Hospital Life...Day 2

Just in case you don't follow me on facebook, twitter, get automatic email updates from this blog, or just otherwise haven't heard in some way, Peyton is back in the hospital.  I wrote a brief post on this blog yesterday, but it was sent from my phone.  I don't know how many actually saw it.  I had actually written a post earlier on Tuesday which was an update on various things including Peyton's visit to the Endocrinologist, the possibility of traveling back up to Boston, and the apparent seizure activity she had Tuesday morning.  I thought I was done updating for the day.   I thought that was enough info.  Apparently not.

So...

After that seizure activity, Peyton was extremely irritable.  I mean - to the extreme.  Inconsolable.  It was heartbreaking.  Her home nurse and I couldn't figure out what was going on.  Peyton was so upset and agitated.  This continued throughout the day.  She was crying/screaming so much she eventually wore herself out and finally fell asleep.  The second she woke up, she was back to screaming.  We didn't know if it was something to do with the seizure activity, if her leg was hurting her {it seemed to be bothering her in some way, but was it because of what happened with the tremors...we didn't know}, or if it was something else.  It definitely seemed to hurt if you tried to move her right leg, but we had no idea why or where exactly the pain was located.  At about 2:00 we decided we needed to take he to the ER.  No more trying to figure things out from home.

We got to the ER.  We usually never have much of a wait in the waiting room.  Of course, because it's difficult for Peyton to be in her wheelchair for very long since all the fractures last month, it was almost an hour wait.  When we got back into a room, we waited forever to see anyone.  Not even a nurse came in for ages.  At least we had this creepy crab to look at on the wall the whole time {every room in the children's hospital has a "sea" theme}.  At least it wasn't the creepy seahorse.

When we finally saw someone, we went through the whole long story of what was going on, but how we really didn't know what was wrong.  It is so incredibly difficult when your child cannot communicate in any way what is wrong or where it hurts.  We just knew she wasn't "right".  Even her oxygenation was poor.  She didn't look "herself".  There were a number of things that were just "off".  While we weren't thinking in terms of her having a fracture, we did make sure that they knew that her right leg definitely seemed to be bothering her.  I thought her leg looked a little puffy just above the knee, but I couldn't say for sure - it's been a little puffy since the big splint came off a couple weeks back.  I asked the nurse about that bruise on her knee.  We weren't sure about it.  She had a similar bruise with the tibia fracture she had last month {sorry the picture is fuzzy}.  And do you see the way she's holding her foot??  She's been doing that for the past couple weeks or so since she got the big splint removed.  Can you say painful??  Go ahead and try - flex your right foot up towards your leg, then turn your foot out to the right, now roll down on the inside of your ankle and you're just about there.  It has been fairly permanently in that position and we've already had her PT and the orthotist look at it and have a special foot splint made {we haven't gotten it yet - she will have that and a soft knee immobilizer soon}.

In the process of trying to figure out what's going on, a chest x-ray was ordered as well as x-rays of her leg from hip to toe.  Chest x-ray because she was sounding junkier and was requiring more oxygen than normal.  A while later we got partial results of the leg x-ray.  The doctor said that the radiologist thought it looked like a possible fracture, but that it may have been there on the last x-ray.  I'm pretty sure it would have been hard to overlook that given how extensive Peyton's case was reviewed back in February!  Unless they were referring to the x-ray when she went to the Orthopedist for follow-up when she had the splint removed.  Regardless, the radiologist wanted to defer to someone higher up the chain.  We waited a while longer.  Sure enough, Peyton has a brand new fracture.  This time it is a distal femur fracture.  This means that the break is straight across the femur, right above the knee.  Remember when she had the tibia fracture, it was straight across below the knee.  It's the same leg.  When the Orthopedist saw her last month when she was in the hospital, after describing the poor condition of her bones, he said they typically see these fractures either right above or right below the knee.  Well, now Peyton has the full set.  

So, it was back into a big splint like she was in before.  This time, however, since we had shown the Orthopedist the condition her foot was in, he had to get it straightened out before splinting her.  Inside the splint, just as before, there is a strip of plaster that runs down the back of her leg, behind the knee, and down under her foot, right to the toes.  Unlike last time, there is also a strip of plaster that goes under her foot and up the sides of her ankle.  It goes up just a little ways - not all the way up to the knee.  This will give that ankle a bit more stability in the splint.  Here are a few pictures showing the process.  Her leg/foot is wrapped in this soft cotton.  There's a whole process behind how it's done, especially at the front of the ankle.  It's neat to watch them doing it.  It's done so fast!  The plaster is applied and more cotton put on.  Then it's wrapped in a bandage.  This splint goes up a little higher on the thigh than the other one did because the break is above the knee.

There was pretty much nothing about this process that Peyton enjoyed.  First of all, she'd had her leg drawn up to her body all day and moving it in the slightest caused her a lot of pain, so this was excruciating.  In fact, during the process, I saw her face get pale.  Well, you can imagine.  I've never broken anything, but in my head I was trying to imagine what it must feel like, and how much of a shock to the system what she was going through must be.  I'm sure she must have been experiencing a bit of shock.  The picture below was taken in the ER after the splint was done.  She doesn't look happy at all.

We were given the option of going home or staying to get her pain under control.  We were told how that would go and we opted to do that.  By the time we got to this morning, what I thought was going to happen and what did happen were not the same.  She would have had more pain meds given at home.  I spoke with Ortho this morning and that was all fixed pretty quickly.

Peyton's heart rate was really high this morning when I woke up - in the 150s/160s.  Her blood pressure was also high and she had a 99.1 temp.  For her, that's high since she normally runs in the mid 96s to 97s.  She wasn't herself.  By mid-morning she was sounding really junky.  I actually had them call Respiratory Therapy back in between treatments because she sounded so bad.  She also seemed to be working harder to breathe.  This is all typical for one of her respiratory illnesses.  The RT agreed this was not typical Peyton.  Peyton was supposed to go home today, but there was no way I was going to bring her home the way she was.  I asked about having her seen by the gen peds team just to see what was going on.

By this afternoon, Peyton was transferred from the Ortho service to Gen Peds.  She has a virus.  She had something even before we got to the hospital.  We knew that, but didn't think she was really sick.  But it came on pretty quickly this morning.  She's also dehydrated.  She is going to be kept here til they get everything under control.  The high heart rate could be from pain {surely it is!}, from illness, from dehydration, etc.  They are running some labs to see if they can figure out what's going on.  We'll be here longer than planned, but we need to get her back to her base line before we can go home.

I contacted Endocrinology {the doctor we saw on Monday}.  He wanted to be contacted if Peyton should develop another fracture.  I didn't think it would be so soon!  Her pamidronate infusions will have to wait 6-8 weeks from now {they weren't scheduled to start immediately anyway, so that's ok}. He contacted the Geneticist in Boston today to discuss this with him.

I contacted Dr. T in Boston {Genetics} myself and he contacted me this afternoon.  He's speaking with people up there as well and mentioned his discussions with Dr. R in Endocrinology here.  The game plan is still to get her up to Boston either the week of April 29 {mine and Ron's anniversary!} or May 6.  Not sure yet.  He is going to have further discussions with people up there on how best to transport her given her high risk for fractures and her oxygen requirement.  Lots of good stuff to look forward to!

I wasn't planning on having a huge update post like this, but here we are.  Back in the hospital...again.  And, again, we so appreciate your prayers and support.  Thank you!

Back in the Hospital

After the last post, you'd have thought we had enough going on. Apparently not. We brought Peyton to the ER. Long story short, she is in the hospital again. She has a fractured femur. Same leg as before (it was the tibia last time). I will post more when it's not from my phone.

Prayers appreciated. Thanks.

To the ER We Go

I am beginning to feel a bit like a yo-yo.  Home.  ER.  Home.  ER.

After a great report from the Orthopedist on Monday, we were back in the ER on Thursday.  Yes, we were there last Saturday as well.  Last time it was a swelling and seemingly painful arm that led us to the ER. This time it was a swollen right foot.  She woke up Thursday morning and was pretty much screaming and crying in pain.  Her foot looked odd.  It's the same one that had been in the splint up until Monday.  She has had her foot flexed up and also externally rotated.  It is not normal.  She never used to hold her foot like this.  It wasn't right.  She woke up before 6am, so I got myself ready quickly so that I could star giving her all her meds earlier.  The idea was that by the time the nurse arrived at 8am, we could be off to the hospital as quickly as possible.

Our time in the ER was not nearly as long as it had been on Saturday, thank God.  They x-rayed her foot.  The good news {eventually} was that there is nothing wrong with her foot.  It is such an effort to bring her out of the house these days.  Not that you want there to be anything wrong, but it makes me feel horrible to put her through all of that for nothing.  Of course, she can't communicate except through crying, so there was no way to know that there was no new fracture.

We are living in a heightened state of concern for Peyton, so I feel a little like the boy who cried wolf.  Of course, we have to go through this because we would have no way of knowing for sure what is or is not going on except by bringing her to the ER.  It's just so frustrating that this is how it is.

In other news, it seems that neither Peyton or myself are sleeping much at all these days.  I am in her room and I'm having to jump up constantly to suction her, or when her monitor starts alarming, or to give her pain meds.  I'm so tired right  now.  I feel like I can barely function.  I don't do well with resting.  I try to take naps sometimes, but I cannot shut my brain off.  It keeps going, which makes it very difficult to rest.  We've talked about this before, but Ron mentioned again yesterday that maybe it's not such a ridiculous idea to have me on a "night shift" type of schedule.  We have a nurse usually from 8a-8p, so the thought is that somehow I will sleep from shortly after the nurse arrives until mid afternoon {hopefully!}, then get up in time to get Moira off the bus after school.  Then I would basically stay up through the night, doing housework and whatever else I'd normally do during the day, get Moira ready for school in the morning and off on the bus just before the nurse arrives.  We decided we'd give this a try yesterday afternoon.  Too late to get a full day's sleep after what was a horrible night the night before, but after dinner I slept basically between 8:30p and 1:30a.  I probably woke up briefly a couple times in there, but that's probably no worse than my usual night's sleep.  I've been up since then.  It took me a few minutes or so to adjust to being awake, but I got up and went about my business.  It's now just after 4a and I've managed to get a third load of laundry in already.  Peyton has had to be changed twice.  She's been awake nearly as long as I have been, which seems to be a new nighttime trend for her.

We'll see how this new schedule goes.  Weekends will be a little different since we go out to church on Sundays.  It's also Moira's birthday Sunday, so I can't really sleep all day then, can I?!

Anyway, we could use some serious prayers here for rest and sleep - for both Peyton and myself.  Neither of us is doing well in those areas.  It makes it difficult to do things like eat properly or think about meals or anything else I should be thinking of under ordinary circumstances.  I am hoping that I can get back to some sense of feeling normal despite being on an abnormal schedule.

Back To the ER

It makes me nervous when people are nervous about things they see with Peyton.  We had a home nurse on Saturday who has only been with Peyton once before.  She was here a couple hours when she noticed that Peyton's left arm seemed swollen above where her splint ends.  I agreed.  It also seemed that when you would touch this particular spot, that she would flinch as if it was hurting her.  The nurse was fairly concerned, which, of course, heightened my concern.  Not that I wasn't concerned on my own!

I decided to call the hospital and have the pediatric orthopedist on call paged.  They told me the resident's name and said he would be calling me back within 30 minutes.  That didn't happen.  As it drew closer to noon, we started debating whether or not we should venture off to the ER.  It's not an easy task bringing Peyton anywhere, especially now.  She actually hadn't left the house since she returned home from the hospital via ambulance on February 14th.  She hasn't sat in her wheelchair for more than a couple minutes {total} in all that time either.  Let's not forget she requires oxygen all the time now, so that adds another level of complexity.  We had to be sure we needed to go. 

Our children's hospital has an after-hours walk in clinic which handles all types of issues, including fractures.  It is no further away from our place than the hospital - just in a different direction.  We've never been there but since I knew this wasn't a time where I would expect Peyton to be admitted, I wondered if we might be better {and quicker} served by going there.  I called them and explained our situation and asked them what they thought we should do.  They told us to go to the hospital ER.  So much for that.

We had to wait a little longer than normal in the waiting room, which made me nervous simply because the longer we waited, the longer Peyton had to be upright in her wheelchair.  She has two compression fractures in her back, so we're just nervous.  Eventually we were taken back to a room.  I'm not sure of the exact time we arrived, but it was probably a little before 1:00pm.  As you can see by the picture below, Peyton is a bit of a moving target.  She never likes to lie straight on the stretcher.  She usually is straight across it {the short way}.  Quite often I will find myself in this position, having to hold her head in my hands as she lays like this. You can put her head back up on the stretcher, but she's only going to wind up back in this position anyway.

They paged the orthopedic resident who, by the way, happened to be the one who didn't return my phone call.  I didn't say anything.  It sounded like they'd had a couple traumas that day, so I let it slide.  You never know what's going on on the other end, so better to just extend some grace and trust that there was a reason.  There seemed to be.

In addition to the arm issue, Peyton has thrown up a few times the past few nights - for no reason.  No illness.  No known reason.  Since she can't tell us, and she has a shunt in her head for hydrocephalus, they like to err on the side of caution and make sure that it isn't a shunt-related problem.  They did an abdominal x-ray to make sure there was nothing unusual going on there.  There wasn't.

Ortho came in and removed the splint from her left arm.  The arm was x-rayed to make sure there were no new fractures.  Long story short, there weren't.  Not sure what was causing all the swelling but when the splint was removed, it really highlighted just how swollen it was.  Below is a picture of her splint after it was removed:

The doctor decided that it would probably be a good idea to get a shunt series done.  This required a trip to radiology {the arm and abdominal x-rays were done in the room in the ER}.  They x-ray the head, chest and abdomen {multiple x-rays} to get a look at the shunt itself as well as the tubing that runs from the shunt down into the abdominal cavity.  There's several feet of tubing in there!  From there, she was to get a head CT.  But first the Orthopedic resident caught up with us in the x-ray room.  He had to come out of surgery to look at her x-ray and re-splint her arm.  He had only a very short amount of time as he had to get back into that surgery.  He did what he needed to do and left.  Then Peyton was moved to the next room over for the head CT.  She was put on the table for that, strapped in, and secured.  Only she kept getting her arm out from under the piece that was supposed to be strapping her down.  She was also extremely agitated and wouldn't hold her head still.  Of course, they're talking to her like she can hear or or comprehend that she just needs to lay still for a minute.  Needless to say, the head CT didn't happen.  We went back to the ER room.  Eventually they decided that the x-rays looked good and were comfortable with not doing the head CT.  Thank God.  It was now after 7:00pm.

It was quite the lengthy process.  We didn't get home until after 9:00 or so.  Nothing is ever easy.  I feel like we put Peyton through all of that for nothing, but at the same time, we needed to go - we didn't know what that swelling was from.  It's just a shame she had to endure all of the transferring, moving, sitting, and so on.

Back to the Hospital

We thought we were in the clear when it seemed that Peyton did not get that nasty GI bug that Moira, Ron and myself all got.  Yet this morning, we wound up taking Peyton to the ER.  Not with a GI bug, but yet another respiratory ailment.

I've spoken several times lately about how Peyton is requiring oxygen during the day while awake - something that never used to be the case.  This has not changed for the past several weeks.  However, over the past couple of days, the amount of oxygen she is requiring during the day has increased.  She has also been a little on the junky side, with increased heart rate and the odd low grade fever here and there.  I've been in touch with the Pulmonary clinic about her condition and it was suggested that perhaps we might need to start a course of IV antibiotics.  We can manage this at home since she has a port.  By the time last night rolled around, I was thinking I'd definitely make the call to the pulmonary clinic to suggest that we get that started.  Peyton was sounding horrible and it didn't look like we needed to wait on this any longer.

Then this morning came around.  Peyton was hot to the touch so I undressed her and got a temp on her.  She had a temp of 100.8.  That may not seem like a raging fever, but you have to bear in mind that her "normal" is upper 96 degrees to mid 97 degrees.  And, of course, we're ultra cautious anyway, so 100.8 isn't anything to mess around with.  In addition, she sounded even worse and she just looked "off".  I made up my mind that we were going to have to take her to the ER, but I also knew we'd have to call the home nursing agency pretty quickly to call off her nurse for today.  She has transportation issues, so we would have to be sure to catch her before she left, as she has someone bringing her to work.  No sooner did I form that thought did the agency call me to say that she had called in sick so I guess for today it all worked out.  Ron got Moira on the bus to school and I got Peyton and her gear ready to go and we headed off to the children's ER at MUSC.

Ron dropped us off at the door and then went to park the car.  I went in with Peyton and we were taken back to a room pretty quickly.  Once in a room, it was mere minutes before a doctor was in the room.  It seemed almost immediate.  While we did bring her in because she was obviously sick, apparently she was sicker than we realized.  The doctor enacted their "rapid response" protocol immediately based on their assessment.  This meant that her port was accessed within minutes and a bolus of fluids was pushed through very quickly.  They gave her additional fluids shortly afterwards.  Antibiotics were ordered and given fairly quickly as well.  A second antibiotic was given not long after that.

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A lot of blood was drawn for labs and a chest x-ray was also done.  The x-ray doesn't look too bad.  We're still waiting on the blood work results.  The doctor was in several times.  We knew pretty early on that Peyton was going to be admitted to the hospital, but there was some concern over whether it would be to the PICU or to the PICU step down unit.  They eventually decided on the step down unit.  With the fluids and oxygen, Peyton's color and mood started to improve a little.  Her heart rate finally came down out of the 150s.

We didn't spend a horribly long time in the ER before Peyton was taken to a room.  She is under the care of the PICU doctors, as opposed to the general peds team.  She wasn't in the room long when her Neurologist came by.  He just happened to notice in their computer system that Peyton was in, so he came by to see what that was all about.  I was glad, since I was actually going to email him to let him know.  We discussed the lumbar puncture and other research type issues that are hanging out there for Boston.  He is thinking that if she is doing ok, he may be able to do the lumbar puncture on Thursday.  

In addition, he is talking about contacting the researchers {Children's Hospital Boston and NIH} to see what we can do about expediting some of the stuff that's hanging out there in the hopes that we can get her some form of treatment.  Of course, it's research and there are FDA guidelines and I'm sure other sorts of hurdles to cross, but he is hoping that somehow he might be able to take some of that from them and perform whatever needs to be performed right here at home rather than have her travel.  He is looking at it from the point of view of being "emergency and compassionate" reasons.  We will see what happens.  I would say that if someone said we were needed up in Boston in the next month, we probably wouldn't be going.  She needs to have all this stuff done, but it's getting to the point where it just isn't going to be feasible because of her medically fragile state.

We aren't sure what is going on.  There is the great possibility that what is {and has been} happening are not so much an illness as they are signs of her overall condition diminishing.  As the PICU doctor said, often children with severe issues like Peyton, over time, will become weakened in the areas involving swallowing, breathing, and so on and what appears to be an illness might actually be more of an inability to perform these functions well.  We just don't know.  I would suspect, though, that because of her increased oxygen requirement during the day that it is the latter.

In addition to all of this, Peyton's level of pain today must be excruciating for her.  She is on Neurontin and Oxycodone for pain, but it seems like that's not doing anything.  I noticed it first thing this morning.  I barely touched her leg and she began screaming out in pain.  I don't know what is different about today but it is unbearable for her to be touched or moved.

We pray.  We pray often and we pray hard for Peyton.  The problem is that we don't know which direction our prayers are supposed to take.  It is heartbreaking to see your child enduring so much.  You wonder how much a body can take.  In addition, this isn't something we've really talked about openly, but we're being asked questions that no parent should have to answer for their child regarding the "what if" scenarios.  As much as you are praying for Peyton, please pray for us that we will have the wisdom to make the best decisions for her.  Please feel free to share this site to people you know would be willing to pray for Peyton. She needs many prayers!!

Thank you!

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.

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!

911 and A Trip to the ER

Last night Peyton was not having anything to do with falling asleep. She rolled around in her crib for a while. She was laying quietly shortly before 11pm when I heard her then make weird noise. I first thought she needed suctioned. I looked at her and something was wrong. I took a moment to watch her. I wasn't sure if she was about to have a seizure. It would be her first in just under 3 years if it was. She had her head tilted back. Her chest was sucking in like I have never seen before. She was moving strangely as this was happening. She was neither inhaling nor exhaling. She was not breathing. Her oxygen was I. The 70% area but within seconds it hit 27%. Ron was not home and I was with her alone. I began rubbing on her chest to stimulate her as her face turned grey and lips blue. Her head rolled limply to the side. I will be perfectly honest - I thought she was gone at one point. I tried to call Ron but hung up and called 911. It is hard to explain what is going on when you are in tears and can hardly breathe yourself. I know they were just wanting me to focus but I wanted to slap the person on the phone a couple times. I just needed her to listen to me. She probably needed something else from me. Peyton started to come around. I needed Ron. I knew he was on his way home, but with Moira in the house too, I needed him ASAP. My laptop was up and while explaining to 911 how to get to an apartment that everyone has problems finding, I put out a message on facebook for someone to please call Ron because I was calling 911. My sincere gratitude to whoever reached him. My sincere apologies for possibly freaking out a couple hundred facebook friends including family who otherwise would not have been finding out about Peyton this way! 

She was stable when EMS arrived. Ron made it home moments before so I told him to stay home so we didn't have to wake up Moira and drag her to the ER too. I walked out with the SEVEN EMS and firefighters who responded. She remained stable on the way to the hospital and still is. She was admitted though.

I have absolutely no idea what happened to Peyton last night. I don't know if we ever will. But she is stable and is finally getting some sleep after being up all night.

Did I mention we are in the middle of moving right now?? Last time we moved, Peyton wound up in the hospital though it was not nearly so dramatic. 

I am not sure how long she will be in. I was meaning to write a post on how things are going on the genetics front. I will save that for another day, but I am trying to coordinate a couple lab tests that a couple docs as long as we are here. One is a 24 hour urine test. The only way that can be done is if she is catheterized and I can't imagine doing that at home!

So...after a very scary event, Peyton seems fine but we just don't know what happened. Prayers are much appreciated. I will update later.

We Just Love the ER So Much

So Peyton was admitted on the 4th and got to go home on the 5th.  She went home on an antibiotic and seemed to improve a little after a few days.  However, last Tuesday she started getting sick again.  She could have gone to the ER but we were able to get right in to the pulmonary clinic.  We spent several hours there, but eventually were sent home and Peyton began a 2 week course of IV antibiotics.  This is possible to do at home since she has a port.

She has been improving a bit more on the new IV antibiotics. If you follow me on facebook, you will know the absolutely ridiculous schedule I am having to follow for these meds.  I'll go into that another time.  Anyway, last night (Sunday), I couldn't get the line to flush properly when I went to hook up her meds.  Long story short, I eventually began her meds and about 10-15 minutes later noticed a large wet spot on her shirt.  Not good.  Not good at all.  I took her shirt off and the port had infiltrated, meaning that the needle probably dislodged somehow and the fluids were going directly under the skin and not through the port into the vein.  The skin all around her left chest/armpit area were totally puffy and very irritated looking.  This meant a DEFINITE trip to the ER.  I'm actually typing this in the ER at 12:37am Monday.

Surgery came and had a look.  She will have a port study done Monday (today) - they will access it and inject a dye to see how it flows.  The xray done earlier showed the port to not be quite in the right position, so there is a chance there's a problem requiring surgical intervention.  Hopefully not.

No port access means no meds.  They had to start a regular IV.  Fortunately they were able to start one on the first try.  She has horrible veins, so this is a miracle.

Please pray for all to go well with the port study and that no surgery will be needed.

Will keep you posted.  If you follow me on facebook, you'll get more frequent updates as things progress.  www.facebook.com/sarahfontenot

Back At the ER...Again

Peyton had a rough night last night.  She was restless and I noticed that her heart rate was higher than normal as she was sleeping. I checked her temperature and it seemed ok but she felt warm.  First thing this morning I noticed her heart rate was quite high.  I checked her temperature and she did have a fever.  She sounded horrible.  Rather than wait any longer, we got ready and we had Peyton at the ER by about 8:00 this morning.

They did a chest xray, blood work and urine test.  Her white count was a little elevated and her xray showed a bit of aspiration.  All in all, she's not as sick as she was back in February when she was admitted; however, it made more sense to keep her overnight.  She could have gone home, but honestly, that didn't sound like a great idea.  If ever we're on the fence about whether or not she should be admitted, it's always safest to just admit her.  The pulmonary doctor wanted to see her in clinic first thing in the morning, which is just difficult getting her going that early with all her meds and breathing treatments.  It's just a lot easier all around if she remained here overnight.

So...we are back at the hospital.  Praying that she doesn't continue to get sicker and that they can get her on the right antibiotics to help her out!

Update From Trip to the ER

Peytons gj tube problems continued after leaving the ER.  Really, there was no doubt in my mind that this would be the case.  It was leaking and there was something wrong.  So, first thing this morning, I called peds radiology.  I got voice mail.  I called back a few minutes later.  I talked to the tech and explained what was going on.  He asked me to hold {and, fyi, he knows who Peyton is...we're pretty familiar with the folks up there}.  A minute later the doctor herself came on the line.  In the time it took to get her on the line, she'd actually already pulled up the films from Saturday and knew the story!  I told her exactly what was happening.  Unlike the unknown radiologist who read the films on Saturday, this one said yes, this was a problem and basically asked how soon we could get there.  I hung up the phone and told Peyton's nurse to get her ready to go.  It was a good thing we were going as the tube actually became clogged while doing the meds, so the "g" portion wasn't working at all anymore.

We got to the hospital and went up to radiology.  We didn't have to wait too long before being called back.  Peyton has a brand new tube and no problems in that area now!

In other news, the oxycodone seems to be helping a bit.  She's still not feeling well as far as the respiratory stuff goes.

Our trip to Boston cannot come soon enough.

Another Trip to the ER

We've been doing pretty well for a bit but Peyton wound up at the ER no Saturday.  She's been having some respiratory issues.  It's been a while, right?  She was also having issues with her g-j tube as well as a lot of pain that no one seems capable of dealing with.  I wrote a blog post on my blog about how thing went down in the ER.  You can read it here:

http://fontenblog.blogspot.com/2012/07/how-i-spent-my-saturday.html

Enjoy your holiday weekend!

In Hospital & Back Home Again

I want to apologize for the lateness in this post.  I did not have my laptop with me, and was unable to post anything from my kindle....BUT....I wanted to say that Peyton was in the hospital this week.  That said, she is home again!!

On Monday afternoon, her home nurse was concerned about her.  Her heard rate was elevated and she was noticing some other subtle changes.  She was convinced we needed to go to the ER.  I wasn't...but that's just me.  Finally I relented, and we were going to go.  We were getting Peyton situated and were about a minute from heading out the door when she coughed up a bunch of blood.  That did it for me.  Definitely convinced we needed to go.

So we went to the ER and along the way, she did the same thing again.  We got to the ER shortly after 7pm Monday.  About 2 hours later, we knew she was going to be admitted.  She wound up in the step-down unit of the PICU again.  Same place as last time - just a few weeks ago.  By sometime after 11pm, we had her in a room.

The main concern was the blood.  Her chest x-ray seemed improved from a few weeks ago when she had the pneumonia, although they could tell it was still {mildly} present.  She'd received a couple different antibiotics via IV {one dose each} but then they were discontinued.  The main reason for the stay really became about the blood.  So, I suppose after all, my leaning towards not going to the ER was ok, but because of the bleeding, we did the right thing.

The ICU doctor was wonderful but he transferred Peyton over to the general peds team on Tuesday.  They monitored her til Wednesday and we were back home by 4:30pm on Wednesday no worse for the wear.

She seems ok now.  Still getting over the initial illness from a few weeks go, but she's generally improved.  Since the two episodes of coughing up blood, she hasn't had that happen again - and they never did determine why it happened.

This site was not playing nice with others as far as my kindle goes, so I was unable to post here.  However, I did post a couple updates on my blog, which you can check out HERE and HERE.  If you have been following me on twitter, facebook, or on my blog, then these two links won't be new to you.

I'll invite you to follow along on my blog anyway.  Just click HERE to get to the main page.  I tend to write a lot more on there anyway.

We're so grateful for the love and prayers we've received the past few weeks since Peyton was first hospitalized.  Thank you to those who have prayed, sent well-wishes, brought meals or coffee or whatever helped to get us through.  It's been a really challenging past few weeks.

Thanks so much!!

Trying This Again

Hi there.  I tried to type something last night on my Kindle, but I was having issues.  I tried to save what I had done as a draft, but it published even though it wasn't done and had some nice autocorrect issues.  I had to delete it and wait til I had Ron's laptop here.

So...I am back.

I am updating today to let you know that Peyton was admitted to the hospital yesterday.  On the 14th, she wasn't herself.  Just fussy and tired, but not wanting to sleep.  I couldn't pinpoint what her problem was.  We did attend the Luke 14 Banquet at our church.  You can read about that on my blog here. 

When we got home, she wound up having a low grade fever and she threw up once.  That night, she was pretty restless.  In the morning she was burning up and threw up some.  Her temp was 103.5  Her heart rate was up around 180. Once we got Moira off to school, Ron and I brought Peyton in to the ER.  She was right out of it by the time we got to the hospital.  Ron dropped me off at the door and went to park.  Peyton totally bypassed triage and was taken back immediately.  Within seconds we had 7 or 8 doctors and nurses in the room with her.  Her coloring was not good.  Her blood pressure was very low.  Her heart rate was very high.  Her fever was high.  

They accessed her port immediately and pushed fluids in with a big syringe rather than just start the IV.  They gave her over 300cc's of fluid that way before starting the IV, hoping it would help to get her blood pressure back up.  Her oxygen was also pretty low.  They had to put her on a mask and give her lots of oxygen.  It was a bit frightening to see how quickly she became so sick.

We waited all day in the ER.  The children's hospital is packed.  We finally got into a room around 4pm or so.  She was brought up to the step down unit of the PICU, which is not a place we've been to before.  More monitoring here.  

So far, we have found out that she has rhinovirus and pneumonia.  Other labs are still pending.  

In addition to this, over the weekend, the balloon in her GJ tube had broken and the tube was in danger of falling right out.  However, her home nurse managed to get it secured really well before that happened.  I hadn't actually set up anything to have the tube replaced prior to heading to the ER, so I made that issue one of secondary concern while we were at the ER.  She had the tube changed out today.

We should be getting transferred to a regular room.  I thought it was going to be today.  I suppose it still could be.  We'll see.

I will keep you updated.

How Our Weekend Went

What...a....weekend.

Saturday morning was all about the Race For The Cure.  We actually got out as a family.

We got home from the race around 11:00am.  The nurse arrived at noon.  When she arrives, she does a routine assessment.  She found that what appeared to be a diaper rash starting on Friday now appeared to be a couple of abscesses.  They were dark and pretty hard around the area.  She was also pretty red and inflamed.  Her temp was about 99.3.  Ron, the nurse and I debated bringing her to the ER.  We decided ultimately that if there was even a question that we might, then we might as well go now.  So we did.  

Peyton was seen right away in the ER.  The doctor felt that the abscesses, while definitely present, were still relatively small.  She said that if they were to drain them, they'd have to sedate her.  First, she's allergic to Versed, which is what they'd typically use.  Second, with all her health conditions, she's not one you just jump into sedation without a really good reason.  We got an antibiotic and were sent home.  The doctor said she would be in on Sunday as well and to come back if we felt like things weren't improving.

On Sunday morning, I woke up and saw that Peyton's pulse ox monitor was displaying a heart rate of 173!!!  She's normally around 105 or so first thing in the morning.  I get concerned when it's creeping up in the high 120s.  I took her temp - 102.3.  I woke Ron up and told him to get ready.  He immediately thought it was the abscesses but I said no, it's the heart rate and temp.  The abscesses too, though - they were far worse.  The swelling had increased tremendously and the area that was hard had expanded.  I wasn't sure if the other issues were symptoms of the infection or if we had a potential respiratory issue going on as well because she's had some increased secretions lately which were also yellowish.

Back down to the ER we went around 7:00am.  Again, we were seen right away.  The resident said the abscesses would have to be drained.  She had to discuss with the attending since there was the whole sedation issue.  They ultimately decided to give her morphine and to use a numbing patch over the area.  Then they would incise and drain.  Eventually, they began the procedure.  Poor Peyton was such a little trooper.  My heart goes out to her for all she endures!  She had to have 4 or 5 shots of lidocaine in the area first.  Diaper area, people.  OUCH!!!  I watched the procedure and I watched her.  She was not happy and I don't blame her one bit.

Suddenly I started to feel a little light-headed.  There was a chair right at the bedside, so I sat and continued to comfort Peyton.  The nurse was on the other side of the bed opposite me.  She asked if I was ok.  I told her how I was feeling.  The feeling continued.  I got a little nauseous.  The doctor said "Mom looks pale."  Then the nurse told me I should transfer to the recliner type chair that was beside the one I was in.  I did that while she got a cool wet towel to put on my forehead.  She also paged for some gatorade STAT.  When that came, I was feeling a bit more nauseous.  She gave me some bags just in case.  I took a few sips of gatorade.

Not sure how much longer it was, but I vaguely recollect opening my eyes slightly to see my left foot propped on a chair.  I no longer had the gatorade in my hand and the towel was gone.  How odd, I remember thinking.  I remember my face twitching.  Then I remember faint noises all around me.  I remember hearing "She's turning blue."  I remember the surroundings as being dark and fuzzy.  Don't know how to describe how I felt aside from that.  When I opened my eyes slightly, the EMT (who was doing a peds ER rotation) was on my left.  I heard loud beeping on my right.  I was lying on the floor.  I remember people pushing Peyton's stretcher aside as they continued working on her.  The EMT, in his lovely British accent, asked me if I could open my eyes.  I did.  He asked if I was diabetic.  I am not.  They did a finger stick and checked my glucose level.  It was fine.  I had an oxygen mask on my face.  The EMT asked if I knew what day it was.  Sunday.  He asked if I knew what month it was.  I kind of laughed (as much as a recently unconscious person can) like it was a silly question, but I actually had to think about it for a few seconds.  My inclination for some reason was to say December.  I did settle on October.  He said he would skip the other silly questions for now.  Then they began discussing how to get me onto a stretcher.  Eventually I was moved onto one and off I went to the adult ER!

Long story short, I had a vasovagal reaction (a sudden drop in blood pressure) which they think could have been a combination of me not having eaten much and then the sight of the procedure Peyton was having.  I don't get that because it wasn't bothering me!!  Then I had a syncopic episode (fainting).  Then I had a couple little seizures (the twitching I vaguely remember).  They did and EKG, bloodwork and urine test.  Of all that, all that came back was that I had a mild urinary tract infection!  Who knew.  It took me passing out to find that out!  I am sure that was not the cause of my "episode".  They ordered me a food tray.  I ate what looked edible and it was good.  Yes, hospital food was good.  I think I was too hungry to care.  I am fine.  I am tired.  I feel stupid.

Now...while all of this was going on with me, Ron was not with me at the hospital.  Peyton was on her own!  They had someone from Child Life sit with her while she waited in the ER to be admitted.  I was able to text Ron and he came back to the hospital after church.  Apparently I missed the incident at church where a burning bag of popcorn caused the entire building to be evacuated!  Had Peyton been well, she would have been there...in her wheelchair...with no elevator to get her back down to the 1st floor (the special needs ministry is on the 2nd floor).  Wonder how that would've worked out.  The evacuation didn't last long - and the service did actually proceed.

Back at the hospital...Peyton was admitted.  They set up her crib in a spot that would be easy to see from the nurse's station since no one was here with her.  Poor kid!!  When I eventually got up to her room, the resident and med student were in.  I saw the abscess area.  The incision has been packed and the area covered.  It was looking significantly better at that time.  They cultured the drainage.  Waiting for results.  It could be staph or MRSA.  They said it's mostly likely MRSA.

As of Sunday evening. the redness and inflammation is as bad as ever - worse even.  At this time, we're waiting on an ultrasound.  The doctor said it's possible there is another pocket of infection.  They're going to talk to peds surgery to have them come take a look.

For now, we're in the hospital (well, Peyton is admitted...I'm just with her!) and hopefully things will start improving soon!  We appreciate your love and prayers!