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!  

An Outpatient Update

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

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

Anyway...

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

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

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

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

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

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

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

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

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

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

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

I will keep you posted on how this week goes.

Back In A Room

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

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

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

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

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

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

We appreciate and thank you for your prayers!

The Latest on Peyton

As I mentioned last time, the big goal was for us to get to Monday (yesterday) to see if Peyton would finally turn a corner with the two IV antibiotics that she is on.  I did see a little improvement in her on Sunday and even Monday for a short time.  I even emailed the pulmonary clinic's nurse practitioner and explained how things were going.  And then Peyton started with a low grade temperature...again.

Today (Tuesday) she was extremely fussy all morning.  No temperature today though.  She's wavering back and forth between being sick and being pretty sick.  There's never a point where we say, yeah, this is it, she's on the upswing now!

I've said to Ron and to others that we really need to see an absolute answer to the situation.  She either needs to improve significantly enough so we don't have to worry about making the trip to Boston in 11 days.  Or she needs to get sicker so it's clear we should not go.  Obviously we don't want the latter.  We just need for the decision to be easy - that we won't leave home second-guessing our decision - or stay behind second-guessing what might have been either!

The hardship of this week has really gotten to us.  I admit that very candidly to you.  Having a 2/47 caregiving role is not easy.  I am not superwoman.  I am not supermom.  I don't have an endless energy reserve from which to draw on.  I sincerely wish I did.  The fact of the matter is that this IV med schedule is so incredibly taxing on me.  I am pushing myself beyond my limits at this point.

Does Peyton need to be in the hospital versus being cared for at home??  Well, that is the big question right now.  To look at her, you might just say no.  Bear in mind, most "normal" sick people aren't on IV antibiotics, much less TWO of them to cover an illness...especially at home!  For Peyton, this is not the absolute sickest I have seen her.  For Peyton, she is not the healthiest I have seen her.  She's been sick for probably close to a month/month and a half now.  She has the advantage of having a port, which means she CAN have these meds at home and not in a hospital.  But having a port is not without its difficulties, as I've shared before.  She was just in the hospital a week or two ago because of a port issue.  

She's sick and she needs to get significantly better for us to make this trip.  Would she be better served in a hospital at this point??   I don't know.  There are pros and cons to the hospital, just as there are to her being cared for at home right now.  The biggest factor contributing to us leaning towards having her admitted would be my sheer exhaustion.  Yes, we have home nursing.  But for whatever reason (and it's not an issue with the company...it's home nursing in general), the RN's who care for Peyton at home are NOT allowed to handle ANYTHING to do with her port.  That means I am STILL the one handling all of that throughout the day.

Want a recap on what this means for me right now??

6am - Make sure I'm awake enough to stumble to the fridge to take the meds out.

7:20am - Hopefully I've managed to grab a shower by this time.  This is when she needs benadryl (she has a reaction to the Vancomycin called "Red Man's syndrome" - not a true allergy, but requires she be pre-treated with benadryl).

8:00am - Flush and hook up Vancomycin (IV med) to her port.

9:15am - Unhook and flush. Hook up Tobramycin (IV med) to her port.

9:45am - Unhook and flush and heparinize her port.

Next round is 2pm, 3:20pm, 4:00pm, 5:15pm, 5:45pm.

Next round is 10pm, 11:20pm, 12:00am, 1:15am, 1:45am.

I have about 10 alarms set on my phone.  Last night I woke up at 1:15.  That would be the time I'd be switching over from the Vanc to the Tobra.  BOTH meds were still sitting on the bathroom counter.  Hadn't pre-treated yet either, so at 1:15 this morning I was starting the round that would have begun at 11:20pm last night.  The bonus was that I got to stay up the 30 minutes til 1:45 when I could actually start the Vanc.  That delayed everything else and caused me to have to push back the morning stuff too.  When my alarm goes off, if I don't turn it off, it goes off every 5 minutes.  I'd slept through my alarm going off every 5 minutes from 11:20pm til 1:15am.  THAT is how tired I am.

So, yeah, there is a certain advantage to Peyton being IN the hospital.  Right now, I'm not sure that what we'll do, but it's an option to consider.

Boston is 11 days away and we're desperately needing prayers.  Is this trip ABSOLUTELY necessary - of course not.  BUT...her orthopedist here basically wrote her off a few weeks ago and wanted nothing to do with the pain issues Peyton is having.  She is having REAL issues that needed addressed by someone...and it isn't happening here.  There is so much that could (hopefully) be made better for her if we knew what to do for her from an orthopedic standpoint.  It's a long story, but if she had more muscle tone and more control over her body, her core would be stronger and maybe it would improve her respiratory health even a little.  THAT is worth finding out about.  THAT is worth making the trip.  I am afraid that if we don't get to go I will always be left wondering "what if".  THAT makes it worth praying as hard as we possibly can for this to happen.  Peyton is worth every ounce of prayer we can pour out for her so we can do our best by her.

As it is right now, she is to remain on the IV antibiotics til Monday and we'll see what happens then.  She NEEDS to be significantly better by then.

We are so grateful for all your prayers and support.  Thank you!

*Note: I should clarify something.  The trip to Boston is when it is because school starts up on the 20th.  Moira needs to be back for school.  Peyton's in school, but "homebound".  Once school starts, we can't just take off for a week.  We cannot fly with Peyton - there is too much to bring that she requires.  I cannot drive by myself with her for so many reasons.  The logistics get much more difficult after August 20th.

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.

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!!

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??? 

Another G Tube Clog

Another day, another trip to the ER.

As I mentioned last time, I'm having to get up a couple times during the night to do Peyton's meds.  I hadn't yet gone to sleep when it was time for the four midnight meds.  I got halfway through and the tube clogged....again.  I worked on it with increasing frustration and tears for close to an hour and a half before going to Ron and telling him she needed to go to the ER.  

I wound up leaving home at about 1:50am.  Not much traffic between here and MUSC at that time of day.  Got to the parking garage in record time.  There was no one waiting in the children's ER waiting room.  We were back in a room in no time.  A resident was in to see Peyton right away.  The attending saw we were checked in before we even got back and she thought ahead and ordered the clog zapper stuff from central supply so that it would help reduce our wait time once in the ER.  Before too long, the clog zapper solution was put into her tube.  Unlike last time, the solution didn't go in easily, and it seemed like more wound up on Peyton than in her.  I wasn't sure it was going to work like it did last time.  In fact, after the hour passed (that's how long it has to sit for), the nurse came in to flush the tube.  It didn't flush.  She got a different syringe and tried again.  It didn't flush easily, but eventually the clog just popped out of the tube into her stomach and we were back in business.  We were out of there and on our way home.  

We got home at about 4:30am.  At that point, I'd been up for nearly 24 hours and was incredibly exhausted.  I changed Peyton, gave her her meds that she missed, posted by insight for the daily bible study I'm doing, and then went to bed by 5:00.  Woke up at 5:40 when my alarm went off, got up, showered, and got ready for the day...sort of.  I did what I needed to to help get Moira fed and ready for school.  The nurse arrived at 7:30.  I updated her.  Moira went to school.  I went to bed and slept til noon.  Still incredibly exhausted.  I slept for maybe another 30 minutes later in the afternoon before Moira came home.  The nurse left at 5:30pm.  Our 5:30pm-10pm nurse called out sick.  Hopefully she's back tomorrow.  We have the back to back nurses again tomorrow...hopefully.  I intend to try for a repeat of today - in terms of sleeping while the nurse is here.  I do NOT intend to try for a repeat of my night.  

Please keep praying for Peyton, but also for me.  My frustration level and stress level is at an all-time high right now.  It's like we keep waiting and waiting for things to work out and get easier...and they don't.  I just want to be able to give Peyton her meds.  Sounds simple enough, right??  Wish it were as simple as it sounds. 

Clogged

Last time I posted, I commented on the fact that January was over so quickly.  Here we are almost through February already!!

The past couple of weeks have been fairly quiet for the most part.  That's always a welcomed treat for us!  Today, however, was another crazy day!  Once again, Peyton's g-tube clogged because of the antibiotics she is on for the mycobacterium.  They are so thick and gritty.  There's granules in the suspension that just make a big mess.  Anyway, I tried for a while to free the clog and it just wasn't happening.  We got Moira ready for school and we all headed out the door, with me dropping Moira and Ron off on my way to the ER.  

I was not in a good frame of mind this morning.  It is so incredibly frustrating to have to deal with this.  I wish the worst thing about giving Peyton her meds was that she refused because they tasted bad!  Oral anything is not an option, so everything goes through the tube.  If the tube gets clogged, it's bad news.  At least her feeds aren't interrupted because they are through the "j" portion of the GJ tube.  The meds are through the "g" portion.  I KNOW there is so much to be grateful for.  I do.  I really do.  But today just got to me - and quickly.  Between the clog itself, the fact that I had no choice BUT to go to the hospital and face a potentially lengthy stay today, the fact that I am completely exhausted, the fact that the meds she HAS to be on are the culprit, the fact that I don't even know if they are even working, etc. - I just wasn't in a good place.  To a degree, I still am not in a good place.  My head is throbbing.  My neck, shoulders and back are hurting.  I've spent a good portion of my day (at home - not in public!) in tears.  I feel selfish saying this, but today I just wish I could have a "normal" day.  I mean a REAL normal day.

Anyway, on my way to the ER, I thought, you know, it's Tuesday and it's daytime - maybe the surgery clinic is open.  It's them that I have to contact about tube problems because they are the ones who had it put in.  Gastroenterology won't discuss tube issues with me even though it involves feeding.  Go figure.  As luck would have it, the surgery clinic was not open today (specialty clinics operate on particular days of the week).  However, the woman I spoke with did try to put me through to someone.  When she got back with me, she told me that she discussed the situation and was having one of the physician's assistants from peds surgery paged.  By this time I was over half-way to the hospital, so she said she should be able to get with me before I was having to park - ER and clinic are two different parking garages.  A few minutes later, I did get a call back from the same woman, who let me know that I was to head up to where the surgery clinic meets and have the registration desk page the PA.  At least this would save a lengthy wait in the ER.

For a walk-in, I didn't really have to wait long in the waiting room.  However, the PA was still rounding over at the hospital with the surgery team, so I did have to wait for her.  When she got to us, she attempted to flush the tube.  She didn't try the clog zapper stuff that the ER had used a couple weeks ago.  To be honest, I don't know that any clog zapper could have been injected into the tube because it was that bad.  The tube has to be changed out ever 3 months.  This one was due to be changed on March 7th, so she wound up calling radiology to see if they could work Peyton in for this tube to be removed and a new one placed.  It has to be done in radiology so they can watch on the screen to make sure it's going into the right spot.  They were able to take Peyton.  Off we went to radiology.

I didn't have to wait too long in the waiting room in radiology.  When Peyton was brought back, they took an x-ray to see the current tube's position.  Then the radiologist and a couple other people came in and began working on the removal/insertion process.  It's not a real quick procedure.  Fast enough, but it's a little involved.  Peyton did really well.  Apparently the old tube wasn't exactly in the proper position.  Not sure if that would have been part of the clogging problem - likely not - but it wasn't great that it wasn't where it should be.  The new one is in the proper position.

Best moment of the whole hospital experience (which had me home a little after noon - about 4 hours at MUSC)....when the radiologist told me I had to be more diligent about flushing the port!!!!  If there wasn't something in between me and him at the time he said it, he probably might have gotten the full effect of "the eye" that I was sure I must be giving him.  It was one of those moments where you look around and say, "Oh, excuse me, were you talking to me???"  Are you KIDDING ME????  As if between me and the nurses, knowing full well how thick and grainy those meds are, we're just going to put them through the tube and not flush with a decent amount of water???  In fact, we give more than we need to because of that!!  Not to mention the fact that there's about twelve times a day when meds are going through the port, getting properly flushed 
every single time!!!  Seriously???  I'm not being diligent enough????  If you've read this blog even once or twice, I'm pretty sure you get that I'm diligent when it comes to Peyton's care!!

Anyway....we got back home and went on about our day.  The nurse was here when we got home.  She took over while I went and grabbed a power nap.  

As far as other issues go, we don't see any particular improvement at all since Peyton began these antibiotics on 2/03/11.  Actually, in general, most people who come into the house have commented on how she's more tired than before, that she looks tired all the time, how she's not doing certain things in therapy that she was doing even a month ago, etc.  She's not "hospital" sick right now, but there's something different.  Can't put our fingers on what it is, but she's changed.  Even if it's not a huge, drastic change, she's changed.

So, when today happened, it was a clogged tube on top of the frustration of all of this.  There is so much uncertainty.  I don't personally feel like the antibiotics are going to have much of an effect on Peyton.  We see the pulmonary doctor on March 8th, I believe.  Perhaps at that time we'll know if Peyton is to continue on the antibiotics for several more months or if they'll just stop them.

With today's clog and hospital trip came a revised medicine schedule.  Why?  Because everything got delayed because she couldn't get her meds with the tube being clogged.  Why the problem??  Because she's on 14 different meds right now.  Because some are once a day.  Some are twice a day.  Some are four times a day.  With the antibiotics, antacids and iron supplments cannot be given within so many hours before or after the antibiotics.  She takes both antacids and iron supplements.  One antacid has to be given 20 minutes ahead of other meds.  There's a whole lot of pharmaceutical / gastroenterological mathematics that goes into making Peyton's med dosing schedule.  Everything is spaced over the course of the day.  You can't give some meds too close together, so you have to be sure you've got good spacing...for everything.  Now, because of the clogging issues, Peyton's being switched from the suspension formula for one antibiotic to the oral tablet that one would normally swallow.  Instead, we'll crush it up and "dissolve" in water.  Trust me, it's not going to dissolve fully, so it becomes another clog risk.  Maybe not as bad as the suspension.  We'll see.  So, remember, Peyton is on 24 hour continuous feeds.  Now we have to stop feeds 1 hour before this med is given (twice a day) and hold for until 2 hours after the med is given.  That means we only have 18 of 24 hours to feed Peyton.  We have to give her 4 cans of pediasure and 300 cc's of free water in 18 hours.  This means a rate of 69 cc's per hour. The absolute MAX the GI doc wants her at is 50 cc's per hour.  Riddle me that one!!  Increase the rate of the feed and we're risking more vomiting than she's already doing.  We're increasing the risk of aspiration that she's already doing.  Are you sensing my frustration????  Anyway, I've re-set the med dosing schedule and will now be up at midnight giving meds (assuming I actually went to sleep before then)...and 2:50 am.....SO much fun I can hardly contain my excitement at the prospect.  I'll be working on trying to shift the meds so it's not so horrible a schedule, but it will take time.  They can't just be shifted several hours ahead of where they are now all at once!

I'm having such a hard time right now.  We're in a series about "Joy" at church right now.  One week the message was so clear on how complaining can cause you to lose your joy.  Along with probably everyone else there that day, I said I was going to try to stop complaining.  Then we hear about how we are to praise God in all things.  Yes, we should.  I know it.  I do.  I just feel like during the past few weeks of this series on "Joy", most things in my life have been working completely against what I've been learning and loving about the series.  That, in itself, is so frustrating!!

On that note, I have to say I am SERIOUSLY looking forward to a quick weekend getaway I have planned.  Moira's 7th birthday is coming up on March 10th.  In an effort to give her some really good "Mommy-Moira" time, instead of having a big birthday party with all kinds of kids coming, we decided to do something special just for her.  My dad is traveling down here next week.  On Friday after school, he, Moira and I are driving to Orlando.  Saturday will be spent at the Magic Kingdom.  Sunday we come home.  Very quick trip, but it's much needed.  In fact, I would venture to say that right now I need it at least as much, if not more than she does right now!!  Ron has to stay at home with Peyton.  We have regular nursing hours, not overnight, so one of us had to stay behind.  Besides, even if they were overnight we'd have to have someone here locally willing to be a back up person trained and checked off in the event that something fell through with the nurse while we were away.

And in case you are feeling badly for Ron now....we did start talking almost a month ago about a getaway for just the two of us.  Again, my dad will come down primarily to watch Peyton.  We've been trying to get round the clock nursing coverage set up for April 29 to May 1 or 2 (no, we're not heading to the UK for the royal wedding...April 29th is OUR anniversary!).  We have a couple nurses who've told us they are willing to do the shifts over that time frame, but nothing has been set so far - hard for us to make plans when we don't know what's happening.  IF we can get this to work, it'll mean sacrificing some hours during the week ending April 29th and the following week, but it will afford us the opportunity to have a much-needed getaway.  IF we can get this to work, this will mean that Ron and I will GET AWAY TOGETHER FOR THE FIRST TIME IN FOUR AND A HALF YEARS!!!!!!!!!!!!!!!!!!  So...yeah...we are more than a little anxious to get the word that we have the coverage to go ahead and start planning.  Right now it's in the "I have a dream" phase...really not believing it will happen.  Hopefully it will become a reality.

Not too much else is going on for now.  I think that's about enough isn't it?!?!

Please continue to pray for Peyton...throw a couple in for me if you think about it!  Thanks!!