Hospital Life...Day 35

Today is Day 35.  If you missed yesterday's post, you can read that HERE.

Today Ron and I celebrate 13 years of married life.  He will be up here at the hospital soon and will be bringing a nice dinner.  I hope.  It seems like we are in for a storm tonight.  This isn't exactly what we'd had in mind when we were thinking about our upcoming anniversary a couple months ago.  I am so grateful for the husband that Ron is and for the father he is to our children.  We have faced some pretty serious challenges over the past 12 of those 13 years.  We have faced far more than people our age should have to face.  We've faced a lot more than many people face in a lifetime.  After 13 years, we remain together.

But this is about Peyton...

Peyton woke up sounding more junky than she has been.  On rounds, the doctors felt that it might be a good idea to get a chest x-ray because of how she was sounding.  Peyton is on two pretty "big gun" antibiotics right now, so the chances of her having a new infection would seem slim, but this is Peyton, so you never know what's going to happen with her.

As far as pain control goes, I think Peyton is in a better place now than she has been.  It is good to see her more comfortable.  She still has some moments of intermittent pain, but overall, I think things are improving.

Peyton did have that chest x-ray and the resident came in a while later to let me know that they were going to have Cardiology come in and take a look at her.  The x-ray showed that there seems to be some fluid around her lungs.  This is something that we've been fortunate to not have happen so far.  For now, Cardiology is increasing one of her current meds to see if it helps reduce the amount of fluid.  Hopefully that helps.

There's always something.  Just when you feel like you are making some ground in one area, something else comes up.  As always, we appreciate your continued prayers for Peyton!

Today's Update

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

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

What does it mean?

I don't know.  I really don't.

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

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

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

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

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

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

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

In Sickness and Frustration

The past 24-36 hours with Peyton has been concerning to us.  I will say up front that she is at home - not in the hospital, so that's good news, right?!  I've talked about how she is requiring oxygen during the day while she's awake.  This has been going on over the past 2-3 weeks.  This is unusual for her.  There's no known reason for this to be happening.  From time to time she will manage to remain on room air, so that is good, but mostly she is requiring oxygen.

For the past day or so, however, she has had lower oxygen levels and a higher heart rate.  The heart rate began increasing further this morning and early afternoon.  It's typical for her heart rate to be in the one-teens but it's been in the 120s.  That's not so bad.  A little high for her, but not horrible.  This morning right off the bat it was in the mid 130s-140s.  It got up into the 150s.

Today was a frustrating day of "hurry up and wait" while I exchanged emails with one clinic {Pulmonary} and then another {Cardiology}.  She's not "sick", although she's had a bit of a fever today.  She's not exceptionally junky sounding - no more than "normal", but she's been on antibiotics for the past week just in case something was brewing.  Some of these symptoms were present last week when she went to the Pulmonary clinic.  It's just that things have worsened a bit over the past day or so.

The nurse practitioner in the Pulmonary clinic relayed messages to the doctors and got back with me.  They think that it's possible that the low oxygen saturation is possibly caused by mucus plugs in her lungs or atelectasis.  Please don't freak out when you click the link and suddenly see the words "partial lung collapse".  Read further where it refers to mucus plugs.  She does not have collapsed lungs, partial or otherwise!  As for the heart rate, they suggested getting in touch with Cardiology.

I wrote up yet another email and submitted that on MUSC's online system.  And waited.  I honestly wasn't sure I'd hear back today.  All day long, I was expecting to have to bring Peyton to the ER but by this point I was thinking we probably wouldn't be going.  In the end, the Cardiologist did email me back but he didn't think it was anything related to her mitral valve issues.

Frustrating day.  One specialty defers to another and that one defers back to the first.  In the end, I don't know that we got anywhere.  Peyton's issues remained throughout the day.  Pulmonary did suggest that being on BiPap would be the one thing worth trying to help with the oxygenation issues.  We haven't had much luck at all with getting her on BiPap lately, so I wasn't sure what we'd do.  However, between the nurse and I, we got her on BiPap and she stayed on for maybe about four hours total - portions of that time were enve while she was awake!

As Peyton is about to go to bed now, she's got a low fever still, her heart rate is up, and her oxygen is a little lower than normal, but her monitor isn't alarming...yet.

As for our nursing issues, we are getting our hours but they are piecing together several nurses to make it happen.  Great to get the hours, but it probably isn't in her best interest long term to have so many people in and out of here, especially when some work in hospital settings as well and others have other patients that they work with in their homes.

Please pray with us for healing for Peyton and for a good resolution to the nursing issues.  I'll keep you posted on how things go here.  As I said, it was a rough day.  I feel like this will just continue until we finally just have to bring her to the ER regardless of what the specialists thoughts on the matter are.

A Very Long Overdue Update

I last updated Peyton's CaringBridge page on November 9th!  In this blog construction phase, I have actually gone ahead and put in the most recent couple updates from CaringBridge into this blog so you can easily refer back to those.  As I said in my welcome post, it's going to be a while before this blog is completely populated with the entire contents of that CaringBridge site.

I mentioned last month that things were fairly frustrating with Peyton.  No.  That's probably not the right word.  More like overwhelming and exhausting.  There's been so much happening.  I'm simply exhausted right now.

Peyton has not really returned back to her base line since she was sick and hospitalized back in September.  Forget the 17 day stay in October.  She's just never fully bounced back since September.  She's not lethargic like she was, but she doesn't have a whole lot of pep.  She is increasingly inactive.  Her hip pain is increasing in the past couple weeks.  It's heartbreaking to see her in so much pain and not be able to do something for it.  She's on meds, but they aren't working as well as they need to be.

Peyton has had the worst diaper rash for quite some time now.  It is an angry red at times.  Bleeding a bit at times.  Very painful to look at, so I can't imagine how it must feel to Peyton herself.  Just when we think it's resolving, it flares up again.  I think her skin is just so ultra sensitive to anything that touches her bottom that it's literally tearing her skin up.

At the end of November {the 26th}, Peyton had another "episode" at home where she decided that breathing wasn't absolutely necessary.  She began to turn grey/blue.  She came around fairly quickly {less than a minute}.  We took her to the ER where they did absolutely nothing but eventually send us home.

Peyton had a Cardiology appointment back on December 7th. I have to say that in Peyton's 6.5 year life, this was the very first appointment of hers that I have missed.  I was sick that morning, but she had to go.  Ron took her - all on his own!  Well, with the home nurse, but he did it!  Everything is pretty much status quo in that department.  She will go back in a couple months.  They will do another echocardiogram to see how the mitral regurgitation and heart murmur are doing.  So far, the idea of doing a heart cath is still just an idea.  No plans for one at this time.

A couple weeks ago, Peyton started to get junkier than usual. I was worried as we were heading into that particular weekend that she was about to have to go to the ER.  I contacted the Pulmonary clinic and we were able to start Peyton on a 2 week course of antibiotics to hopefully stave off any major illness.

I mentioned previously that we had a sudden unexpected issue in our home nursing situation.  That was closing in on a month and a half ago.  In a nutshell, we had to fire our home nurse who was doing 40 of the 56 hours a week that Peyton gets.  I won't go into details here but we went through a challenging phase after that.  Scrambling to get nursing coverage.  Not having enough hours to begin with.  That's another blog post in and of itself.  However, God provides.  I wrote about a little Christmas miracle we received over on my personal blog.  You can read that post HERE.  Long story short - we now have 84 hours a week of home nursing care!  I do, however, encourage you to read that post!

During Peyton's last hospital stay {those 17 days in October}, you may recall that I was in constant contact with her Geneticist up at Children's Hospital Boston.  He has been an amazing asset to Peyton's medical team.  He had multiple conversations with Peyton's physicians while she was in the hospital and he has also been in touch with Peyton's Neurologist here at MUSC lately.  In the past month, he has called me himself to discuss various updates.

While we've been going about our business here, the Dr. T. in Boston has been discussing the case with other doctors up there as well as her Neurologist here.  Here is what we know:

* We still have no diagnosis;
* Because of some very specific tests that have been done in the past couple months, we do know that Peyton is severely copper deficient - as in, almost non-existent;
* Peyton's case is exceedingly rare - so rare that she may be "it";
* There is no protocol for treatment because of the rarity of Peyton's condition;
* You don't just "get" copper supplements.  It's not like grabbing some iron pills from the pharmacy;

All of that said, and leaving a whole lot of detail out, in a nutshell, Peyton is likely going to wind up being a research study in and of herself.  We are filling in paperwork to have our family enrolled with The Manton Center for Orphan Disease Research.  Enrolling in this will enable them to place Peyton into a research program.  There is a specific gene that they need to look at.  I won't get into that now.  We all have to be enrolled because they may require samples from the rest of us {including Moira} at some point.  We've sat on this paperwork but I'm working hard to get it finished ASAP.

Dr. T. has been talking with various specialists, including a doctor with NIH {National Institutes of Health} who is apparently one of the world's experts in copper disorders.  This actually came about this week.  Dr. K. is in agreement with Dr. T. in having Peyton tested for this specific gene.  The issues with copper supplementation are namely that it is impossible to come by in the U.S. right now, and we don't know if it is even going to have an effect.  We have to weigh the potential benefits for Peyton with what we are willing to put her through - to what end.  Dr. K. has a research study that is on-going which involves copper deficiencies.  Not what Peyton has specifically - but there is the potential to receive supplements through this program.  Dr. K. is willing to talk with us and we can learn about this program and see if this is something we want to participate in.  If so, it's going to mean a trip to Bethesda, MD.

All that said, Peyton is going to require extensive testing before anything can be done.  She'll definitely be involved in research through Boston.  Whether or not we go to Bethesda has yet to be determined.  Peyton is going to require bloodwork, a lumbar puncture, and a skin biopsy at the very least.  There are specific enzymes that they need to examine.  Copper deficiency can have an effect on multiple organ systems.  We need to find out which ones and how they are being affected before any sort of therapy can begin.  As for therapeutic copper supplementation, Dr. K. feels that it is less likely to have an effect on Peyton given her age - it may be too late for this.  That said, it's something we should still consider. There are just too many unknowns.  Will it work?  What impact will it have on her?  I think there's a whole post just on describing what copper's effect on the body is.  I'll leave that for another time!

Right now we have a lot to consider.  It's looking like a Boston trip will happen in early Spring, perhaps.  There definitely will be one.  The Geneticist {Dr. T.} would like to see her, as will another doctor up there.  If we do participate in the NIH study, there will be a trip to Bethesda.  That would be so easily combined with a road trip to Boston.  The question is will the timing of things required for Boston and Bethesda line up to make that possible.

Please Lord, allow our vehicle to handle the possible multiple trips.  Allow things to line up so that Moira doesn't have to travel with us {which frees up space in our vehicle but, more importantly, frees her from the stress of having to deal with all of the "Peyton" activity that will go on}.  Most importantly, Lord, grant all of these physicians the exact knowledge and wisdom where Peyton is concerned so that they can do the exact right thing for her.  While you're at it, Lord, grant us as her parents the wisdom to know that the decisions we make on Peyton's behalf are exactly the right ones for her.

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.

Not Well At All

This morning, Peyton seems to be a little worse.  When I woke up, she was covered in multiple blankets.  Her temp was apparently low overnight (low 96's).  She's been wearing bipap continuously the last couple days.  She was going to be going down to xray, so she was switched to a nasal canula for transport.  When I took her mask off, we noticed her face was very puffy.  She's also pretty lethargic today and her mouth is pretty dry.

We went down to xray, which turned out to be a non-event.  Whatever was ordered was apparently called off for now, so after getting her all situated on the xray table, with oxygen tank and hooked up to the monitors, we had to get her back into her crib with all of that stuff to head back up to her room.

The doctors were by this morning.  While they were out in the hall, I had to suction Peyton.  What I got out was unreal.  Her secretions are SO thick they are almost solid.  There are mass quantities.  They are also darker yellow now.

She is not as well today as she was yesterday.  We don't know what is going on.  I am trying to be strong, but this is unreal.  I don't blame the doctors for not knowing what's going on with her.  They are doing all they can with what they know.  She's on 3 antibiotics.  She' s on IV fluids.  I don't know that there is more that can be done but I just wish we knew what we were dealing with!

Dermatology is supposed to come by to look at the rash on her hand.  Cardiology is now being consulted because of the edema (face/feet).  Infectious Disease is still weighing in.  GI is on board because of the bleeding from the j tube.  She's on the Peds service, although the PICU docs were there for her last week and they are aware of her being in the stepdown, not to mention that they were there for her endoscopy yesterday.  Ortho consulted regarding her dislocated shoulders.  Neurology has been involved as has Neurosurgery.  And Pulmonary is also involved.  That's 10 specialties in case you didn't take the time to count.  11 if you count the Dietician.

So, I would say that they are covering all their bases.  I wouldn't concern yourself with thinking that they aren't doing everything they can at this point!  :)

As always, I will keep you updated.

Our Home Away From Home

Can you guess by the title where we are??

If you guessed back in the hospital, you'd be right!

Since Peyton came home about a month ago, she's been doing better on her new pain meds.  That said, in the past couple weeks, she has been incredibly irritable.  Sometimes inconsolable.  It has had me to the point of crying along with her because I have no clue whatsoever as to how to help her.  Something is wrong and I can't fix it.  For that matter, neither can anyone else.  It absolutely breaks my heart to be in that position.

In addition to this, her home nurse and I had been noticing some symptoms which were unusual.  She has been waking up with puffiness on her face, mostly around the eye.  Fluid seems to be pooling on the side of her face that is "down" (she turns her head to the side when she sleeps).  It takes hours to resolve most of the time.  That's not normal.  Then the other day when she woke up, she had bright red streaks across the top of one hand and a few big blisters.  Not sure how/where those came from, but yesterday a brand new blister popped up on her pinky on the same hand.  One of the original blisters has gone down, but the red streaks are still there.  Then there are other issues, such as her oxygen percentage which is not always staying up where it should be.

Peyton's home nurse wrote up and nice synopsis of what has been going on.  She was concerned about it being a cardiac issue, so I emailed that to Peyton's cardiologist.  I also sent it a couple other places in case anyone else had any ideas.  The cardiologist actually called me yesterday morning.  Based on Peyton's latest echocardiogram done last month, he was not too concerned that it was a cardiac issue.  Not that it couldn't be, but he said based on the echo and what's going on, a cardiac issue wouldn't be in his top 3.  That said, he wasn't sure what could be going on.  He (as well as one other provider) suggested taking her to the pediatrician so they could at least order some labs to check basic levels on various things.

Since I had sent that email to the pediatrician's office, I just called them after I got off the phone with the cardiologist to see if Peyton could get in.  She has been having a particularly rough past couple days.  They were able to get her in right away, so as soon as I got off the phone, I busied myself getting her ready to go.  Our pediatric group has 2 offices - one close to home and one not so close.  They rotate the doctors through the one that is close to home as the other is their "main" office.  Our doctor was not at the close location, but in the interest of Peyton's condition, I took her to the close location.  We hadn't seen this particular doctor before, but she was very nice.  After examining Peyton and agreeing that she didn't look particularly well and that these issues were concerning, she thought we would be better served by going to the ER.  So she called the ER to advise that we were on our way.  We went home, grabbed some stuff (including the home nurse who, by this point, was arriving at home for her shift) and headed out.  Side note - the home nurse is able to accompany Peyton to the ER, but she has to clock out at the point at which they admit her to the hospital.  Up until then, she can be on the clock because it's just like going to a doctor appointment.

So we came to the ER where the waiting room was strangely busy.  It took a little time to get back to a room, but not horribly so.  They were ready and waiting for her when we got taken back.  We saw the doctor pretty quickly.  Labs were drawn.  She had a chest xray.  Then we waited.  And waited.  They were consulting with cardiology who essentially told them the same thing her doctor had told me on the phone this morning.  Then we were waiting on a neurology consult.  We waited.  And waited.  And waited.  Eventually we were there about 8 hours and we finally saw neurology.  Not her own doctor, but one of the residents.  He was very nice.  But when he recapped what he had been told, it turned out that one of the minor issues had been translated to him as THE issue for us being there.  You see, she's been pretty lethargic the past couple days - because she's not feeling well because of whatever's going on.  But that was translated to him as increased tiredness for days and change in mental status.  Both of which are true, to an extent, but the translation was far more serious than the actual situation. When we described what was going on, he basically said it sounds like she's definitely sick, but it's not a neurological problem.  May I take this time to point out we waited for 8 hours for this???  He did talk to the attending because it was his feeling like she should be admitted to have a general peds workup done.  

Yesterday was perhaps one of the most frustrating ER experiences ever. I don't know how many times we had to redescribe what was going on.  I understand that you have to do that.  Trust me...I've been through the ER enough times to know how it works.  But it's the retranslating the story when they a) aren't relating all the facts back to me...missing some of the key issues, and b) they main issues to us aren't the main issues to them (read: they are missing the point).  Then in the evening, the nurse, sweet as she was, asked us if Peyton was missing any meds for the day.  Um.  We've been in the ER for 9 hours now and your asking if she's missing anything??  Most definitely yes.  They had her 7 page list of home medications, as the ER always needs to have an updated list of current medications.  When she came back she said she had orders for 3 meds.  3.  THREE.  Peyton's evening meds consist of about TWELVE meds, not to mention she'd missed two during the afternoon that are only once a day.  Her pain meds and seizure meds were NOT among the 3 either.  After all that had transpired at this point in time, I was beyond frustrated.  Even when they have all her meds, the dosing (i.e. # of times per day) gets screwed up on some, but they didn't even have most of her meds listed.  She got her 3 meds down in the ER.  

Eventually the attending came back in to talk.  Bear in mind this is now a new one because the shift changed a few hours before.  He asked me to basically describe our biggest concerns about what's going on with her, in my own words.  Not so much as a way of translating the story to him so he knows what's going on, but just so he could appreciate my concerns and understand better where I am coming from.  So, I recapped what I felt was going on with her.  Then I said that I don't know what is going on - she's not "sick" necessarily, but I'm concerned that what's going on is either some sort of illness, or it is some sort of progression (decline) of her general condition.  I expressed that the changes we've seen are since a) she stopped breathing for a minute on September 9th and was admitted to the hospital, and b) they changed her pain meds while she was in the hospital in September.  I said I don't feel like this is pain med related because she was on one dose per day for 10 days and then began twice a day.  I said it's only in the last 2 days where we added in the 3rd dose per day (that was the ultimate goal).  However, the issues we're seeing started BEFORE the 3rd dose was started.  And she went for nearly a month on the meds with no problems.  I said that I have no clue what is going on and that I don't think that anyone we've talked to so far has any idea either, nor do they know what to do about it.  His response was that I was 100% correct.

So, I was given the choice of admitting her or not.  If we did not, then for sure nothing would be done and we'd just go home and experience all the same issues with no resolution, only to probably call certain doctors who have no clue or to wind up back in the ER one day.  Or we could stay put, take the risk of picking up a hospital-borne infection (always a possibility), but hopefully get some answers after she gets some sort of a workup.

It's so frustrating not knowing what's going on or how to help her.  It's frustrating that it's not just a simple illness that can be treated with antibiotics.  It's frustrating that doctors keep pointing to the latest change, which was the addition of the new pain meds, even though I don't think this is related to that.  What about a change in her overall status since she stopped breathing that time??  I hate feeling like I'm wasting people's time with something that isn't "real".  It's not my fault they don't have a clue!  

Anyway we are at the hospital and I am not entirely sure what is going on yet!

Take Heart

Peyton saw her cardiologist today for her follow up visit.  You can read all about that over here:

http://fontenblog.blogspot.com/2012/04/take-heart.html

DNA

Hi friends and family!

I have been sharing some of our story over on my personal blog rather than here.  I just wrote a post this evening about our trip to see the Geneticist.  I'd love if you stopped by to read it:

http://fontenblog.blogspot.com/2012/04/its-all-in-dna.html

Aside from this, Peyton has been having a bit of a challenging week.  She's not outright "sick", but she keeps having to wind up on oxygen during the day while she's awake, which is unusual for her.  Also, she seems to have a fair amount of pain on a daily basis.  Since she can't tell me, I don't know what that's all about.  I feel like her hips and shoulders are really bothering her, so perhaps that it.

We see the cardiologist next week.  She went a year ago.  She has a heart murmur and a mitral valve prolapse.  Praying that this is no worse now than it was last year.  I will update after that appointment!

Thanks for stopping by!

Cardiology

I mentioned yesterday that Peyton was to have her Cardiology appointment today.  She did, so here's a quick update on that.

Peyton had a 12:00 appointment with Cardiology.  When we arrived, the nurse said Peyton would be having an EKG and cardiac ultrasound and then we'd be seeing the doctor.  The EKG was fairly quick.  The ultrasound was 30+ minutes.  The room where the ultrasound was was like an oven.  I thought we would perish before we were through!  After that, it was back to the waiting room.

I'm not sure what happened while we were out doing the tests, but the population in the waiting area exploded and it was hard to find a seat!  We were sitting down a little before 1:00.  We were taken back and were seeing the doctor sometime just before 3:00.  UGH!  Once we were back there, things moved along quickly.

The resident came in first and then the attending.  Both assured us that Peyton's heart is not an area that we need to have immediate concern over.  She does have a murmur and a mitral valve prolapse as discovered before.  However, they are not to the extent of needing medication or other intervention.  Peyton's severe sleep apnea and having had over a year of continuous respiratory issues hasn't helped her, but she's not in any distress or having any acute problems.  For now, the Cardiologist would like to monitor her heart - see her back in a year.  He's not keen on the idea of putting her on any meds at this point in time.  She doesn't need them at this stage and she's already got so much other stuff going on that adding another med might cause more trouble than it is intended to solve!

So, it was a good appointment.  I like when that happens.  Praise God for a mostly-healthy heart!! 

New Tube

This is officially my last post having to do with "that clogged g-j tube"!!  Why??  Because "that" g-j tube is a thing of the past!  So here's what's happened in the last 28 hours....

At about 7:00pm Sunday, Peyton's nurse, who was in the last hour of her 12 hour shift, was administering Peyton's meds through the 'g' portion of the g-j tube as usual.  She got through a couple, and then something went wrong....again.  She felt something leaking and upon examination she noticed the problem.  I'll get back to that, but click on the link below so you can actually see what a g-j tube looks like:

http://www.radiographicceu.com/images/article_pics/picture17.JPG
The very upper left portion is the "port" end.  There are 3 ports: balloon, jejeunal, and gastric.  The tube is held in place with a balloon (I'll get to that).  The balloon is inflated using about 4.5 cc's of water.  The syringe attaches to the balloon port to either inject or withdraw the water depending on whether the tube is being placed or removed.  The middle port is the jejeunal port.  The feeding pump bag line is connected to this port and all her feeds travel down a thin tube within the larger tube to the jejeunum, which is beyond the stomach.  The third port is the gastric port.  You connect syringes to this port to deliver her meds through a separate tube within the larger tube where they travel and empty out into the stomach. 

Follow the tubing from the port end on down.  In real life, the distance from the port to that round flange you see is about 6".  The flange rests on the outside of Peyton.  It holds the tube in place from the outside, while the tube continues on into her stomach through the hole in her tummy.  Beyond the flange you will see black markings.  These measure the length of the tubing, so that flange piece actually tightens up along that part of the tubing.  

Beyond the black markings, traveling to the right in this picture, you will see a clear bubble looking thing.  This is the balloon I was referring to.  This picture shows it inflated.  This rests up against the inside wall of the stomach while the flange rests just opposite on the outside of the body.  So, in reality, that flange piece is MUCH MUCH closer to the balloon - probably less than an inch separates the two.

Everything you see from the balloon to the far right of the tube is inside Peyton's stomach and beyond.  The part of the tubing that is black looking is the part that has to be guided under fluoroscopy by interventional radiology as it is the part that is placed in the jejeunum, which is basically the upper intestines - bypassing the stomach.  The meds that are administered through the "gastric" port have an opening along the tubing just beyond the balloon so they can empty out into the stomach.  The feeds, however, go through the jejeunal port and continue along the full length of this tubing, emptying out at the end into the jejeunum, bypassing her stomach.  It helps significantly with her reflux and, in doing so, minimizes her risk of aspiration, or having what is refluxed wind up spilling over into the lungs, which can cause aspiration pneumonia.

So, that's the anatomy of the g-j tube.  I'm sure many of you may have been wondering what a g-j tube is, so there's your lesson!

Now back to what happened.  The nurse found the tube to be leaking.  That happened was she found a tear in the tube, just below where the ports are.  It was an "up and down" tear, as opposed to a "straight across" tear.  It was about a centimeter or so long.  The gastric tube within had ruptured and tore the outer tubing open.  This is directly as a result of the ER nurse's improper technique used to unclog her tube back on April 9th.  
It appeared that the jejeunal portion of the tubing was still working, so the feeds could theoretically continue, but we stopped everything and went to the ER....again.

When we got to the ER and were in the triage room, I told that nurse exactly what happened that brought us there, including the fact that I'd filed a complaint and how the physician's assistant in surgery wanted herself and the surgeon paged if we wound up back in the ER.  We waited a short time in the waiting room before being called back.

We didn't wait too long before we were back in a room, and it wasn't long after that when a resident was in - not a nurse - a resident.  Usually it's a nurse you'll see first.  She got all the details on what happened that night as well as what led to the rupture.  She explained what she would do to get things moving and away she went.  Not long afterwards, a surgical resident was down and he explained who his supervisor was and who the attending surgeon was and how they were all going to work on a solution and get us moving.  I was thinking, WOW, this surely has to relate to the fact that we were there as a result of a hospital staff member's incompetence.  We were getting VERY GOOD service.  That surgical resident left and eventually came back with his supervisor.  He came in a few times during our time in the ER.  The first ER resident was in a couple times as well.

Long story short, as we learned the time Peyton pulled her g-j tube out, interventional radiology is not in on the weekends.  Given it was now about 10pm Sunday night, they were trying to figure out how best to proceed.  Peyton had missed meds, was going to miss more that night, and was going to miss some in the morning, including seizure meds.  They decided amongst themselves pretty quickly that the tube had to be exchanged for a new one.  That was a given.  You can't fix the tube any other way.  However, trying to get someone from IR in on the weekend is very difficult and it was already so late on Sunday.  They decided that the best plan would be to actually admit Peyton so she would already be here and they could try to get her in to IR to have the tube exchanged as quickly as possible.  Also, I'm sure they're thinking she's missing meds and we need to figure out a way to get them to her or at least observe her since she could be without!  

Shortly after 10pm, the decision was officially made to go ahead and admit Peyton.  The home nurse had to leave at that point.  I stayed on with Peyton.  We had no plans to be admitted, I wasn't particularly prepared.  I figured we wouldn't be there long, so it wasn't the end of the world.

Being admitted winds up slowing a lot of things down - like getting meds.  At about 2:00 this morning (Monday), the nurse was in and was putting an NG tube down Peyton's nose - it goes down to the stomach, so her meds were to be given that way since we couldn't use the g-j tube for meds.  Peyton was NOT happy.  It was about this time her feeds resumed.  Those were resumed using the g-j tube as it was determined that it was safe to utilize the "j" portion of the g-j tube.

Meds got kind of back on track until this morning.  We knew she'd be having the tube replaced, so the big question became do we want to have to put the NG tube down at least 2-3 times based on the dosing schedule just to administer these meds, or do we wait til the new g-j tube is in so that it can be used for meds, and then just try to catch up again afterwards.  We decided on the latter, so her med schedule is off a bit now, but we're working on getting it back to where it was before.

The tube was replaced late Monday morning, but the whole discharge process took ages.  We didn't get home til about 3:30pm!!  A little crazy considering we knew from the get go that we were there to have the tube changed and be done with it.  We did have a question for the pediatrician there about a bump and redness on Peyton's head.  Well, turns out it isn't typical ringworm and isn't a typical fungal infection.  So, once again, Peyton has a little bit of a mystery going on. Since it is sort of cradle-cappish, they actually recommended using Selsun Blue shampoo on her to see if it helps.  Whatever meds they would prescribe for a fungal infection have so many interactions with the many meds she's on that it really wouldn't be worth putting her on it, especially when they weren't 100% sure of what they were dealing with.

Another perk of the visit was that a pharmacist actually came up and stood in the room while the doctor rounded with the team.  She stayed back and spoke with me afterwards.  She's the one who has been in much contact with the pulmonary team about all of Peyton's meds for her respiratory illness as well as the thrush that we've been treating for 10 weeks now that isn't clearing up fully.  She's actually going to speak with various doctors (pulmonary, GI and infectious disease) about everything that's going on, including all the g-j tube troubles and see if we can get her on some different meds which might be less troublesome for her and us.  She's going to be on antibiotics for the respiratory issues for months - we can't be winding up in the ER every few weeks with all these troubles!

So, at the end of the day, Peyton has a new g-j tube and is doing well.  People are actively speaking to other people on Peyton's regular team to see what can be done about improving our situation.  

A stressful day or so to be sure, but all's well.  The formerly clogged and potentially-turned-actually damaged tube is now gone.  She still has the tube, but it's brand spankin' new...and if it gives us any trouble, I'm gonna give IT some trouble!!! 

Peyton sees the cardiologist tomorrow....will update more on that tomorrow. 

If It's Not One Thing....

Peyton went to Texas Children's Hospital this morning for her echocardiogram. This test was the result of the past few months of frustration which began with the ill-fated trip to the cardiologist way back in February. The visit where I drove all the way out there only to find out they had no information on Peyton, therefore no appointment. After a lot of runaround, an echocardiogram was finally scheduled. Typically they will sedate the kids. Since Peyton has sleep apnea, this wasn't an option. So, I was already curious as to how this would play out today. In my heart I think I knew what the end-result of today would be. I should have just not gone and saved myself a lot of bother. After rearranging my schedule to have this done, well, wouldn't you know, they couldn't do the echo. Peyton was too fussy and was moving around too much to get anything accomplished. The tech was not pleasant at all and she made me feel guilty for not being able to keep my child calm. Well excuse me for having a seriously developmentally delayed child who is extremely sensitive to people touching her! The only alternative was sedation, but since the sedation orders were nixed, they couldn't do anything. Besides, with the feeding restrictions prior to sedation, even if they could do it, they couldn't do it today. I said she can't have the light sedation because of the apnea - that was why the orders for sedation were cancelled. I also said the reason she was having the echo was BECAUSE of the apnea. I said why the appointment was not scheduled to be done under a general anesthetic was beyond me. I was SO furious. I just sat in the lobby and cried and vented to Ron on the phone for a while before getting on the road. I should just expect by now that this is our luck.

So, on the drive back, I happened to glance back at Peyton to discover only one hearing aid in. First chance I got, I pulled off the freeway and did a thorough search. Nothing. I drove all the way BACK to the hospital. Of course, the garage was full, so I had to go to another and walk all the way back. I searched the area in the garage where we'd been. I went to the first floor reception. They hadn't had anyone drop off a lost hearing aid. I went to lost and found. Nothing. I went back up to the 20th floor cardio lab. They searched the linens. Nothing. I went back to the garage and searched again. Nothing. Of course, anyone I actually spoke with didn't seem the least bit interested so I wasn't able to leave my contact info. Hard to do when people just turn their backs on you and move on to their next bit of business.

So, after a horrible start to the morning in the echo lab, we're now down a hearing aid. And, yes, it is the SAME hearing aid which was already replaced. The warranty covers 1 replacement in a 3 year period. So, yeah, this one's on us.

In a continuation of this wonderful day, I'm off shortly to what will probably be Peyton's 3rd last therapy session for who knows how long, as the provider will at that time force us to pay $100 per visit (twice a week) in anticipation of problems with the insurance company. Nothing I say does anything to help. They are adamant that the insurance is going to pull the same stunt after 25 visits as they did last year when we wound up with over $1,600 in denied claims which still remain unpaid. According to my HR and the insurance company, 2008 claims ARE being processed in accordance with our plan and each claims is reviewed for medical necessity as we long-ago passed the 25 visit mark with this diagnosis (they review for necessity after 25 visits and then every visit after that is individually reviewed for necessity - it just happens that mid-Oct. through Dec. were denied and as of her first 2008 visit, all claims have been approved which just seems a little fishy). Anyway, again, nothing like the feeling of not being able to provide your child the things she needs.

I'm not having a good day at all and, in fact, am pretty much at an all-time emotional low where this is concerned. I'm just so tired of the runaround we get everywhere we go. I'm tired of things not being done that need to be done. I'm tired of so much more. But I have to wake up (insanely early) each day, throw a smile on my face, and pretend each and every day that life isn't they way it really is...because let's face it, sitting at my desk at work crying all day isn't really professional. And that opens up a whole other issue....maybe another day.

Why things have to be so difficult every time I turn around is beyond me. I just wish we could all get a break down here. Last I checked, I didn't think any of us did anything to deserve what life keeps throwing at us.

Appeals & Updates

I realized it has been quite a while since I updated this site, so I thought I would take a few minutes of my lunch hour to post an update!

Since Peyton got her chair, she has been really enjoying it. It's quite heavy and we still need to figure out a way for me to transport it without killing my back. I'm already going to the chiropractor 3-5 times a week, each and every week, so I'm not about to ruin all the good work he's been doing! She tolerates it for up to about an hour at a time, which is great.

The feeding with the special squeeze bottle/straw is improving. We've transitioned to pureed table foods. So far, her favorite seems to be a pear flavored yogurt blended with real pears. I tried chicken and broccoli, but that didn't go over real well. We just need to keep trying to see what she will eat well. She's not eating a great amount of food by this method yet, so we need to find something.

I am still working on getting letters from Peyton's doctors to support my second appeal for all those therapy claims that were denied. It's hard getting everyone to get you something by a certain time! I'm not optimistic about the appeal. I filed a complaint with the state, but apparently the state doesn't regulate self-funded insurance plans. It took them about a month to tell me that.

Peyton's therapy is going well, although they cut back by one visit a week in the hopes of making it further into the year before the insurance decides to stop paying again. They started paying again in the new year but they can review at any time. It's ridiculous. I can't give my child everything she needs for fear of insurance. Great feeling.

She had her appointment with her Neurologist on 2/28/08. It's always one of those visits where he's really examining her closely, but doesn't say a whole lot. In the end, we have a 22 month old child who is developmentally between 6-9 months of age. It was not an eventful visit.

Peyton was scheduled for an appointment with a Cardiologist on 2/29/08. However, when I got there, they had no idea who we were or what we were there for. Must have gotten us mixed up with the other Fontenot family who happened to sign in for an appointment with the same doctor at the same time. We still haven't sorted through that mess.

Peyton was to have her every-three-month eye exam done under general anesthetic (for her glaucoma) on 3/03/08, but in her pre-op assessment the week prior, she had a little bit of tonsilitis. The doctor decided it was better to postpone if we could. So, she had her exam done just this past Monday (3/17/08). It went well. Her pressures are on the low side, but nothing the doctor is too concerned about. The only thing he noticed was that her lower right eye lid is not flush against the eye ball as it should be. Probably a result of how she healed after having so many of those chalazions removed back in December. She'll likely have a consult with an occuloplastics doctor as it can result in problems with how her eye is wetting. We do see her regular Ophthalmologist tomorrow and we'll see what she has to say about that.

In the middle of all of this, my mother was diagnosed with breast cancer and subsequently had to cancel her trip down here to visit for Moira's 4th birthday. We were very sorry to hear of her news and hope she's doing well. She seems to be in great spirits as she awaits the treatment phase.

Never a dull moment in our family!

Happy Easter to all!

Sleep Study & The Future

Yesterday I called Peyton's pediatrician's office to make sure they'd gotten my fax with the sleep study report. The nurse called me back and left a message to say they had and that, oh, by the way, your appointment with Dr. x is scheduled for 2/29/08 and 1:30... My thought was what kind of doctor is this??? So, I called back and she said, oh she's a cardiologist. Well, I nearly died because no one had mentioned to us that Peyton needed to see a cardiologist! Since she had no information at hand about what this appointment was for, I had to hang tight and wait until the afternoon when the pediatrician came in.

Around 1:30, the doctor called me and explained that the doctor from the sleep study probably referred Peyton so they could establish a base line for Peyton's heart. As she explained to me, she (the pediatrician) had never seen a sleep study as bad as the one Peyton just had, and with central sleep apnea, over time there can be damage to the right side of the heart as there is extra stress from the lack of oxygen. Ok, so I can understand the visit now, but that issue had not ever been explained before so it took me quite by surprise.

That conversation then evolved into one about Peyton's future. The doctor said as much as you want to be optimistic (and we still try to be), she said the last few studies done on her recently have not been encouraging signs for her. We discussed how with no diagnosis of a syndrome yet we don't know what she has and, therefore, don't have a prognosis. I mentioned how the neurologist the other day had mentioned generally speaking that children with neurological impairments often pass away due to respiratory issues. So, you can gather where this conversation went. We just don't know what Peyton's future holds or how long she'll be with us. So, in the meantime, we'll just keep on doing what we're doing because that is what is best for Peyton. I always feel guilty about having to work while someone else takes care of her during the day. This conversation yesterday certainly did not help in that regard.

The doctor wants to get a few more specialists involved to see how we can help Peyton but she's afraid that Peyton's development may not improve much more beyond where she is right now. She said that any positive things that are happening (like the feeding I mentioned the other day) should be considered little miracles for Peyton. I keep hoping that one day she's going to sit, crawl, stand, and walk, but I have felt for a long time now that walking may be too lofty a goal to set for Peyton. That said, I will NOT give up on her.

So, that uplifting conversation with the doctor rounded out what I would consider to be one of the worst January's of my life. Now I wonder what February has in story for us! I'll keep you posted.