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.

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.

Things Are Looking Up!

I am SO happy to report that Peyton finally turned a corner just a couple days ago!!!  The first day was good, the next a bit better, and then today she did well.  She's not 100% - but it's exciting all the same.  She has been in much better spirits the past couple days.  She has more smiles for us, which is awesome.

Peyton is still on IV antibiotics.  She has the midnight dose tonight, 8am and 4pm tomorrow and then one last midnight dose.  So in about 28 hours from now, she will be finishing up her last dose of both IV meds.  I'm excited but cautious.  As I said, she's improving but she's not 100%. We're excited, but we have to remain a little cautious because she can backslide so quickly.

She sees the pulmonologist on Tuesday at 10:45am.  This is great timing since it's just a few hours past what would have been an 8am dose of meds Tuesday (which won't happen since they end with the midnight doses that day).  We'll see how she does.  I have confidence at this point that we can do the Boston trip!!

Don't get me wrong, traveling with Peyton is going to be very far from easy.  I've already started to write out a plan of exactly what medical supplies we will need to bring (I keep a schedule of the rotation of supplies, so I have to know what is being changed out and on what days while we'd be away).  I'm also going through a mental checklist to see if I've left anything off the list.  I'm sure I have.  We have a Ford Edge.  Not a huge vehicle (certainly not tiny, but not huge!) and we have to fit a wheelchair and all our stuff.  We have to fit a wheelchair, an oxygen concentrator (bigger than a carry on bag but not as big as a full sized suitcase), 2 carry on size bags containing her smart vest equipment, her bipap machine, her nebulizer, a case or two of pediasure, her feeding pump, all her medical supplies that will need changed out (probably in a carry on bag), all her prescriptions, one of those electric cooler things that plug in to the car because she has meds that require refrigeration.  All of that and more.  And I haven't even gotten to her clothes yet.  Or OURS (and Moira's)!!  Maybe you need to pray that our Ford Edge turns into an Expedition before Saturday!!!  It would be so awesome to have something BIGGER to drive up there with.

I believe that the gates of heaven have been stormed with prayers by countless individuals.  I believe that it is only through the power of prayer that, right now, I can be saying that I have confidence that we can do this trip.  I am nervous about traveling, but I trust in Him - He has gotten us to this point and He can take us further!  Peyton is doing SO much better and very quickly.  As for me, I'm still exhausted, but that feeling of being at the end of my rope and beyond my capability to continue caring for her at home is gone.  Recall we were considering not that long ago the possibility of having her admitted because of her health and because of how I was feeling as well.  Don't get me wrong...I'm far from feeling like this is a walk in the park.  But I'm not at that breaking point right now.

Thank you all so much for praying for Peyton and our family!  Keep the prayers coming.  I will update with the outcome of the doctor appointment on Tuesday!

Update

I just wanted to give you an update on Peyton.  She's still on the two IV antibiotics at home.  That said, she's still sick.  On Thursday/Friday she was still having low grade fevers and was extremely junky sounding.  I think maybe there's been some slight improvement over the weekend, but not a tremendous amount.

I just posted a prayer request on our "Sisterhood" (women's ministry) facebook page.  Pardon the cut and paste:

"I need to ask for HUGE prayers for my daughter Peyton.  If you know me/her, you know our story.  If not, her CaringBridge page is www.caringbridge.org/visit/peytonfontenot.  She's had pneumonia for a little over a month.  After 2 regular "oral" antibiotics failed, they switched to IV antibiotics at home.  She's got an indwelling port, so she is able to have IV antibiotics at home.  The first round of those failed so they added a second IV med on top of the other one.  She's still sick and basically tomorrow is the date where I have to talk to the doctor's office to give them the update so they can figure out what's next.  She's already on 2 very strong IV meds so I'm honestly not sure what the "what's next" would be!  To top it off, we are supposed to be heading up to Boston to go to the Children's Hospital for some very much needed second opinions.  If she's on IV meds, we can't go.  If she comes off antibiotics altogether, at this point it's safe to say it won't be long til she's really sick again.  "Oral" meds aren't going to cut it.  So basically we need a miracle - a huge "sun stand still" prayer so that we can make this trip.  As it looks right now, the chances of us making the trip seem to be getting smaller and smaller by the day.  As it is, we are very afraid of what a trip like this could do to her.  I would ask that you join me in praying for her healing and for guidance for us.  I know it's all in the Lord's hands and I know He can heal her and give us the strength we need to get through this.  Thanks ladies!"

That's essentially where we are at right now.  It's not a good place to be in.  She needs to be healthy, first and foremost.  The Boston trip ideally needs to happen.  I know her PT here and her school providers are basically waiting to hear how the Boston trip goes so they can figure out how to best meet her needs here.  If we don't go, then I'm not sure what that means for Peyton here.  I'd love to know if there was a way we could send documents up to Boston and have an appointment via skype or something.

After over two weeks of Peyton needing round the clock care, including administration of IV meds through the night, I am worn out.  I'm worn out from the stress of a horrible nursing situation.  If we have one more nurse leave....  Peyton's hours were temporarily increased to 84 hours a week for the past couple weeks (up from 56), but before you get too excited, she lost 20.5 hours last week because of poor ability to staff our case.  The nursing situation has been beyond stressful for me.  Peyton's health alone has been very stressful for us.  I am sure that on some level there is a correlation between her health and the insufficient home nursing support we are getting, although her health is poor in general.

I just ask for lots of prayers for her and for us.  I am personally tapped out.  I'm beyond exhausted.  I'm getting only a couple hours of sleep a night - and that's not always a couple consecutive hours.  I have to be "on" 24 / 7 and I'm so beyond "done" right now.  I need prayers for strength right now.  The last thing we need is for me to suffer some sort of health issue because of this!!

Thank you all for your support.  I've had a great many people helping us out via play dates for Moira and bringing meals to our family and you have no idea how much this has meant to us.  Thank you so much!

Still Sick

Peyton's been home from the hospital since the 16th!  She continued on the IV antibiotics at home once her port was deemed to be usable!  That was a week ago today.  Her needle needed changed today (they have to be changed weekly if the port is continuously accessed).  I did that myself!  All is going well with the port.

Peyton, however, started to get sicker the other day.  She started running a low temperature and her heart rate was starting to climb again.  I contacted the pulmonary clinic and they've decided to have her continue on these antibiotics (which would have ended Wednesday) and also add a second IV antibiotic for another 7-10 days.  So my crazy med / sleep schedule doesn't show many signs of improving anytime soon.

Please pray that she improves SOON.  We are supposed to be leaving to head to Children's Hospital in Boston on 8/11 (by car) and she needs to be well and not on IV antibiotics for the trip!  I wouldn't want to risk anything happening with the port while we are away!

Thank you so much.

Keep the Prayers Up Please!

As you know, Peyton was able to come home from the hospital on Saturday afternoon.  Since she's been home, she's gotten just a little worse.  Not shockingly worse.  Not enough to go back to the ER...yet.  However, it's enough to raise our concern level for her just a little.

This afternoon, a nurse from the step down unit of the PICU called just to check on Peyton.  I explained to her what our concerns are right now.  She, in turn, contacted the gen peds doctor, who then called me back.  We discussed everything and there is enough concern to warrant bringing her back to the ER.  We agreed that we'd watch her overnight and see how things go, but if there is no improvement, we would bring her to the ER in the morning.  The doctor was going to give the ER a heads up just to say we might wind up back there.

Essentially, Peyton's lungs sound really "wet" still, which is consistent with the pneumonia.  Her last day in the hospital, she was on room air.  We haven't really been able to get her off oxygen at all (even while awake) since we've been home.  Her heart rate was back down into the 120s and low 100s/90s while sleeping - which is much better.  However, this evening, her heart rate is back up into the 130s/140s.  She slept for several hours today as well.

Please continue to pray that she improves significantly overnight so we can avoid another trip to the hospital.

Home Again

I must apologize.  Peyton wound up in the hospital overnight when her GJ tube came out last Sunday evening.  I had said that they weren't sure (at the time) if it could even be replaced on Monday, being that it was Labor Day.  Well, after much waiting...and more waiting...they finally decided it COULD be done.  She had a new GJ tube put in late Monday morning.  Then we waited...and waited...and waited...and then waited some more.  And then we waited and finally about 4 hours after the procedure, they finally got the orders to start her feeds up.  Then she had to be monitored for an hour.  THEN we got to come home.  We wound up getting home a little after 7pm on Monday.  INSANE.  BUT...it's fixed.

It's been a relatively calm week since then.  Today Peyton finished up the antibiotics that the Pulmonary doctor put her on a couple weeks ago.  I don't see that the antibiotics did anything at all except give her horrible diarrhea.

Please pray for us, particularly this Sunday as we begin the further reduced nursing schedule of 40 hours a week.  I can't believe just a couple months ago we had 84 hours a week.  Medicaid will soon come to find out what a horrible mistake they made when she starts winding up back in and out of the hospital with regularity.  Sigh.

That's about all the news here for now.

Ups and Downs

The road to recovery since this last hospitalization is up and down.  Peyton has some pretty good days but also some days where she starts running a low temperature or her oxygen levels aren't quite where we'd like them, thus requiring more oxygen at night.  She hasn't been sick to the point of needing to go to the doctor or to the ER, though, which is great!

We've had some big challenges in the last week.  I wrote about those on my blog over here:

http://fontenblog.blogspot.com/2011/08/please-just-pray.html

and

http://fontenblog.blogspot.com/2011/08/sometimes-things-cant-be-changed.html

Read in order so it makes more sense.  What has happened has been very challenging for us.  A lot of what's going on makes no sense and is hard to digest, but hopefully we can work around this and be ok with it in the end.  There's a lot of info, so I'd encourage you to hop over to the blog to read what I've already written on the subject.

Please pray for this situation for us!

Thanks!

Update

We made it through the weekend!

Peyton is feeling better still.  She still sounds kind of junky and has a lot of secretions, but overall, improved from last week.

We had her follow up appointment with the Infectious Disease doctor who, as it turns out, also attends Seacoast!  He is so nice.  Anyway, he said she sounded better today than she did at the appointment just the day before Peyton went into the hospital, so that's encouraging.  He stopped her antibiotics.

Please keep praying that she continues to get better and that we do not start a cycle of one hospitalization after another with ongoing respiratory issues like we had last year!

Heading Home!

It is official...Peyton is being discharged from the hospital today.  We are just now waiting on the paperwork to be processed so we can get out of here!

Peyton is sounding much better.  Not 100%, but definitely better.  We're coordinating our arrival home with her nurse manager from the nursing agency so she can assess her prior to the nurse starting her shift today.  I am hoping we'll be out of here by noon.  Wouldn't that be nice?!

Thanks for all the prayers and support.  I'll keep you updated on her progress.

Greetings From MUSC!

Peyton's still here in the hospital.  She is improving though.  The doctors rounded already this morning and they think she is sounding a bit better, but needs some more time on the IV antibiotics that she is getting (there are 2 different ones).  She is having an awful lot of really thick secretions, so they are going to talk to the pulmonary doctor about decreasing one of her meds for now.  It helps manage the secretions, but it also thickens them.  If they can decrease temporarily, then maybe what she's coughing up will be easier for her to manage.  They are also going to talk to the doctor in infectious diseases about switching over to an "oral" antibiotic (to be given through her g-tube of course).  If all goes ok today, they would probably switch her over tonight.  She is a bit anemic, so they are increasing her normal daily dose of iron.

Please keep praying for Peyton.  If all goes well there is a possibility they could start talking about her going home tomorrow.  

Thanks!

God is GOOD!

I last wrote on June 6th requesting prayers for Peyton because she was coming off all antibiotics for the first time in months.  I have to say that God is so very good.  Those prayers are being heard and are being answered!  She hasn't gotten really sick since she came off.  The occasional fever, yes.  The occasional odd thing, yes.  But definitely not really sick and definitely not needing to go back on antibiotics!!  Praise God!!!  She's sounding pretty junky and requires a good deal of suctioning lately.  She's been running low fevers and has increased heart rates lately as well.  However, on the whole, she's doing remarkably well, all things considered.  She's not where I want her to be, but I'm sure with more and more prayer, she'll get there.

The not so great news right now is that Peyton's home nursing hours are being cut from 84 hours a week to 70 hours a week effective July 3rd.  70 hours sounds like a lot...and it is.  But she needs every one of those hours!  She was allotted 84 hours a week back in February and it wasn't until this month that she actually really ever GOT all her hours consistently.  Thank God we changed nursing agencies, but now her hours are being cut!  I suspect it's a budgetary issue and not so much that she doesn't need the hours.  She needs them.  Even with her improving, she needs them.  I've been sleeping in her room for 2 years.  I have to be there through the night just in case she starts gagging and needs suctioned, or something else happens.  The loss of 14 hours a week means 14 hours less hands on time with Peyton.  It means less interaction with Peyton.  It means less therapy time.  Why?  Because I am the one who will pick up what the nurses won't be doing and I have more than just Peyton to be concerned with.  I will do the best I can, but it's going to be a big adjustment and it, no doubt, will impact what quality of life our family has right now.

Sigh.

On a positive note, I am really trying to listen to what the Lord is telling me through all of these trials.  I wrote a guest blog on a friend's blog the other day about trusting God and finding strength.  The link is:

http://www.naptimediaries.com/2011/06/trusting-and-finding-strength.html

Little did I know that only two days after I wrote that, I'd be needing to re-read my own words to draw some strength from to make some sense out of today's situation with the nursing hours.  I followed up what I wrote there with a blog post on my own blog:

http://fontenblog.blogspot.com/2011/06/when-trust-in-lord-is-tested.html

I don't think I have most of the answers most of the time, but I've had a lot of positive feedback from the posts, so please feel free to share my blog with others who may be in need of encouragement.

And back to a positive note...

We've been with the new nursing agency for a few weeks or so now.  I have to say it is a decision I do not regret at all.  The reduction in hours has nothing to do with them, and they are sympathetic to our situation but it's not up to them how many hours Peyton qualifies for.  Since switching agencies, my stress level has diminished considerably, although I'm still fairly stressed.  

Just to update you on me, lest anyone thinks I have no time to take care of myself (which is often true!), I went for a physical myself a couple weeks back.  It had been a while since I had a general physical.  "Female" stuff, I definitely keep on top of, especially considering my family history!  But general stuff, I haven't managed to keep up with lately.  I have a cyst on my left elbow.  It's been there a LONG time - far longer than I'm willing to admit.  I am seeing a general surgeon in a couple weeks to discuss having it removed.  It's very small and only causes pain once in a while.  It's right where you lean on things with your elbow, so it does get irritated every now and then.  Very annoying.  Not a big deal, and nothing to worry about - but it's got to go!!  I've been having numbness in my arms/hands (continuously on the left side and once in a while on the right) for close to 2 months now.  Talk about annoying!!  I have to go for a nerve conduction study in a couple weeks.  I'm sure it's probably just a pinched nerve in my back or neck and nothing more.  Not worried - just annoying!  I have high cholesterol and low vitamin D.  Nothing I have to do anything about immediately.

So there you have it.  All is fairly well at the moment!  Thank you for the prayers!  They are working!!