'll be home sometime Friday.  Her g-j tube is due to be changed out next week and we are hoping to have that done before we leave here.  It would save us a trip back next week just for that.

Aside from all of this, the samples from the lumbar puncture will be on their way.  This is part of the studies that Genetics at Children's Hospital Boston needs.  It's not related to this current hospital stay.  I did email Peyton's Geneticist up there to let him know she's in the hospital and that the lp was being done.  I heard back from him.  He let me know that they have begun the gene sequencing with the blood sample of Peyton's that was banked up there when we were there in August.  There appears to be some sort of technical difficulty at the moment, but they hope to have some results within a month.  If you are unfamiliar with genetics testing, just know that tests are not done overnight.  It can take days, weeks, or many months before there are answers.

I just want to thank you all for your incredible support for Peyton.  You have no idea how much it means to us.  Thank you all so much.  Please continue to pray for her as well as for a resolution to whatever technical issues are involved in that genetics testing up in Boston.

I will keep you updated on how things are going here.

Today's Update

There truly isn't a whole lot of "news" on Peyton.  Any lab work that has been done has come back negative.  That's good, but it doesn't explain anything in terms of what is causing Peyton to be sick.  The PICU doctor spoke with her Cardiologist.  She even had an echocardiogram done.  The answers don't lie there either.  In speaking with the Cardiologist, it's just a mystery.  It's good that it's not pulmonary hypertension.  But if it's not that, then what?  If it's not a pneumonia or other respiratory infection, then what?

The only explanation is the one we don't want to know about.  That is to say, that the only likely explanation for what is going on with Peyton is that she is experiencing a deterioration in her overall condition.  I talked to the Pulmonologist about this.   I think that he is in agreement with this assessment.  Over time, things change. It could be gradual or sudden.  He said it's their goal to try to slow this process as much as they can.

What does it mean?

I don't know.  I really don't.

I'm weary, though.  We're being asked questions I don't want to answer, yet have to.  Just in case.  Then there are all of the thoughts that are racing around my brain.  What if?  What then?  When?  What after?

None of this is surprising.  None of this is unexpected.  But none of this is welcome.

I don't have any answers.  As to the "when" - we don't know.  Years?  I would doubt that.  Is anything imminent?  I would seriously doubt that too.  We just need to keep on keeping on and hope and pray for the best.

Now, aside from all of that, I have not heard anything more about the lumbar puncture being done Thursday.  Peyton had a hip x-ray.  The person who came up to the room to do the xray is one of the people who is always in the room when Peyton is having her gj tube exchanged.  This is due to be done next week, so as long as she was in the room, I asked if it might be possible to have this done while she is in the hospital rather than having to come back next week.  It sounds like this should be possible Thursday as well.

For now, Peyton is sleeping.  She'll be interrupted soon enough for her evening respiratory treatments and meds.  But she's sleeping despite a sudden room change.  Apparently doctors don't take too kindly to toilets leaking down the wall into their office on the floor below!

Anyway, I'm about to tune in to our First Wednesday service online.  This is the first time I've missed being at First Wednesday in many, many months.  Kind of bummed about that too.

I'll keep you posted on what's going on here.

Back to the Hospital

We thought we were in the clear when it seemed that Peyton did not get that nasty GI bug that Moira, Ron and myself all got.  Yet this morning, we wound up taking Peyton to the ER.  Not with a GI bug, but yet another respiratory ailment.

I've spoken several times lately about how Peyton is requiring oxygen during the day while awake - something that never used to be the case.  This has not changed for the past several weeks.  However, over the past couple of days, the amount of oxygen she is requiring during the day has increased.  She has also been a little on the junky side, with increased heart rate and the odd low grade fever here and there.  I've been in touch with the Pulmonary clinic about her condition and it was suggested that perhaps we might need to start a course of IV antibiotics.  We can manage this at home since she has a port.  By the time last night rolled around, I was thinking I'd definitely make the call to the pulmonary clinic to suggest that we get that started.  Peyton was sounding horrible and it didn't look like we needed to wait on this any longer.

Then this morning came around.  Peyton was hot to the touch so I undressed her and got a temp on her.  She had a temp of 100.8.  That may not seem like a raging fever, but you have to bear in mind that her "normal" is upper 96 degrees to mid 97 degrees.  And, of course, we're ultra cautious anyway, so 100.8 isn't anything to mess around with.  In addition, she sounded even worse and she just looked "off".  I made up my mind that we were going to have to take her to the ER, but I also knew we'd have to call the home nursing agency pretty quickly to call off her nurse for today.  She has transportation issues, so we would have to be sure to catch her before she left, as she has someone bringing her to work.  No sooner did I form that thought did the agency call me to say that she had called in sick so I guess for today it all worked out.  Ron got Moira on the bus to school and I got Peyton and her gear ready to go and we headed off to the children's ER at MUSC.

Ron dropped us off at the door and then went to park the car.  I went in with Peyton and we were taken back to a room pretty quickly.  Once in a room, it was mere minutes before a doctor was in the room.  It seemed almost immediate.  While we did bring her in because she was obviously sick, apparently she was sicker than we realized.  The doctor enacted their "rapid response" protocol immediately based on their assessment.  This meant that her port was accessed within minutes and a bolus of fluids was pushed through very quickly.  They gave her additional fluids shortly afterwards.  Antibiotics were ordered and given fairly quickly as well.  A second antibiotic was given not long after that.

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A lot of blood was drawn for labs and a chest x-ray was also done.  The x-ray doesn't look too bad.  We're still waiting on the blood work results.  The doctor was in several times.  We knew pretty early on that Peyton was going to be admitted to the hospital, but there was some concern over whether it would be to the PICU or to the PICU step down unit.  They eventually decided on the step down unit.  With the fluids and oxygen, Peyton's color and mood started to improve a little.  Her heart rate finally came down out of the 150s.

We didn't spend a horribly long time in the ER before Peyton was taken to a room.  She is under the care of the PICU doctors, as opposed to the general peds team.  She wasn't in the room long when her Neurologist came by.  He just happened to notice in their computer system that Peyton was in, so he came by to see what that was all about.  I was glad, since I was actually going to email him to let him know.  We discussed the lumbar puncture and other research type issues that are hanging out there for Boston.  He is thinking that if she is doing ok, he may be able to do the lumbar puncture on Thursday.  

In addition, he is talking about contacting the researchers {Children's Hospital Boston and NIH} to see what we can do about expediting some of the stuff that's hanging out there in the hopes that we can get her some form of treatment.  Of course, it's research and there are FDA guidelines and I'm sure other sorts of hurdles to cross, but he is hoping that somehow he might be able to take some of that from them and perform whatever needs to be performed right here at home rather than have her travel.  He is looking at it from the point of view of being "emergency and compassionate" reasons.  We will see what happens.  I would say that if someone said we were needed up in Boston in the next month, we probably wouldn't be going.  She needs to have all this stuff done, but it's getting to the point where it just isn't going to be feasible because of her medically fragile state.

We aren't sure what is going on.  There is the great possibility that what is {and has been} happening are not so much an illness as they are signs of her overall condition diminishing.  As the PICU doctor said, often children with severe issues like Peyton, over time, will become weakened in the areas involving swallowing, breathing, and so on and what appears to be an illness might actually be more of an inability to perform these functions well.  We just don't know.  I would suspect, though, that because of her increased oxygen requirement during the day that it is the latter.

In addition to all of this, Peyton's level of pain today must be excruciating for her.  She is on Neurontin and Oxycodone for pain, but it seems like that's not doing anything.  I noticed it first thing this morning.  I barely touched her leg and she began screaming out in pain.  I don't know what is different about today but it is unbearable for her to be touched or moved.

We pray.  We pray often and we pray hard for Peyton.  The problem is that we don't know which direction our prayers are supposed to take.  It is heartbreaking to see your child enduring so much.  You wonder how much a body can take.  In addition, this isn't something we've really talked about openly, but we're being asked questions that no parent should have to answer for their child regarding the "what if" scenarios.  As much as you are praying for Peyton, please pray for us that we will have the wisdom to make the best decisions for her.  Please feel free to share this site to people you know would be willing to pray for Peyton. She needs many prayers!!

Thank you!