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!

Heading Home

We got the ok to head home!  It's going to be interesting, because "home" for Peyton is not the home she left on Sunday night.  Come to think of it, that goes for me as well!  Our move has been happening this week.  Well, not so much from Monday through Thursday, but Ron and his mom, who is visiting for a few days, have been hard at work today getting Peyton's room all set up at the new place.  As she cannot stay by herself, I am moving in with her today.  The rest of the family will follow tomorrow when the rest of the furniture makes it over.

So, in addition to sharing good news, I just wanted to remind you that we now have a new address.  If you need our address, please email me at sjfontenot72@gmail.com so I can send it to you.  We've lived in the same apartment complex for the past 4 years - but in 3 different apartments.  We've been fortunate to have a postal worker who knows we lived there despite our many apartment changes, and has simply put incorrectly addressed mail into our current mailbox (we still get mail addressed to our first place there).  This time around, that's not going to happen.  I did have our mail forwarded, but that only lasts so long.  Be sure to let me know if you need my address.  I did email several people the new information a week or so ago, but I know I didn't get everyone.

Thanks!!

A Quick Update

Peyton is still at the hospital tonight.  She pretty much slept all day, which is odd.  I don't know if it's just taking that long for that last dose of the neurontin to get out of her system or if something else is going on.  The new neurontin dose was given tonight, so it will be interesting to see how that affects her.

There's really not a whole lot of news today.  Still at the hospital.  We are hoping to be home tomorrow.  By home, I mean the new place.  Ron is going to be pretty busy getting Peyton's room set up tomorrow.  It'll be a busy day in general as we try to finish off this move.  We've lost several days in our process with this hospitalization, so we'll have to get right back into it as soon as Peyton's out of here.

I will update you to let you know if we're home tomorrow or if we're still here!

Another Update

So, we were hoping to be getting out of here today.  However, it looks like Peyton will be spending not one, but two more nights here.  As there is nothing I can personally do about this, I am just trusting in God with His plan and timing.  We're in the midst of a move right now.  And by "we", I now mean "Ron".  The plan had been that I would unload stuff and take over smaller items during the days this week and he'd bring over loads in the evening.  All of that came to a standstill with this hospitalization.

Please know obviously Peyton's the first priority, but we do have to get moved!!

So, today Peyton pretty much slept all day long.  With the exception of about 15 minutes, up until about 5pm, she slept.  This is so not normal for her.  The one new thing that had changed was the addition of a new pain killer - neurontin - in place of oxycodone.  It's a medication that you have to start out at a lower dose and work your way up to the therapeutic dose.  She started at the normal starting dose.  The doctors talked to neurology and to pharmacy about this and they think that this starting dose must have been too much for Peyton.  They cut her off and will let her get through the night tonight without it.  She can have oxycodone for pain though.  Tomorrow, with a clean slate, they will try a lower dose of neurontin, but they will do it in the evening, which means another night here.

I did speak with the geneticist in Boston today.  He spoke with her attending here prior to that.  He said that this low copper - or, in her case, an almost total lack of copper can be related to lots of different connective tissue disorders as well as mitochondrial dysfunction.  With some disorders it is possible for the optic, heart, and/or brain vessels to become twisted.  His suggestion is to do an MRI/MRA.  You know what an MRI is, but if you're like me, then you just googled MRA - it's Magnetic Resonance Angiogram.  Basically a cardiac MRI.  This will have to be done under sedation.  This will be something that happens after Peyton's out of the hospital.

Also, he would like her to have an ultrasound of her bladder.  Apparently with these disorders, the bladder can enlarge and form pouches called diverticula.  Urine will collect in these pouches.  He wants to make sure she doesn't have this going on.  She recently had an abdominal ultrasound (last week), so the doctors here are going to see if they have enough information to go on from that rather than put her through another test.

The geneticist in Boston has consulted with another specialist up there regarding her low copper.  At some point she will need to be treated for this.  Unfortunately, it isn't as simple as taking a supplement like you would an iron supplement.  Based on their discussion, what she would need would be a specially prepared copper supplement.  He does want the other investigative studies done first though.  This means getting her through the MRI/MRA, a possible ultrasound, and getting results back on genetics testing that is already in progress.  Not the German study...he has other testing in progress right now.  Once we get through that, Peyton will need to be seen in clinic by this other specialist - at Children's Hospital Boston.  Yes, this will mean another trip up there.  He is thinking early spring 2013.  Perhaps we can coordinate it with Moira's spring break.  

At any rate, they will have all the results from all this testing being done.  I think from that they will be able to figure out how to formulate this supplement.  I don't know how it is administered - through her g-tube or if it's an injection??  I don't know.  I just know that we have another big trip ahead of us and treatment sounds expensive!!!  We will see how this all plays out.  I'm so excited to have so much going on in the genetics arena right now.  We don't have an answer in terms of a diagnosis, but we now know about this copper/ceruloplasmin issue.  If it weren't for our trip to Boston, we might never have known this.  I feel like we've backed out of that dead end street and are at least heading in a new direction now.

I FORGOT:

Peyton has been having more focal seizures since she's been in the hospital.  These are little "staring" seizures.  They are non-convulsive and they last only a few seconds.  Since Monday she's been having these several times a day and they've been lasting longer - closer to a minute.  It's been noticed by several people.  Her seizure meds were increased on Monday.  Again, non-convulsive - she hasn't had one of the convulsive types in a few years.

I'll definitely be keeping you updated on all that is going on.  Hopefully Peyton gets home Friday!