Just a Quick Update

It's been a week since I updated.  I have to say, really, that there is no real news to report.  I am sure that there are people who are wondering what the latest is, especially when there hasn't been any news in a week, so this is really just to ease your minds that there really isn't anything new going on.

We have concerns over Peyton's foot since coming out of the splint.  I mentioned that last post, I believe.  We are still waiting to get the splint for her foot and the knee immobilizer.  Those should be coming to us at some point this week.

We are again about to be in a state of transition with our nursing.  Peyton's main nurse is a travel nurse and, sadly, she will be leaving us at the end of next week.  In my opinion, she needs to just stay here, but I don't suppose I can make her do that!!  Failing that, she needs to clone herself.  She truly is one of the best home nurses Peyton has had and we'll really miss her greatly!

I am over a week into doing the night shift with Peyton.  There are times, I must admit, where it is very difficult for me to stay awake - at the beginning of the shift.  This has mostly to do with how much sleep I was able to get the day before.  I'm sleeping between about 9 / 9:30am and 1:30 / 2:00pm.  For some reason my body clock doesn't seem to want to allow me to sleep past 2:00 or so, although I did sleep til about 2:30 yesterday!  I require a couple hours {at least} of sleep in the evening.  Combined, the number of hours of sleep isn't great.  However, the quality of the daytime sleep is far better than the evening sleep I was getting prior to making this transition.

As for what I do during the night, it varies.  Peyton is quite often awake most of the night.  She sometimes needs suctioned.  Her pulse ox monitor sometimes alarms and I need to check on that.  Sometimes I need to increase her oxygen.  There are often diaper changes during the night.  Sometimes 1.  Sometimes 3 or 4!  She needs pain meds during the night.  The past couple days, a quick breathing treatment because she's been fairly junky in the morning.  12 hours is a long time to go without a treatment when something is brewing.

Aside from Peyton, this is my time to do what I'd normally have done during the day.  The laundry gets done.  Clothes for the morning are ironed.  The dishwasher gets loaded and run.  I have been knitting a lot for my shop.  My goal is to create a stockpile so, come next fall, I have a good supply of ready-to-ship items.  I blog.  I stalk my Scentsy workstation {shameless plug at 2am...if anyone's interested in hosting an online party, let me know - I can get you started!}.  I catch up on Netflix.  If anyone has any suggestions on things I need to add to my queue, let me know!!

Peyton's next appointment is with the Endocrinologist.  I'm anxious for that.  She needs to have bone density testing done and she'll need to start on some kind of treatment for her brittle bones.  I'm anxious to hear when that will all take place.

I'll keep you posted on how all that goes!

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.

And So It Continues...

That heading could apply to a couple things going on, so here goes:

Yesterday I asked for continued prayers for Peyton that she doesn't wind up getting sicker than she is now.  Please please pray. She wound up with a fever last night.  None today, thank God.  But she's not herself.  She sounds very junky when she's breathing.  She's becoming clammy every now and then throughout the day.  She's requiring oxygen support during the day.  Her oxygen levels keep dropping into the low to mid 80% range.  She began an antibiotic a couple days ago.  I don't see any difference for the better so far.  I a in touch with the nurse practitioner in the Pulmonary clinic since we visited on Tuesday.  I will likely try to get some input as to what things would need to look like for us to wind up going to the ER - since it's the weekend and all.

Home nursing.  If you've spoken with me lately, you'll know that the past few months have been so frustrating.  We let one nurse go at the beginning of October.  There are certain things that one just should never do on the job.  We were able to fill in her 40 hours with another nurse who, incidentally, we had to let go a couple weeks ago.  There are certain things that one just should never do on the job.  Not nearly as bad as the first one, but I don't think I am being overly demanding when I say that my expectations for a home nurse include a certain level of alertness while on the job.  Between that and recently getting our nursing hours increased, it's been very difficult to get people in here.  We had a temporary nurse {her regular patient was hospitalized and she was in need of hours at the same time we were needing a nurse}, but as of today that isn't an option for us {her patient is home again}.  They are pulling in nurses to fill in the gaps.  We'll see what next week's schedule looks like, but it's going to mean that we have about 4 nurses in here, which ideally is not good for Peyton.

Sigh.

Nothing is ever easy.  And so it continues...

Patience

Patience is definitely something that has been needed in this first week of the new year.

Once again, we have found ourselves losing yet another 40-hour-a-week nurse.  She was going to be moving out of state soon, but certain events hastened her departure from her assignment with Peyton.  I don't need to go into detail, but the level of professionalism of some home nurses just astounds me sometimes.  We are still trying to figure things out.  We have one 40 hour nurse, but she is temporary.  She travels, so is probably only going to be around a few months.  We have a temporary 40 hour nurse who is assigned to another patient who is hospitalized right now.  Everything is temporary, it seems.

Peyton is still having a great deal of difficulty with her chronic pain.  Mornings are particularly bad.  On the whole, I think it has improved a little since I wrote last, but it's still bad at times.  Again...patience.  Patience to endure this season.

As you can see, this blog is being populated with past stories from CaringBridge which I have been copying and pasting.  I want to have the entire CaringBridge log of entries copied over to this blog.  I've only got about 300 more posts to transfer!  Patience!!  I've updated the design to make it a little more appealing.  It's temporary, but I still wanted it to look nicer!  I'm trying to figure out the perfect name for this blog.  If you have any suggestions, I am all ears!

Thanks for bearing with me during blog construction!

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!  

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!

Time For Another Opinion

I have been under considerable stress over the past few weeks.  It began with one of our nurses leaving.  She did maybe up to 16ish hours a week.  We were able to get a replacement in for her, but before the dust had settled, the nurse that does the bulk of the hours (up to 40 a week) decided that we were not consistent enough with our schedule, so was moving on to a new patient that the agency was bringing in.  Despite the fact that our schedule was made to suit her and still cover our needs, it wasn't good enough, so she is pretty well out of the picture now.  That said, now we have to get a nurse to fill in most of our hours.  A nurse who is an LPN oriented this week (Peyton's supposed to have an RN, but this nurse is allegedly approved for complex cases).  I'm not 100% sold on her, but got the impression we should give her a try - perhaps there are no other nurses available at the moment.  Still, I'd prefer to have an RN, particularly if she's going to do most of our hours!  The first nurse who left is actually able to pick up a few hours again, so that's great.  One of our former nurses is also coming back to do a few shifts a week, so that's good too.  All this is good, but this means 4 nurses in and out of here, which isn't ideal, but what can you do.  

I was so excited about getting the one nurse back who had left a few weeks ago, even if it's just for a shift a week.  Also, the nurse who came on board after that one left - I'm really excited about having her here as well.  Both of them go to our church!  Both are really awesome ladies.

Nursing drama aside, today I took Peyton to the orthopedist.  She's had a lot more pain lately.  I know things are hurting her and I know she is getting worse from an orthopedic perspective, but I don't know what to do.  From the moment the doctor entered the room til the moment he left, he was nothing but useless.  Condescending even.  He can't do anything and made no bones about it.  He suggested it's all a neurological issue and we need to get her in to see her neurologist and maybe they can prescribe something to keep her from moving so much.  Huh????  Drugs aside, he didn't even offer to have his office call neuro to see if we could get in sooner than what we're currently scheduled for.  We are having to give her motrin/tylenol every day - sometimes multiple times a day - for pain.  This did not use to be the case.  He wouldn't even offer a prescription for something different for pain.  Nothing.  I was furious and I was in tears by the time he left the room.

By the time we got home, I had already texted Ron to update him and we decided we need to move forward on something we discussed about a month ago.  We have decided it is time to get a second opinion.  Unfortunately this means traveling, which is really not something that we would even consider under any other circumstances right now.  We decided a while back to scope out the best children's hospital within reasonable distance and go there.  As it happens, Boston Children's Hospital is ranked #1 in the country.  You can read about that here:

http://health.usnews.com/best-hospitals/childrens-hospital-boston-6140270

They are ranked #3 in orthopedics.  Since we're talking about traveling that far, we decided we ought to get second opinions on other issues as well.  I had done some research last month and picked up the phone and called.  I first called the orthopedic clinic.  Peyton now has two appointments on August 13th.  The first is with an orthopedic doctor who specializes in growth.  The second is with one who specializes in upper extremities.  A lot of what we are dealing with is very lax muscles and joints that are bending the wrong way, hip dysplasia, low muscle tone, etc.  I cannot wait to have them take a look at her and see what they can recommend.

We also now have an appointment with the pulmonary clinic on August 14th.  Since respiratory issues are her main issue (outside of simply having whatever conditions she has), we want to have a second opinion - just to see if someone has any ideas.  I don't know if they will or not, but you never know.  By the way, Boston Children's pulmonary clinic is ranked #4 in the country.

Since the orthopedist was just trying to pawn us off on the neurologist, and since her neurological issues are a great source of the mystery that is Peyton, we also have an appointment with a neurologist at Boston Children's.  That department is ranked #1 in the country in case you were wondering.

I would love for genetics to see her too, but we'll leave it at that for now.  We actually are in the process of possibly seeing another genetics clinic here locally - I just haven't firmed anything up on that yet.

We'll start with these three specialties.  I have spoken with another mom whose daughter is a complex case - they take her to a few different children's hospitals for other opinions.  This mom has very high praise for Boston Children's Hospital.  Honestly, every single person I have spoken with at BCH has been nothing but kind and personable and helpful.  I had one woman tell me how impressed she was with me.  So far, I'm extremely impressed with what I've heard from this other mom and what I've experienced via phone (and I've only dealt with support staff so far!).

It's going to be a tough trip!  We haven't traveled with Peyton in almost 2 years since my mom passed away.  It's so difficult to even comprehend what traveling with her would be like right now.  I will say this - just because we are making this trip, it does not open up the possibility of a regular family vacation anytime soon.  If it weren't for the medical "necessity" of this trip, we wouldn't be going anywhere with her.

So, I'm going to ask for prayers for this trip that everything comes together for us to be able to make this trip (there are a lot of pieces of the puzzle which need to come together).  And then prayers for Peyton's health that it remains perfectly stable for the duration of this trip.

I'll be keeping you updated.  Peyton does see the neurologist here before August, but it's not for another 5 weeks.  We'll see what he says about everything.

Things Are OK

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

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

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

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

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

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

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

A Week Or So of Updates

Fortunately, there's not tons to report but a few things have happened in the past week or so.

The week before last, Peyton saw the Pulmonary doctor.  We're still concerned about the junkiness she has.  The doctor has her back on an antibiotic which will last for another week.  Oh joy.  She still sounds just as junky.

Last week we met with the Geneticist to go over results from the test that had been done when Peyton was in the hospital back in July - the on that might indicate whether or not Peyton might have a specific form of Muscular Dystrophy.  No news.  The first part of the test showed nothing.  The second part will take another 6 weeks.  Great.

I had surgery on my elbow on the 26th, making me unable to lift Peyton.  Our nursing hours were set to decrease to 40 hours but we managed to hang on to the paltry 56 hours we were given through 9/10/11.  THEN they drop to 40.  I'm not happy.  She had 84 hours a week in June then was cut back to 70 in July and then a few weeks later down to 56s and now it's about to be 40!  It's HORRIBLE. Read up on that situation over on my blog here:

http://fontenblog.blogspot.com/2011/09/being-flexible_04.html

And, last but not least, Peyton is in the hospital.  Oh joy.  Her whole GJ tube came out early last night.  She was admitted because it was Sunday and no one from interventional radiology is in on the weekend and they weren't paging them to come in either.  I should say, they spoke with IR, but they weren't coming in!!  We were very concerned about her being able to have it done at all even today because it's Labor Day!  Good news - she's about to have it fixed.  

What a week.

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.

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!!

Uneventful Week

Oh how I love when things are uneventful!!

This week, Peyton saw the ENT.  This was her only doctor appointment this week.  Within a space of 20 minutes, I had checked in, waited in the waiting room, saw the triage nurse, got put in a room, saw the ENT's nurse, waited for the doctor, saw the doctor, and was walking out with a paper with our 6-month follow up appointment already booked!  All's well on the ENT front!!

We had a special review for Peyton's schooling today.  We met with the special ed teacher and a few of her homebound education therapists.  Peyton had a decent school year this year.  She's been through a lot, and has regressed in some areas, but they're looking at her responses to people, and how she reaches for things and they think that she's shown definite improvement.  Of course, it's often on her own terms.  It's not where they'd like for it to be, but she's improved in her social interaction with them and that is great!  There is an extended school year which is at the school for a few weeks or so during the summer.  This wasn't offered to her for this summer.  The reason is really that Peyton has had the longest stretch EVER of school/therapies at home since she started school at age 3.  Even this year, there were lots of interruptions.  However, for the past few months, she's been doing relatively ok and has had more opportunity to have her teacher/therapists see her at home.  So, really, it was decided that she (like most people) just needs a break.  We'll convene again with the group to discuss her IEP for the next school year later in the summer.  We'll decide then if she's to be homebound or exactly how things will work for the next school year.

On the health front, Peyton's new antibiotics are giving her some issues with horrible diarrhea.  This has resulted in a nasty diaper rash which left her very out of sorts yesterday and not sleeping well at all for the past few nights.  She was much improved today, so I'm hoping she'll get a much better night's sleep.

We are finishing up this week with the current nursing agency and will be moving on to the new agency.  After speaking with the new agency this week, we are very much encouraged that we should be able to get her 84 hours a week staffed no problem.  One of the new nurses for Peyton, as it turns out, actually lives in our apartment complex!!  Not in our building, but very close by!  How nice is that for her?!  

I hope all my Canadian family and friends had a safe and enjoyable Victoria Day weekend last weekend.  Wishing my American friends a safe and enjoyable Memorial Day weekend this coming weekend!

Busy Busy Busy

Peyton has been 5 for a whole week now!  

Peyton has managed to stay ER-free since May 3rd!  This is somewhat of a milestone in and of itself.  Prior to this, we were showing up at the ER every 2-3 weeks!  Big praises to God for allowing this bit of peace in our lives!

This past week has been quite busy with lots of appointments.  I'd like to say we're through with appointments for a while, but we're not. Here's an update on what's new with Peyton:

We saw a new doctor last Monday.  This one is an "Infectious Disease" doctor.  The pulmonary clinic had consulted with him a few times on Peyton's medicines for her respiratory infections, so he offered to see her himself.  The thrush we've been treating for a few months, according to him, is not thrush!  I'm not sure he knows exactly what it is, but he knows what it's not.  We're no longer treating for thrush.  It could just be a nasty coating on her tongue from all the meds she takes.  As for the treatment for her respiratory illnesses, he's made a change.  The pulmonary clinic had already taken Peyton off of the one antibiotic which was clogging the tube.  It was changed to a different one.  She is also on a second antibiotic.  Has been this whole time.  The ID doctor has taken her off of that one and put her on a new one.  So, she's on two new antibiotics now.  She's taking zythromax and zyvox.  If she starts to show some improvement in the next four weeks, she'll continue on this treatment plan for a few more months.  What's a few more months considering she's been treated on double antibiotics continuously since February 2nd.  If there is no change, we'll stop the antibiotics altogether, as we would have basically determined that the bacteria we are trying to treat with these antibiotics is probably not what is causing her to get so sick.  She's been on the new drugs (combined) for nearly a week.  The only change I'm noticing is in the form of horrible, nasty diarrhea. She's spent the better part of the last year and a half on antibiotics, and this has become a way of life...but this...this is worse than anything she's had in a while.  Poor Peyton.  Hopefully it will improve in time.

On Thursday, Peyton saw the GI doctor.  She's in the 43rd percentile for weight, weighing in at just a little over 38 lbs.  There's no muscle to that weight.  What "excess" there is is in the form of flabby little upper arms, a face that's rounding out, a belly that's getting bigger, etc.  Don't get me wrong...Peyton is NOT FAT.  Far from it.  We discussed her weight.  It's been stable for the past little while, which is good.  We don't really need for her to be gaining weight right now.  That doesn't benefit anyone.  The doctor is happy with where things are at from his perspective, but suggested that if her weight increases a bit, to cut back on her pediasure by half a can a day and replace that volume with water or pedialyte so she doesn't lose the fluid intake.  For now, we'll keep doing what we're doing.

On Friday, Peyton had her 5-year check up with her pediatrician.  It was relatively uneventful.  It resulted in a call to the genetics clinic to discuss some possibilities with the doctor and how to go about testing.  This has to do with one of my prior posts where I had said that there was something brewing.  I'll keep it under wraps for now, but might involve some Genetics testing (if possible) in the form of a muscle and/or skin biopsy.  After speaking with the geneticist, I'm not sure what she'll have tested (if anything), but he's going to see her on June 1st rather than wait til our previously scheduled appointment in September.  As for the 5 year check up, all went well.  The doctor had recently traveled to Lourdes, France with a group of "malades" (pilgrims) to visit the shrine there.  He'd actually talked with us prior to all of Peyton's serious illnesses of late about going on this trip.  It would have been last year's trip, I believe.  Peyton just couldn't go - the people who determine eligibility for the trip felt it probably wasn't in her medical best interests at the time, since she required certain equipment.  Now a year has passed and, while we'd love to go, unfortunately I'm sure it's not even an option with everything we're dealing with now.  Anyway, the pediatrician told me that some of those people were asking for Peyton and they prayed for her at the Grotto, which was really special.  He gave me a little bottle of holy water from Lourdes for her.

We will start out this coming week with a visit to the ENT Monday morning.  Should be fairly straight-forward.  This is an area where we could get into "things which we don't want to get into".  When Peyton was at her worst over the summer/fall, Ron and I made some decisions with respect to her treatment plan/care which meant deciding to NOT do certain things.  One of those things is a trach.  There are a few surgical options which *might* potentially help Peyton - they all would involve a trach.  Not doing it.  Those decisions are fairly personal and they were made with much thought and with Peyton's best interests in mind.  So, as for the ENT visit, I expect him to NOT go into surgical options, because he knows what our decisions are.  I expect him to check her ears, nose, and throat.  I expect he'll say the tubes look good (as no other doctor recently has indicated they are anything other than "good").  I expect he may reference her sleep study which she had a few months back.  Maybe we go over that.  Maybe we discuss how the bi-pap is going.  I expect we'll be on our way fairly quickly.

This week ahead is our last week with our current nursing agency.  We'll move on to another phase on the 31st when we do the admission with the new agency.  I've got an email in to them to see if they have an idea of what our first week will look like in terms of staffing.  Prayers are very much appreciated for this!!

We also have Peyton's IEP meeting with the school, so we'll see how they think she's doing and what our summer plan is.  School is out on June 3rd!  That sure crept up on me quickly!  June 1st is the aforementioned genetics appointment.  Back to the ID doctor on the 6th.  I think after that we might just catch a bit of a break from doctor appointments!!  There always seems to be one or two times a year when we're just overloaded with doctor visits.  April/May has been one of those times.  Glad it's winding up!

Will update on how those last few items turn out.  Praying for improved health for Peyton now that she's settling into these new antibiotics.  Praying for some rest for her (she's not sleeping well) and for me (I'm not sleeping well)!

Plunging Back Into Reality

Time for an update on Peyton.  It's been a few weeks!

Well, for the first time in about four and a half years, Ron and I got out of town...on our own....for a few days!!!!  I can't even begin to describe how much this break was needed - for both of us individually and as a married couple.  Truth be told, it's a crying shame that it has taken this long to get this bit of respite.  We needed some "us" time to regroup.  They say that 85% of families with special needs children split up.  85%.  You can't even imagine how much we want to stay in the 15%.  If you have a special needs child, perhaps you are in the 85%, and just know that my heart and prayers go out to you.  I can't imagine how you do it.  If you don't have a special needs child, it may be impossible for you to even imagine that this can happen, after all, marriage is a commitment, hard work, but worth it, etc.  It may be unfathomable that this could happen.  Thankfully we're not (and have never been) at the point of considering a split.  That said, I can totally see how it happens.  Totally.  So, once again, I can't even believe it took us this long to get this respite.  Now that it's over, trust me, it's not going to be another four and a half years til it happens again.

Ron and I left on April 29th (our 11th anniversary) for Gatlinburg, TN.  We stayed a couple nights in Sevierville which is not too far from Gatlinburg.  The third night was spent in Gatlinburg itself.  We did a lot of sight-seeing.  The mountains are absolutely breathtaking.  I've always loved traveling to the mountains - any...doesn't matter where.  We spent the better part of the 30th at Dollywood - yes, the amusement park of Dolly Parton's.  It was quite a lot of fun.  We had a blast.  It really took us at least two full days before we really started to decompress. By that time it was nearly time to come back.

I missed the kids tremendously.  We had round the clock nursing set up for Peyton, and my dad came down to visit and he looked after Moira.  I can't express enough our appreciation to all involved in making this happen.

Our frames of mind were different when we came back.  We felt somewhat refreshed.  Still tired and whatnot, but we got back a little bit of ourselves in that time.

We returned on the Monday and everything was fine.  Woke up Tuesday and began the day as usual and then it was like everything came crashing down in on me.  Why?  Oh, if you've been following this blog for any amount of time recently, you may have a clue.  If you follow me on facebook, for sure you know!  Peyton's tube was clogged.  Right off the bat.  Before Moira even left for school at 8am, I knew I was taking Peyton to the ER.  Again.  Everyone around me can attest to the fact that I was beyond upset, frustrated, angry, etc.  It was like our respite was a dream.  Like it never happened.  Like we could have saved ourselves a lot of money and not left, because in an instant everything was as stressful as ever.  I felt like God was just taunting me with a nice getaway only to have everything revert back to the horribleness of tube clogs and ER visits in an instant.  Ever feel like someone's just playing a cruel joke on you?  And sitting back laughing while they watch your reaction to the attacks?   Yeah, that's how I felt.

So here it is: if EVER my own life depends on a feeding tube, you can just forget it.  Unless they come up with a better solution....forget it.  As for Peyton, it is what it is and we will persevere because it is for her benefit that we do all of this.  But, my goodness, if ever there was an invention that had such amazing benefits on the one hand but horrible potential side effects on the other.

Prior to our trip, we'd gotten our nursing schedule for May, and, again, it had more holes than a hunk of Swiss cheese.  Since our return, we have been dealing with trying to get things straightened out.  To say it has been stressful and frustrating is such an understatement it makes me laugh.  Everything we're trying to do is to ensure that Peyton is getting the medical support that she needs at home so that she doesn't wind up back in the hospital as much as she has been in the past year or so.  If that's not happening, then she's not benefiting.  If she's not getting what she needs, then it's not giving me the respite I need at home on a daily basis.  That, in turn, does not do Peyton any good.  Everything about the schedule we need is about what is best for her - because it works - because it meets her needs.  When the schedule doesn't happen as it should, none of that happens.

Please pray for us.  We've been back a week and a half and I know my own stress level and frustration is absolutely sky high and beyond.  It does no one in our family any good to have even one member of the family feeling like this.  I keep hoping and praying that everything will work out.  I'm still hoping and praying.

Next time I see a Carnival cruise ship docked in downtown Charleston, I may just become a stowaway!!  Just for a little bit! :)

In good news, Peyton had an eye exam under general anesthetic last week and that went as well as we could expect.  Her prescription didn't really change, and the doctor is encouraged that there has been slight growth of her eyes.

I have another potential piece of good news...but I need more info and will post on that later.  A few know what I'm referring to and if you do know, then just know there's no development in that area yet.  I'll leave you all with that little teaser!

Not much else going on.  Isn't that enough???