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.

Weary and Ready to Be Home

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

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

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

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

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

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

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!

Setback

We had a bit of a set back in our plans yesterday.  Peyton had been going so much better - not 100% but better - Sunday and Monday.  She woke up Tuesday, however, and it was the exact opposite.  She had a fever, was really junky, and just not feeling well at all.  Fortunately she had a pulmonary doctor appointment.  This is the appointment that everything for our trip to Boston was hinging on.

The doctor checked her out.  There were enough concerns to warrant putting her back on the two IV antibiotics - for two weeks.  Great for Peyton.  For me....well, it's been exhausting for the past several weeks...what is another 2 weeks gonna hurt, right??  Oh Lord.

We talked about this trip to Boston.  His feeling was that if she seems to be doing "ok" in the next day or two then we should be alright to go especially since she's going to be on these antibiotics still.  He was actually very encouraging and supportive of our plans to go up there.  I felt like he was saying that we have this narrowing window of opportunity to get up there to hopefully get some answers, so we need to try to do whatever we can to get up there.  

This morning, Peyton seems to be starting out the day a little better, so that is very encouraging.  I guess I will start pulling things together for a trip north!!

Thank you SO much for all your prayers and support.  I really mean that.  It makes such a difference.

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!

Update

Things have been relatively quiet here since I last posted.  No sudden middle of the night trips to the ER for a clogged g-j tube, or for any other reason for that matter!!

Peyton was scheduled for an eye exam under general anesthetic a week or so ago.  However, that was the day she decided to have a temp of 102.  It was cancelled and moved to March 17th, so we have that to look forward to next week.  

Yesterday we saw the pulmonary doctor.  It went well.  No big changes at all.  We're just to keep on doing what we're doing as far as those antibiotics go.  We did get the one antibiotic switched to a different form which has helped out immensely with the g-j tube getting clogged.  We had made this switch about a week ago.  I let the doctor know and he is happy that it is working out.  It looks like Peyton will be staying on the antibiotics for the long haul.  We go back to the pulmonary clinic in 2 months, so that's another 2 months of antibiotics.  She's developing thrush in her mouth from all the antibiotics.  Two rounds of oral nystatin did nothing, so she's now on another antibiotic to target the thrush.  That makes me happy.  I don't care much for the oral nystatin as we have to be so careful to not let any get swallowed - we use those oral swabs to swab all around inside her cheeks and tongue.  Glad to be on a different form.

We went to the semi-annual "biggest waste of time" genetics appointment today.  Why do I call it that??  Because the very advanced testing she had done at Texas Children's Hospital in her first two years of life (we moved here when she was two and a half) is far more advanced than anything MUSC can do.  The doctor spoke for a bit and basically said, "Yeah...it's some kind of genetic disorder...."  Great.  Thanks.  Same answer as last visit....and the visit before....and the visit before that.  I really wish Peyton was well enough to travel so we can go back to TCH and see her old geneticist.  Who knows, perhaps we'd get the same answer there, although so much has changed in the past year, I'm certain (based on past experience) that the doctor would be sitting with us for a long time discussing her case.  It makes me wonder if there's any testing available through TCH that isn't available here.  Ugh.

Disney World with Moira was fantastic!!  You can read about Moira's birthday here http://fontenblog.blogspot.com/2011/03/happy-birthday-moira.html and you can view pictures from our trip here http://www.facebook.com/album.php?aid=277941&id=690215792&l=6d1cf09192
Aside from this, we're still trying to get Peyton's full 84 hours of nursing each week covered.  I figured February would be a challenge since that's when the increase happened.  March....well, I thought we'd have a little more coverage.  Here's hoping that we're able to get closer to 84 hours in April.  We're currently running about 10 hours or so short each week.  We got pretty close to 84 once or twice, but generally not.  We're also still waiting to hear back to see if we have continuous coverage for the end of April so Ron and I can get away for a few days.  Hard to make plans when you have no clue if you'll have the coverage you asked for over 2 months ago.  Makes you wonder why there was the urgency to let them know the dates we were needing coverage for.  

Please keep us in your prayers.  Things have been incredibly stressful and frustrating in a few areas of our everyday life.  Disney was awesome, but can only imagine how much more awesome it would have been if I wasn't so completely exhausted.  All I want to do is sleep.  I am so tired and worn out.  I feel guilty for the state of my house constantly - it looks like the people who live here just don't give a care.  I care...trust me...I just have ZERO energy.  I feel like I'm so far behind on sleep that no amount of napping will ever catch me up.  

I will keep you posted on Peyton's eye exam next week.  It should just be a routine thorough exam, although there's always the possibility that something has to be done.  One never knows!!  

As always, thanks for your prayers!