Hospital Life...Day 7

Earlier today I posted a Day 6 & 7 update which included information on yesterday and the early part of today.  Today has been a busy {and not great} day, so I thought I would go ahead and write a post just in case tomorrow gets to hectic to post anything early on in the day.

I shared with you that Peyton's right leg has been swelling above the splint:

After the doctors rounded this morning, someone came by to do an ultrasound on the top exposed portion of her leg to see if they could see signs of a blood clot.  I haven't heard anything, so my assumption is that they did not.

Because Peyton is retaining so much fluid, the attending felt it would probably be a good idea to get an echocardiogram done to ensure that there is not excessive fluid building up around the heart.

On Sunday Peyton had a renal ultrasound to make sure that her kidneys were ok.  They were slightly enlarged but did not show signs that urine was backing up back into them.

She did receive the albumin infusion today.  I am not sure what, if any, effect it has had on her at this point.  If anyone has any ideas on why this infusion is in the old-timey glass IV bottle, please let me know.  We're all curious!

The swelling in the picture at the top is mild compared to how it became as the day wore on.  It became increasingly puffy.  The swelling migrated towards the groin area as well as around the back.  In addition, the redness was moving up towards her hip in one area.  It was warm to the touch also.  The nurse, at my suggestion, marked the redness with a pen so we could see if it was spreading.

Peyton was just so incredibly uncomfortable today, so they decided to move her from the crib into a regular bed.  It's well padded, so there's no risk of her falling out.  It's bigger so there's more room for all the extra pillows and blankets that are being used to prop her in different positions in the efforts to redistribute the fluid that is pooling.  It's also a lot more comfortable for her.

That said, it was pretty obvious that Peyton's room was too small to accommodate a regular sized bed, so the nurses put together a plan to relocate her to a larger room.  A patient was discharged, the room cleaned, and Peyton was moved in to her new space this afternoon.  I must say that next time we wind up in this unit I'm going to have to put in a special request for this "suite"!!

What you see in the above picture is probably only about half of the room!!  This room is huge.  Honestly, it has no additional amenities than the previous room except that it has more space to spread out.  It's got the same couch.  I think it's a bit of a storage spot for additional chairs, so we have 3 guest chairs in here instead of the usual 1.  And I've only just noticed that there are no creepy sea creatures on the walls of this room!!  That's ok.  It's a corner room and two walls are pretty much solid windows so it's got the best view.  Much more comfortable in this room!!

There are probably multiple reasons why this swelling could be happening, but we have to be very careful with Peyton so that we are making sure that we do the right thing for her.  As of right now, I still don't have a final answer as to why this is happening.  One of the times a doctor was called in, they decided to call for Ortho to come and look at it.  The feeling is not that the swelling is related specifically to the fracture.  However, if the splint would need to be removed, then we need Ortho involved.  The same doctor who put the splint on was the one who came up to see her.  He did not feel that the swelling was bone-related.  He did, however, cut a section of the top of the splint about two inches down to create a split to allow for more "breathing room" for the swelling.  If I were to have taken a picture a little while ago, you'd probably say that the swelling has gone down significantly.  I would have to say that the split in the splint probably just allowed for the swelling to shift and redistribute to other areas.

Peyton did not have a good day.  She just had a rough day.  She was pretty sleepy but also very irritable when she was awake.  She's not comfortable in terms of just dealing with that swelling.  She's not herself.  She's gone downhill and we don't know what's at the root of it.  I'm sure everyone here would love to have answers, but they just aren't coming.  It seems like there were some little improvements, but then there are other things that are worse.  I don't know.  This is just so difficult.

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.

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.

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.

Still a Mystery

Things did not improve much over the course of yesterday.  I think if she had been left alone, Peyton would have slept all day.  Of course, she wasn't able to do that.

Peyton's face and feet seemed pretty puffy, which is always a concern, but particularly with cardiac issues.  They ordered an echocardiogram and apparently, based on what I heard this morning, that seems to be ok.  

Dermatology came in and checked her rash and bruising.  No answers there.

At one point, the doctors had been called back because Peyton just wasn't perking up and the swelling seemed to be worse.  Between that and some other issues, they decided to call the PICU doctor to come down and take a look at her.  She felt that whatever is going on with her is not respiratory an is likely neurological (heard that before).  She ordered an EEG.  That was done last night.  I haven't heard any results from that, but with the way things are going, I expect to find that it was normal.

I just have to take a minute to thank the people who have helped us out, particularly with Moira over the past few days.  It really means a lot!  Thank you!!

I have heard that Peyton may be going for an MRI today.  I'm not entirely sure.  I will, of course, be keeping 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!

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.