Going Home!

In a VERY quick update, Peyton is going home tonight!!!  I will update more later when I have a moment.  It's exciting, overwhelming, and it has me a bit nervous and emotional.

Weary and Ready to Be Home

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

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

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

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

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

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

Nothing New

I wanted to write a quick update here just to say that there is nothing new to report. I had a couple comments from people because they hadn't seen one in a couple days. Honestly, we are just in a holding pattern while we wait on lab results from tests done on the weekend. We are also waiting on the neurologist here to confer with the geneticist I'm Boston. Hopefully we hear something soon. I think Peyton is pretty close to being able to go home otherwise.

Holding Pattern

Yesterday was a relatively quiet day. Peyton did not have a good night's sleep at all on Thursday night. She woke up a little cranky, but if I'm being honest, I truly felt like she was a little better and that perhaps we were heading in the right direction.  

Peyton, having not had the best night's sleep, fell asleep around 1:30pm. I thought that was fine - she probably needed a nap after the night's sleep she had. She basically fell asleep by the time the respiratory therapist was finished with her. When the RT came back 3 or so hours later, Peyton was still asleep. Her treatments involve lifting her up, putting a vest on her, hooking her up to a machine that inflates the vest and it vibrates at a pretty good force in order to help loosen up any junk in her lungs. She also gets a number of nebulizer treatments as well as inhalers. She slept right through that, perhaps only opening her eyes briefly once or twice. The next RT came in around 9:00pm or so. Same scenario. She'd pretty much been asleep since 1:30pm. But I figured she'd wake up completely at this point because she was still on the nasal canula for oxygen and she needed to be put on her bipap mask. Her canula is taped to her cheeks. That would definitely wake her up! Well, it did...briefly. And by the time I had the mask on her and started up the machine, she was pretty well out of it again. 

Sometime after midnight, while she was on bipap, her oxygen levels dropped and kept dropping to about 80-81%. I watched for a moment and the nurse came in since she had seen that on the monitors. I hooked up supplemental oxygen to her bipap machine. We shouldn't normally have to do this because the bipap keeps her levels where they should be...most of the time. I got the oxygen going at 1 liter and the same exact thing happened again. I bumped it up to 2 liters of oxygen. She did well on that amount. In the meantime, her heart rate was up in the 140s and even up to around 150. Even when she was sound asleep, it was in the mid 120s. Mid 120s is usually her normal "awake" rate when she's well. Because of all of this, the nurse called the RT to come in and take a look and she paged the doctor. All of this was going on between 1 and 2 am this morning. I think the doctor was in sometime shortly after 2. Of course, she was sleeping soundly and seemingly peacefully. There wasn't an explanation. 

Speaking of no explanations.... We still have no idea what is going on with Peyton. This is our 12th day in the hospital and there's no answers. Let me reiterate that this is not the fault of the doctors or hospital. They are doing everything they can. Trust me on that! I find no fault in anything they've done. Earlier in the week, I decided to email Peyton's geneticist in Boston to let him know what was going on. Not because I'm doubting anyone's abilities here but because I know that we're all sitting here scratching our heads. I thought maybe, just maybe he might have some ideas. As it happens, he is at a conference on metabolic diseases. He thought it interesting given everything going on with Peyton right now. We exchanged a couple emails and he then sent me one which I passed on to Peyton's team here. It had instructions to call him while he's at this conference. The doctors rounded this morning and they have apparently been in touch with him during the night via email and phone. He has some specific tests that he would like run. Per his request, they checked her ammonia levels in her blood. It came back as 80, which is a bit high. He was looking for something over 100 I guess. That said, they were going to get in touch with him about that since it was close. They may do a 24 hour urine test (she'd have to be catheterized for that). I think he wants her to begin IV copper supplementation, but getting that is not as simple as getting iron supplements, so they have to talk to pharmacy here. There's also some sort of steroid that he was talking about putting her on. Since there are a variety of tests he also wants her to have, the doctors here want to find out if those all need to be done before starting this steroid. Starting the steroid isn't the problem...it may just need to wait until after these tests. The bigger issue is the copper. We'll see what happens. 

Right now we're just in a holding pattern. Peyton's definitely more alert but her heart rate is higher than normal and she's not back to her base line. She is a mystery and she is leaving everyone scratching their heads. Keep on praying for wisdom and guidance for her doctors. This is as frustrating for them as it is for us. I wrote a post on my blog in the wee hours of the morning this morning. It's a little about Peyton and about community. You can read that here:

http://fontenblog.blogspot.com/2012/10/peyton-iphones-and-building-community.html 

And also just a little side note, I wanted to share that I had written a blog post last month as a "Compassion Blogger" - that is, I will from time to time write blog posts to promote the efforts of Compassion International in sponsoring children around the world, lifting them out of poverty in Jesus' name. September was "Blog Month", which means they utilized Compassion bloggers to the extreme to push to get 3,108 children sponsored in the month of September. They got 3,159 sponsored!! I wrote posts during the month towards this effort. One of my posts was selected as a "Best of Blog Month" post and was featured on their blog. You can read that here:

http://blog.compassion.com/dear-god-on-compassion-and-gratefulness/ 

So, we're just hanging tight here and we'll wait to hear what all the doctors come up with. I'll keep you posted.

No Transfusions!

I am happy to report today that Peyton did NOT require a blood transfusion!  The number that came back from the bloodwork this morning was the exact lowest number possible to have without requiring one.  So, it's close...but for now, we don't have to deal with this.

Peyton is pretty junky today but it doesn't seem to be settling in her lungs.  It's mostly upper airway.  She's a little cranky, so I'll take that.  She's still fairly sleepy though.  The puffiness in her face has pretty much gone away, so that's good.

I have been in touch with Peyton's geneticist in Boston.  Since he has taken great interest in her case, and since we have no idea what is going on with her these past 10 days, I contacted him to give him an update.  As it happens, he is at a conference on metabolic diseases, which is fortunate for us.  He emailed me the other night and he called me this morning.  I've now sent another email from him over to the team here so that they can see what his thoughts are.  He would also like for one of her doctors to contact him, so we'll see what comes of this.

Not much else is going on, so I guess that's a good thing!  I will, of course, be keeping you updated as things progress.

A Little Better?

I *think* that there is a possibility that today is a better day!  I think.

Peyton did well overnight.  She woke up a little earlier than she has been the past several days and she started fussing with her bipap mask on.  I realized that if she's fussing now with the mask, she must be starting to feel better.  She's been having to wear it pretty much 24 hours a day for the past several days and hasn't fussed one bit.  You can bet that means that she doesn't feel well.  She fussed a little more while she was being cleaned up and having her bedding changed.  Again, I take all that as a good sign.

We are hoping that today they will take her off another antibiotic, which will, at this point, leave her on only one of the original four antibiotics.  It's been 7 days or so of antibiotics, and since they haven't found anything, they've been peeling them away a little at a time to see how she does.

She had an EEG the other day and an MRI yesterday.  As expected, all of that was normal.

The one thing that's come up that is a little concerning is that she is getting more anemic.  She is usually a little anemic and she takes iron supplements twice a day.  However, her numbers here lately have been dropping a bit.  They are going to give her til the morning when they check her blood again.  If she drops to a certain number, then she will wind up having to have a blood transfusion.  She's never had one before, so that's a little concerning.  And, no, I cannot donate for her.  There's a whole process that would take days to get through.  But I will say that this is a great opportunity to learn the importance of donating blood.  It would be a great thing to consider!  Next time you hear about a blood drive, would you consider taking the opportunity to give blood?   I know I will!

That's about all there is for now.  I will keep you updated.

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.

Not Well At All

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

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

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

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

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

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

As always, I will keep you updated.

Dislocated

This morning started out with Peyton preparing to go up to the PICU to have her endoscopy that the GI doctor wanted done.  {They sometimes do procedures up there.}  We went up a bit after 10am or so.  The doctor was ready, as was everyone else, but there were technical difficulties with the endoscopy equipment.  Technology is great, but sometimes....

The procedure finally got underway around 11:30 or so.  I waited in the family lounge waiting area just outside the PICU.  When it was over, the doctor came out to get me and we went back to Peyton's bed, which was diagonally across from where she'd been on Wednesday/Thursday last week.  She was also directly across from the non-stop lullaby.  {If you follow me on twitter or facebook, you may have seen me post on Thursday that I'd been listening to Brahms Lullaby for about 15 hours straight at one point.}  Wouldn't you know it, the lullaby was on a continuous loop again.  Joking aside, it sounds like that child {not sure how old - closer to baby age than Peyton's age I think is having a pretty major surgery in the morning, so if you could say a prayer for her, I'm sure the family would appreciate it.

The scope went well and there was nothing major discovered, which is good.  It does seem that perhaps the "j" tube may be a little large and she will need to have the whole g-j tube changed out for something a little smaller and less likely to cause this irritation.

While she was recovering from the sedation up in the PICU, one of the residents came by and he said the radiologist had read the xrays from yesterday and she noticed that one of her shoulders was "strikingly" dislocated and she wondered if we were aware.  I explained to him that yes, Peyton's shoulders dislocate ALL the time.  I explained how we rotate her arm and get it back in or she manages on her own somehow.  She's just that loose.  After we were back up in Peyton's room, ortho came down to take a look.  Sure enough, at that moment, both shoulders were dislocated.  The doctor manipulated her shoulder back into place using the usual method of traction/pulling/rotating.  By the time he left the room, I think he re-set her shoulders 4 times.  They popped out that quickly.  He wanted xray to come and get images to be sure they were still in place.  Xray came...but I told them I'm pretty sure I can tell you right now without xray that both shoulders were right then dislocated.  They just dislocate THAT easily.

Peyton has been wearing her bipap day and night since Saturday's apneic event (that's what they're calling her "stopped breathing" event).  There's a possibility that they'll try to wean her off of it a bit starting Monday.  Normally she only wears it at night when she's asleep.  Right now it's day/night regardless of whether she's asleep or awake.  I can't imagine wearing it while awake!  Since it gives a breath if she does not breathe, that's why she's having to wear it.

I honestly can't think of what else is going on right now.  We're still in the PICU.  Moira's been home for the past few days.  I haven't seen her since Friday.  It's been a bit difficult for her this time around.  We still don't have any answers for anything.

Will keep you posted.

Update

Just a quick update.

Neurology wanted Peyton to have another head CT done.  She just had one Wednesday but since there's the possibility that her episode this afternoon was seizure related, they wanted to get another.  They did not want to sedate her.  When she had the one earlier in the week, she was so lethargic from being so sick that they didn't have to worry about sedation.  Not the case today.  She is allergic to Versed, which is often used as a light sedation.  That really stinks in cases like this.  So they decided to go with another dose of Benadryl.  She's getting it anyway because she gets Red Man's Syndrome with one of her antibiotics - Vancomycin.  They gave it to her through her IV and that seemed to help.  She was a bit fidgety when they were getting her situated on the table, but they basically put he in a cocoon thing, strapped her in and then used tape across her forehead and chin so that her head would be stable.  They also put cloths around her head to keep it in position.  We all stepped out of the room and the CT was a success.  As for results, I have not heard.

The GI doctor was by a little later on.  I don't know that I mentioned this, but when we got to the room in the PICU stepdown unit, we noticed her j-tube was leaking out bright red blood.  To back up she has a g-j tube.  The g- portion is the gastric tube - all meds go into that which goes into her stomach.  The j- portion bypasses the stomach and goes into the jejunum.  The nurse was told by the resident to let it drain by gravity, so they wrapped it in a preemie diaper and let it drain.  There was a pretty decent amount that drained out.  Obviously this is not normal, so it has to be investigated.  Feeds were stopped as soon as this was noticed.  Anyway, the GI doctor said that in order to determine what is going on, they will need to do a scope.  That is going to be done around 10am tomorrow (Sunday).  There are a number of possibilities, so I'll try not to worry about it until we know for sure.  She will have to be given a light sedation for this procedure.  The doctor from the PICU who saw her came by tonight and spoke briefly about it.

Peyton's pulmonary doctor was by just before we came over to this new room.  He wanted Peyton to be on continuous bi-pap, regardless of whether she was asleep or not.  This is to help keep her airway open in the event she stops breathing again.  It can be torture to get her mask on her when she's awake so she has it on when she's asleep, so the concept of keeping it on her while she is awake seemed a bit daunting.  She's been a bit fussy with it - moving her head around a lot - but she's doing far better than I imagined she would.

Will update more tomorrow.

Remember Last Month?

Today was going along just fine, although Peyton was pretty irritable and her heart rate was a bit higher.  The doctors made their rounds and we were sharing all our concerns about her.  They left the room.  The nurse came along.  He was in the doorway at the cart {they have carts in the hall with their computers and some meds/supplies are also locked in there}.  I lifted Peyton up into a sitting position so I could make adjustments so she'd be more comfortable.  Almost immediately she kind of threw her head back and was staring off into nowhere.  Then things seemed all to familiar.  Remember when she stopped breathing last month for about a minute??  It was happening AGAIN.  I called to the nurse who called down to the doctor who was still in the hall but up a bit.  Everyone came in.  They didn't call a MET but someone asked if they should.  The episode lasted about 30 seconds this time.  I was able to grab for the suction while the nurse got her oxygen going.  The doctor was just seconds behind coming into the room, but she was pretty well through it when she came in.  Her heart rate was elevated, although it has been all day.

More discussions ensued about what's going on with Peyton.  They still don't know.  More discussions ensued about what to do with Peyton.  She had been taken off one of four antibiotics that she's on, but they began discussing putting her back on that.  They were going to stop a second one, and the orders to discontinue had actually been put in.  They cancelled those orders and have continued.  She's on 3 antibiotics that I know of for sure.  Not sure about the one that was d/c'd if that will come back or not.

I described what happened to the doctor and stated it was exactly like the episode last month, only not as long.  It is possible, as I thought last month, that it could be seizure-related.  They are going to talk to neurology and get their take on it.  She may need an EEG.

The pulmonary doctor was consulted after this and this was him finding out that she was even in the hospital.  He was not impressed.  I don't blame him.  Actually, as far as I was concerned, he had been contacted because I heard someone say that they were going to - either in the ER on Tuesday or in her room Tuesday night or Wednesday morning before she had the episode that sent her to the PICU.  Anyway, he's on the case now and his suggestion was for her to wear her bipap 24 hours a day to help keep her airway open in the event this happens again.

Because of what happened, it was decided that Peyton would be moved to the PICU stepdown unit.  So we are not where she was on Wednesday {thank God}, but she is being more closely observed here.  Not that she wasn't before...but there's more constant monitoring in the stepdown unit.  She's on the full monitor rather than just the pulse ox monitor which only measures oxygen and heart rate.

Nothing had been mentioned yet about going home, but now that we're over here, it's definitely going to mean a longer stay.  I don't know what is going on with Peyton, but I believe there are multiple issues.  If anyone from the show "Mystery Diagnosis" wants to weigh in, I'd be more than happy for them to!!

As always, prayers are appreciated!  Please keep Moira in your prayers too.  This stay is really weighing on her.  She was unable to go somewhere today because of Peyton being in the hospital so she was upset about that.  She's worried about Peyton.  Seeing Peyton in the PICU, even if only briefly, was scary for her.  It was scary for us!!  

I'll keep you posted!

Back In A Room

I apologize for not updating yesterday.  Wednesday was pretty scary to say the least.  It was also extremely exhausting.  Peyton was in the PICU for under 24 hours, but it was highly stressful, exhausting, etc.  While I could use my laptop at her bedside, I was honestly too wiped out to do much of anything.

Peyton was released from the PICU early afternoon yesterday, at which point she was put into a regular room, just down from the one she started out in on Tuesday night.  She had no major crises while in the PICU (Thank God!).  While in the PICU she had to have her shunt tapped (think spinal tap but on her shunt in her head).  You can click through this article to read up on what that's all about and you can see pictures as well: http://emedicine.medscape.com/article/81058-overview.

The doctors were just by a few moments ago.  So many tests have been run on Peyton and, believe it or not, we still have no answers.  They have NO idea what is going on.  The odd bruising that happened right before going to the PICU may be a reaction to one of the four antibiotics she has been on (it's a new one to her).  We're not 100% sure about that, but it's a possibility.  There are several things going on and there's no answer for anything.

Would I like an answer? YES - but so would the doctors.  They're just as anxious to know as I am.  They are sorry we're here and that we've gone through so much.  I am very appreciative of all they are doing and I get that they don't have any real answers but I also get that they're doing all they can to figure it out.

Peyton is doing SO much better than Wednesday.  SO much better.  The difference is immediately obvious to anyone who saw her then and sees her now.  We're not back at 100% yet, but we're getting there.  She's off 1 of the 4 antibiotics and may come of another since it appears it may be the source of the latest weird bruising that's happening.

No indication has been given as to when we'll get home, but it won't be in the next couple days.

We appreciate and thank you for your prayers!

A Scary, Eventful Day

Yes, it has been quite the eventful day - and not in a good way.  I will start by saying that we still have no answers as to what is going on.

This morning it was just more of what I described yesterday.  Within a couple hours, she was having problems holding her oxygen level and needed oxygen.  It was still a little low and her heart rate was also high.  No fever to start the day.  Within a few hours, she began developing weird bruises just out of nowhere.  All the while, she was extremely lethargic.

I called for the nurse.  It wasn't her own who came in, but that nurse got Peyton's nurse.  She called the doctor.  The doctor came and he left and came back.  Then they did a MET call (think emergency response type of call minus crash carts and other scary things).  Soon we had 15-20 nurses, doctors, respiratory therapists descend onto her room and at any point in time there were 4-6 people immediately at her bedside.  Respiratory began doing treatments.  They had an ambu-bag ready.  She wasn't ventilating well.  Her coloring was poor.  Her respiratory status was vastly different from where it was not long before.

It wasn't scary in the "she stopped breathing" sense that we had a few weeks back.  But it was pretty darned scary having that many people come in all at once and take over the room.  I was standing towards the back and there was a nurse in the room who had just come in to talk with me (she handles pain management and palliative stuff). She just happened to be in the room when it all happened, so she was an incredible support during everything.  One doctor came in and asked questions that I couldn't even answer because I was too emotional.  She answered for me.  

Long story short, after a debate between sending her to the PICU vs the PICU step down unit, the PICU won out and we were sent there.  It's an open unit with curtains between beds.  It's loud.  Lots of activity.  Lots of beeping equipment.  Alarms going off.  Just busy.  Chairs but nowhere to sleep in here.  No food or drinks allowed.

Prior to the events I described, she had been sent for a stat shunt series.  She has a shunt because of hydrocephalus.  There was some concern over everything being shunt related.  The series is basically a set of regular xrays to look at the shunt and it's tubing that goes into her abdomen.  It was shortly after returning to the room that everything happened.

A stat head CT was also ordered.  She had that a while after being brought up to the PICU.  It was well-timed as Ron and Moira had arrived and he had food for me.  I wasn't allowed to go for the CT so I sat with them and waited.  Everything looked ok on all that imaging, but they ordered for her shunt to be tapped.  I guess you could say it' like a spinal tap but they tap into her shunt in her head.  They are able to check flow and pressure when they do this, so all that looked good.  They took samples of fluid.  So far the numbers are all looking good with nothing pointing towards a bacterial meningitis.  

That said...we still don't have a clue what's going on.  Everything keeps coming back negative.

Please keep Peyton in your prayers.  Today was pretty scary.

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!