Hospital Life...Day 30

Today is Day 30.  If you missed yesterday's post, you can read that HERE.

This morning got off to a busy start.  By 9:00 am everything was loaded up and ready for going down to Nuclear Medicine for her gallium scan.  This scan was in the room across the hall from where she was on Monday and used a different type of camera.  Unlike the scan on Monday, Peyton had to be transferred from her bed onto a table for the scan.  They put a slide board under her and then shifted her onto that, then onto the table, then removed the slide board.  It was the easiest way to transfer her, but it wasn't without some discomfort.  Thankfully she was able to get some additional Morphine during the process.  She had also had her Ativan prior to going down there.  All in all, the entire experience {transfers and scan itself} did not appear to be too painful for her.

The process of scanning her took around an hour.  She was scanned from head to toe.  What they were looking for was to see where the gallium from the injection on Monday had concentrated.  It settles around areas of infection, abscesses, fractures, and so on.  They were hoping for at least an 80% chance of getting a clear picture of what's going on with Peyton's leg.

Later in the day, we heard that they did in fact find a couple large areas of infection.  Peyton's right thigh was quite lit up on the scan, meaning that there is a lot of activity going on there.  We were told that there is infection in the tissue.  There was also a second area of infection.  Bones are encased in a membrane called the periosteum.  One thing that we have known is that she has a very large sub-periosteal hematoma - a collection of blood / bruising between this layer and the bone.  We were told that this area was also an area of infection.  These two areas obscured the bone so much {how they lit up in the imaging} that they could not tell if the bone itself contained an infection.  Since there is an infection in the sub-periosteal area, the likelihood of there not being a bone infection would be slim.  This is what we were told.

Later on, the Infectious Disease team came in.  We heard an updated version of the story.  I am not sure how many doctors have weighed in on the imaging from the gallium scan - or what their specialties are - but there is some dispute among them now as to what is going on in her leg.  Is it infection as we were told originally after the scan?  Perhaps not.  There's not a consensus on the issue at the moment, so right now we are kind of back to square one in terms of what we know about what this area of concern with her leg is.  The idea of going down for more scans had been mentioned when we were down in Nuclear Medicine.  That wasn't going to happen after we found out it was an infection.  Now that they aren't sure, Peyton is going to have more imaging done tomorrow.

For now, we just wait and hope that we can get a clearer answer tomorrow.  I know everyone is trying their hardest to figure this out, although it was kind of disheartening find out one thing and then find out it may not be that after all.  It's just one more day.  She's already on the antibiotics she would be on if it is an infection after all, so it's not like she's not getting appropriate treatment.

In other news...

It has been days since Peyton has smiled.  She has earned the nickname "Grumpy Cat" on the floor.  Don't know Grumpy Cat??  Here's a picture of Peyton channeling her inner Grumpy Cat:

Peyton received some more beautiful flowers yesterday!

I'll keep you posted on how the next round of imaging goes.  Hopefully we'll have some answers tomorrow.

Hospital Life...Day 29

Today is Day 29.  I wrote yesterday's update late and just posted it right before midnight, so if you missed reading that, you can read it HERE.

Today has been yet another challenging day - and it's not over yet!  I thought I would get a quick update out while I'm thinking about it.  The list of items of things going on with Peyton is pretty extensive right now.

Last night, Peyton had a fever.  She was started on a second antibiotic yesterday but the night resident changed it to something else to cover for a possible hospital-acquired pneumonia.  Her chest x-ray didn't really show anything definitive in terms of a pneumonia, but that's not unusual for her - and it doesn't mean it's not a pneumonia.

I probably hadn't even mentioned this, but Peyton was transitioned down on the TPN nutrition and back up on her tube feeds.  She has been back on the tube feeds solely since Sunday.  They ran all the labs to check her nutritional status.  Her potassium should be at 3.5.  It was 2.1.  She had to be given an IV bolus of potassium over 2 hours this morning.  They re-checked that value and it came back as 2.2, so she is currently in the middle of a 4 hour IV bolus of potassium.

I haven't mentioned her hemoglobin lately because it has been holding steady for the past week, I think, in the mid-10s.  Over the weekend it dropped into the 9s and then into the 8s.  They've been monitoring it much more frequently.  This morning it was lower at 8.4.  It was rechecked this afternoon and it is now 7.5, only hours after being checked this morning.  It will be rechecked, but that's "blood transfusion low", so what they will do is recheck again in a little while and go from there.  It is possible Peyton will require another transfusion.

A lot of labs have gone in a poor direction since transitioning back on to tube feeds.  The reason for the transition is because of her pancreatic enzyme insufficiency which was recently discovered.  In order to receive her doses of the enzyme, she needed to be back up on her tube feeds at her goal rate {the rate she came in on from home}.  This enzyme insufficiency is a possible reason for her malabsorption and, therefore, malnutrition.  By giving her the enzyme, she should theoretically be absorbing the nutrients she was not absorbing prior to having to start her on TPN.  With the enzyme, she should theoretically have been able to transition her successfully back on to tube feeds since she would theoretically now be able to absorb everything once again.  This does not seem to be the case.

Pain management is still an issue.  They were going to revise the plan to taper her off the morphine and on to something else to help with some of the side effects of morphine.  One of the side effects is urinary retention.  She had to have a catheter put in every 4-6 hours after yesterday afternoon just so they could drain her bladder.  They decided to go ahead and put a foley in today.  The pain management plan is remaining where it was for now.

Peyton's leg still does not look good.  It is the strangest thing.  The redness gets slightly better and slightly worse.  There is a large bruise that appeared but then 30 minutes later it wasn't really there.  One of the residents is concerned that the reason for the drop in her hemoglobin might be due to a bleed happening in her leg.  An ultrasound has been ordered so they can get yet another look.

The gallium scan that was supposed to happen today {part 3 of the 3 step process} is now happening tomorrow.  Nuclear medicine decided that the gallium injected yesterday really needs to sit in her for 48 hours for it to concentrate in any "hot zones" so they can get the best possible images.  Since there is about an 80% chance of getting definitive answer from the scan in general, I am all for waiting until they feel like they can get the best images.

Right now, we are waiting on ultrasound, additional blood work to be done to check hemoglobin and potassium, and then we'll go from there.  I am sure there's more going on with Peyton than "just" this, so if I think of it, I'll catch you up in the next post.

As always, your prayers are appreciated!

Hospital Life...Day 25

Today is Day 25.  If you missed yesterday's update, you can read it HERE.

There is not much more heartbreaking than watching your child suffer in unbearable pain.  That was what most of today was like.

Let me back up though.

I was woken up by the doctor somewhere around 4:30 this morning.  That nearly did me in.  However, it wasn't what I was thinking it was going to be.  Apparently Peyton, by that point, had not wet a diaper in 12+ hours.  The nurse had already been watching this and they did a bladder scan and discovered she was retaining quite a bit of urine {I think the doctor said about a half liter}.  It's not good to retain, so they decided they were going to do a one-time in and out cath to empty her bladder.  The doctor was letting me know what was going on.  They gathered up their supplies and were just about to start opening packages up when they opened up her diaper to discover that she just peed.  Way to go, Peyton!  She did not have to be cathed, which was wonderful news.  That would not have been pleasant for her at all.

The resident came around just before 8am.  Once again, Peyton's leg looks no better.  She was sleeping, but she started to have this strange movement with her respirations.  We watched that.  He paged the other resident, who came in pretty shortly thereafter.  Meanwhile, Peyton did stir a bit, and when she did she did not appear to be comfortable at all.  When the other resident came in, Peyton was not making that strange movement.  It only lasted a short time anyway, but she hadn't repeated it.  She listened to Peyton and, while she sounded clear, she noted her breaths seemed long/slow.

The team rounded sometime just before noon.  I was, again, invited out to the hall with everyone.  It was quite a large group.  They went over everything system by system as they always do.  It's always interesting to hear what they have to say.  That took quite a while to go through everything.  Once that was done, they came in to the room.  Peyton was awake but having some discomfort which quickly escalated into the worst pain I have ever seen her in {or anyone for that matter - myself included}.  It went on and on.  She was absolutely inconsolable.  One of the big topics of discussion is pain management.  I was glad everyone was in the room to see what she goes through, although this was, by far, worse and longer lasting than anything I'd yet seen.

I was by Peyton's side for the most part but then I had to step back and I just cried.  I hate crying in front of one doctor, but it was everyone.  I just want to fix Peyton.  I want to make it all better for her.  And if I can't, I want to take her place.  And I can't do that either and I just feel so helpless.  It's worse because she cannot communicate in any way at all to let us know where she hurts or to let us know what makes it better...or worse. 

Peyton's physical therapist from the outside world came to visit and she walked in to all of this and I felt so bad that's what she walked in to, but it was so good to have someone in the room who wasn't there in a medical capacity just to stand with me through it.  We glanced at the clock at some point shortly after everyone had cleared out of the room and it was 12:45pm, so between being out in the hall and being in the room, these people were with Peyton the better part of an hour! 

Peyton's continuous Morphine dose has been adjusted upwards.  There are also orders written for "rescue doses" which are doses to be administered if needed for breakthrough pain.  She can get up to 3 in an 8 hour period I believe.  I would say that it was not until about 4pm that her pain was "controlled" to where she was actually sleeping soundly and not having intermittent periods of pain.  While our visitor was here, Peyton did rest some, but she'd stir a little here and there.

So how's the leg you might be wondering??  When the team came in on rounds, her leg was worse.  It was more red.  It appeared more swollen.  An ultrasound was ordered to see if they might be able to see any signs of an abscess.  They did not.  That doesn't mean she doesn't have an infection.  The bone scan will now be happening on Tuesday.

I had another sit-down today with one of the people on Peyton's team to address my concerns.  I am too overwhelmed, tired, emotional, etc. to get into that.  Today was really rough.  I think we have all been pushed far beyond our capacity.  That said, we are still trying to figure this leg thing out but mostly we are trying to keep Peyton comfortable.

If you are reading this and you are a part of Peyton's team {particularly if you happened to be present in the room this morning}, thank you for all of the concern you are showing for Peyton and for us as a family.  I know what it feels like to watch things unfold as her mother.  I know you are doctors and nurses and you don't have the personal investment in Peyton that we do.  But you're not machines either.  I don't know how you manage to remain professional {calm, collected, etc.} in situations like these.  I can't imagine it's easy for you to see a child in so much pain either.  I just want to thank you again for everything you are doing for her.

Praying for a peaceful night for Peyton.

Hospital Life...Day 21 {Part 2}

Earlier today I wrote about an issue that came up with Peyton's leg.  You can read about that HERE.  This post is to update you on that situation.

Here is the original picture I posted:

That is what we woke up to this morning.  It did not look like that at all last night or through the night.  Anyone who saw her leg seemed shocked the overnight change.  An ultrasound was ordered and Ortho was contacted.  The felt that the splint could be removed.  In addition to this change in her leg, her x-ray from yesterday showed a new fracture.  How a fracture happened with her leg in a splint for three weeks is beyond me, but it did happen.  The ultrasound revealed no DVTs {blood clots}, so that was good.  However, we are still concerned over the possibility of an infection in her leg.  After a couple of hours out of the splint, this is what her leg looked like:

Peyton is a high risk candidate for anesthesia and surgery, so our fear was that something surgical might need to be done - even if it was "simply" to drain it.  Fortunately, right now, it seems that that isn't going to be necessary although we certainly appreciate any and all prayers for this situation to resolve quickly.  We do not want any infection developing at all.

Nutritionally, the TPN appears to be helping, so that is a good thing.  Her labwork where that is concerned is trending in the right direction.  However, some labs came back from stool studies that were begun shortly after Peyton was admitted a few weeks ago.  One of the results showed a deficiency in her pancreatic function which could be contributing to her malabsorption issues.

The highest level of concern today has been for Peyton's leg.  It was ranking pretty high today.  We are still obviously concerned about the possibility of infection - how deep it goes - is it in the muscle?  the bone?  We're not sure about any of that just now so she is on a second IV antibiotic which should cover any type of infection.  Hopefully things will be looking much improved in the morning.  Because of all of today's issues, the doctors have increased Peyton's morphine dose and added in regularly scheduled Tylenol along with scheduled morphine doses every 3 hours.  It seems to be helping some.  She has to be in pain.  I don't know how she couldn't be!

Many thanks to friends of ours for providing dinner.  We appreciate the trip you made to the hospital with it when you knew Ron was up here with me rather than at home.  Thank you so much.  It was delicious!!

Thank you, also, to a group of "Christian lady" blogging friends who have been praying for us for so long, who sent these beautiful flowers to the hospital to brighten up Peyton's room.  They are beautiful and smell wonderful!

Thank you also to one of my blogging friends who created this sweet button for bloggers to add to their sidebars in support of Peyton.  I really appreciate this.  It's perfect!  {If you want the code, let me know!}

Hospital Life...Day 20

Today is Day 20.  In case you missed yesterday's update, you can check that out HERE.

There is not a lot of news to report today.  Peyton is about the same as yesterday.  She continues on her IV antibiotics for a possible infection. 

Peyton was supposed to have her right femur x-rayed tomorrow, but it was done today instead.  Had Peyton gone home from the hospital 19 days ago, tomorrow would have been her 3-week follow up with Ortho for the fracture to check on it's healing.  Her thigh and knee are still quite swollen.  If there is a difference in size {for the better}, it is not much at all.  I'm no radiologist, but I saw the x-ray on the portable machine.  Ouch!!  Poor Peyton.  Just looking at her leg makes me want to cry.  It's so swollen and she has got to be in a lot of pain.  She is still in the newest splint, and I assume that will continue for a while.  Just for my peace of mind, I would want her to!  When she had the tibia fracture back in February, she got to a point in the three weeks her leg was splinted where she would move her leg around as much as she was able.  That isn't happening this time around.  That is a little worrisome to me.

There is still no talk of a date to go home, as things still need to be sorted out with her labs, TPN, pain management, and so on before that can happen.  To be honest, I have fears about going home.  We will have her admitted to the hospice care program, so that will be helpful, but it also puts us in a new season of Peyton's life.  When I see how Peyton is today, I see a pretty sick child.  I see an improved version of the girl laying in that bed a couple weeks ago, but nothing has changed with what's going on on the inside - the underlying condition.

I try my best to not worry about the things I shouldn't worry about - whether it is with Peyton or things on the outside world.  I am trying my best to only be concerned with today, but then things creep into my mind....like who is the next attending going to be and when will the change happen.  Will they be as familiar with Peyton as they need to be?  Have they been with her before?  Again, I get ahead of myself by worrying about these things, but still I worry.

Tomorrow we wrap up three weeks in the hospital.  Thank you again to everyone for their kindness, support, prayers, etc.  We truly appreciate it!!

Keep up the prayers!!

Hospital Life...Day 19

Today is Day 19.  If you missed the Day 18 update, you can catch up HERE.

Last night, Peyton's heart rate began to rise a bit.  It was concerning to find it back in the 130s-150s.  It was higher than it has been lately once again this morning.  She also didn't quite look "herself" yesterday.  Ok, well, that could be said for the past 19 days, but considering how she's been the past few days, yesterday was a negative change.  I thought her eyes maybe looked more purple or sunken.  She was a bit more irritable and wanted nothing to do with smiling for anyone today.  Her temperature had also been a little higher than it had been both yesterday and today.

When the doctors rounded, they decided that it would be a good idea to get a chest xray.  I don't know what that showed officially.  They also drew some blood and did a urine culture.  Her white count was up a bit.  Rather than take any chances with Peyton, they began some IV antibiotics.

A couple of the nurses on the floor gave Peyton a "spa" treatment when they were cleaning her up today.  One decided that the ties from one of the yellow disposable gowns that they wear when going into rooms on contact precautions {as they do in Peyton's room} would make good pigtail ties.  They also gave a pedicure to match her manicure from the other day.  I thought that was so sweet of them.

Aside from what seems to be some kind of new infection brewing, it's been a quiet day.  Ron and Moira came up this afternoon as did one of Peyton's home nurses.  I think it's a "tired" day all the way around.  I took a nap late this afternoon.  I feel marginally better now.

We shall see what tomorrow brings.

Hospital Life...Day 12

Weekends are a little quieter here.  There aren't so many people around, it seems.  The residents came by and then the team {a smaller version of the team that rounds during the week}.  I was sad.  The doctor who has been with Peyton from Day 1 went off service.  A new doctor is on for the weekend and then another new one will be on after the weekend.  Truly, there's no "bad" doctor on the list of doctors whose service she could be on, of all the ones we've ever seen.  But if I had to choose my top 3, these three would make up that list.  It's funny, because I had just had this discussion with Ron.  I knew that this was coming.  I shouldn't fear change so much. 

Since we're in it for the long haul, I had Ron bring a couple comforts of home for Peyton - not just me.  She's had her pink hippo since we went to the ER 12 days ago, but I had him bring her frog and her blanket from her crib at home.  We've got an animal theme going.  the purple elephant is new.  MUSC has a volunteer program called Happy Wheels.  Donations of books and toys are given and each Thursday, volunteers come around with a cart.  Each shelf of the cart has toys or books {one week it's toys, the next it's books} grouped by age range.  Peyton has been the recipient of several Happy Wheels items over the past few years.  The elephant was from this past Thursday. The frog is actually from one of her stays this past February.  What a great program to have.  If you would like to find out more and especially if you would like to contribute in some way, you can read more HERE.  As for the hippo that everyone seems to love so much, I received that myself as a "blogger perk".  Over on my personal blog, I was contacted by a company called Hullabalu and asked to do a review of one of their toys in exchange for the toy of my choice.  I gladly accepted the offer.  You can read about that over HERE.  It's too bad Dr. M went off service because Peyton's about to add another animal to the collection later today as I asked Ron to bring another specific item from home.  He was always commenting on her little friends.

As for how Peyton is doing, it is honestly so hard to say.  I had a talk with the doctor yesterday outside of the whole team being present and there is still the hope that we will get her back home.  Some of her lab numbers look a little improved {hemoglobin, albumin} but she just doesn't look good.  I took this picture yesterday.  She doesn't look well here and she doesn't look as "well" today as she does in this picture.

One concern that I have right now {since yesterday} is that her arms and hands have been icy cold.  Absolutely freezing.  Sometimes it's her entire arm through her hand.  Sometimes it includes part of her side and part of her chest.  Sometimes it's one arm/hand and not the other.  Sometimes it's patchy spots of coldness on both sides.  Along with it, she's so clammy to the touch.  She is sweating a lot.  If you run your hand through her hair, her scalp is wet and her hair is soaking wet in places.  Her temperatures have been up a little - in the upper 99s to 100.3ish.  For her, that's high.  Fever yet freezing cold to the touch.

I don't understand what is causing this to happen.  Is it something in her brain not firing right?  I'm not sure.  The doctor this morning said that it's possible that with the diuretics being given to take fluid away, there's a shift in her system that is causing the hemoglobin numbers to be falsely higher than they really are.  I can't explain it right - but it made sense when he explained it.  Her hemoglobin has been trending upward the last couple of days - enough to where they called off a possible blood transfusion on Friday.  It's possible her anemia is causing this issue with her body feeling so cold.  It could also be some sort of infection, although I think that's a small possibility right now, but certainly something to watch for.  They are obviously going to keep a close eye on everything.  The doctor said that it is possible she may need a transfusion and so not to be surprised if that does become necessary again.

Peyton completed a total 3 infusions of iron by IV yesterday, after being given once every couple of days.  The plan is to repeat an iron study on Monday to see where things stand.  Peyton's potassium is also really low.  I believe they had added some potassium to her list of meds {via g-tube} but it is quite a bit lower now, so they are currently giving her an IV infusion of potassium.  That will run over a total of about 3.5 hours.

Gastroenterology has weighed in.  They ordered some stool studies to be done.  She doesn't have c diff, so that's good.  Some of the studies are going to take some time to come back, but they are essentially looking to see what fats and proteins are being excreted in her stool.  They currently don't know where she is losing her protein.

I just want to thank the people who have been so good to us.  Neighbors who have helped out with Moira - you have no idea how grateful we are that you've been able to step in and help with her.  Friends, please remember Moira when you're praying for us because I know this is hard on her even if she doesn't say a whole lot.  I don't know how much she is aware of how sick her sister is.  We haven't had a "big" talk with her because we don't want to cause more harm than good, especially if it's done prematurely.  But she has to be aware on some level, so please pray for her.  Friends who have come to visit, brought food or snacks - thank you!!  Your company is so appreciated.  So is everything else.  But just to have company is huge.  When we're up here alone, it can start to feel pretty isolating, even if I do have the internet to bring the world a little closer to me.  Family.  Wow.  We were expecting Ron's dad and his wife to visit long before Peyton was hospitalized.  I am so grateful they still came even when the found out half the family wouldn't be home and that they got a chance to come visit with us up here.  We also had the unexpected surprise of having my cousin and his wife come to visit.  He just happens to be Peyton's godfather and they are vacationing in the Myrtle Beach area, which is maybe a couple hours north of here.  We're so grateful they came to visit!  

And then there's the medical side of things.  This is Day 12 and, honestly, until a little blip with the nursing this morning, I haven't had a single issue or complaint about anyone or anything.  Even with the issue this morning, everything is resolved and we're back to things being exactly as they were.  From doctors to nurses to respiratory therapists to nurse's aides to everyone else who has been involved somehow in caring for Peyton, please know that all you do is so very appreciated.  I know without a doubt that Peyton is a mystery.  A challenge.  I know that what's been going on has probably been frustrating.  As Peyton's mom, I watch and I wish I could fix things.  I don't know how it feels to be the professionally trained person who is supposed to be able to fix things only to keep coming upon more and more obstacles.

So, that's kind of where we stand for right now.  I'll be keeping you posted....

Hospital Life...Day 10

We are technically starting Day 11 as I type this, as it is just after midnight.  However, this is to update you on Day 10 {Thursday}.

When I woke up Thursday morning, I noticed that Peyton didn't look as "good" as she did Wednesday.  I wouldn't have said she looked great then either, but to me there was a definite change.  Her eyes seemed more sunken.  She just didn't look as great.  I also noticed that her heart rate seemed to be a bit higher than it had been Wednesday.

When the team rounds in the morning, the first thing that happens is that I am asked my opinion of what I think is going on with Peyton so far that day.  I gave my impressions as I always do.  I commented on the heart rate, how she looked, what I noticed about her swelling, and so on.  At rounds, the bloodwork that had already come back showed that her hemoglobin was once again pretty low and she was going to need another blood transfusion.  However, labs later in the day showed higher values so they decided to put that on hold.  They don't want to transfuse unless absolutely necessary.

Peyton required an IV dose of iron today.  This is the second of {I believe} three doses.  The IV iron is a mass quantity of iron for severe anemia.  I was told today that Peyton essentially has no recordable values of iron in her system - that's how bad it is.  They are hoping that these IV infusions will help.

It was decided that the team would get a couple other specialties to weigh in on Peyton's case.  First, Gastroenterology.  They can help to see if there is something going on that would be causing Peyton to be losing protein or have some sort of bleeding issue in the GI tract.

The second specialty was HemOnc.  That's Hematology / Oncology if you haven't heard the term before.  Hematologists are blood specialists.  They came in and took a history of Peyton and asked a lot of questions.  I was able to point out the random strange bruising that happens with her.  She has several examples of it right now.  I was assured that they are in absolutely no rush to get Peyton out the door.  There is something going on with her that is very frustrating and near impossible to figure out.  It's hard to treat something when you don't know what you're dealing with.  They don't understand why the things that are being tried aren't working as well as hoped.  The one doctor was just so sweet and definitely reassuring that they are doing everything they can.

So, what does this mean?

More tests.  More labs were drawn.  They will probably draw more later today.  HemOnc actually thought that her thyroid looked a little "full", so they'll probably test that as well.  But lots of other tests will be done as well.

For now, they are making Peyton as comfortable as they can.  She seems to be having her pain managed alright.  She definitely is more comfortable in the big bed.  As we're now 30 minutes into Day 11, I'm going to wrap up this Day 10 post so that I can get some sleep.  I'll update later on with Day 11 information.

Thanks so much for your prayers and support.

Hospital Life...Days 6 & 7

It took almost 7 years, but Peyton spent her first holiday in the hospital yesterday - Easter.  Obviously we truly rejoice at the significance of this day.  That said, it really stinks to spend a holiday in the hospital.  I couldn't be at church so I tried to join in our church service online.  There were multiple times, but people kept coming in and out, or she was in the middle of respiratory treatments, or I just couldn't get on the site at all.  I didn't get to church in any way yesterday, so that brought me down.  Then there was the missing of a nice Easter lunch with friends who had invited us.  Then there was the missing of people in general.  Ron's dad and his wife were arriving in town yesterday and they did come up for a short time later.  Moira didn't seem overly thrilled to be here.  It wasn't a long visit.  Then there was the fact that Peyton just had a really rough day yesterday - very irritable, cranky, in a lot of pain.  I kept thinking of how much pain one can possibly bear watching their child go through and relating that to the Easter weekend - God allowing His son to suffer.  Anyway, I won't go down that road.  I think I have cried enough for one 24 hour period.

Peyton seems to be improving from a respiratory standpoint, which is great.  Also neurologically - she's not "out of it" like she was the other day.  But there are still issues going on that need to be figured out.  One such issue is some swelling and redness that started a couple days ago.  It's in the area above where the splint on her leg stops.

You can see how it's red and puffy.  Overnight last night, the swelling began migrating into the groin area.  The redness extends there as well as towards the back side of her leg going in the other direction.  The edema isn't pitting and there aren't any hard areas.  Her circulation to her foot is good.  The splint isn't too tight.

One thing we've discovered is her albumin is very low.  This might have something to do with why she is pooling fluids.  They are having to be extremely careful because her fluids are higher than they should be, but they can't just give her a diuretic to make it go away.  They have to be very cautious about fluid intake and output.  She does require an albumin infusion.  That will happen today.  They will also do an ultrasound on her leg.

In terms of seeing if there is another fracture, they are very hesitant about doing any additional x-rays...anywhere.  Peyton has had so much radiation between x-rays, CT's, etc. in the past month or two.  They don't want to expose her to any more than absolutely necessary.

Right now, the plan is to do a lot of watching of this swelling, all her labs, etc.  I think they wanted to try to get her home the early part of this week, but I'm doubtful about that happening.  The nurse today thought it might be a good idea to get Peyton into a regular bed rather than a crib, so they are actually working on that right now.  She's got her bed, she's in it, and the nurse and tech are working on getting pads set up on the side rails.  She looked so huge in the crib.  Now she looks so tiny in this huge bed!  I'll post a picture of that next time.

We truly appreciate all the prayers.  As I overheard one of the residents or students saying on rounds out in the hall the other day, Peyton is a "challenging" case.  As you know, when we do go home, it doesn't get less challenging.  It gets more challenging.  They Peyton we knew last week is gone.  This is another decline in her overall condition.

Hospital Life...Days 4 & 5

First of all, today is National Doctor's Day!  Did you know that?  What better place to spend it than in the care of some of our favorites.  Well, ok, I can think of better places to spend it.  That said, I want to take a moment to thank the following for all they have done for Peyton.  I know I'm going to miss some, but here goes:

Cardiology - Dr. A. Savage
Endocrinology - Dr. R. Paulo
ENT - Dr. D. White
Gastroenterology - Dr. R.B. Pillai / Dr. J.A. Quiros
General Peds Team {in-patient} - Dr. D. Mills, Dr. R. Teufel, Dr. P. McBurney, Dr. S. Mennito, Dr. A. Summer
Genetics {Boston Children's Hospital} - Dr. W-H Tan
Genetics {MUSC}- Dr. G.S. Pai
Neurology - Dr. S. Kinsman
Neurosurgery - Dr. S. Glazier
Orthopedics - Dr. J. Mooney
Pediatrician - Dr. J. Quinn
PICU Team {in-patient} - Dr. F. Tecklenburg, Dr. S. Webb, Dr. J. Cochran
Pulmonary - Dr. C.M. Bowman & Dr. I. Virella-Lowell
Surgery - Dr. C.D. Smith

And these are just some of the outstanding physicians who care for Peyton.  There are countless other doctors who have impacted our lives - from when we lived in Houston and when we went up to Boston.  Then there are the countless residents, fellows, medical students, Anesthesiologists, Radiologists, ER doctors, and other specialists who have been consulted along the way.  The above list, for the most part, are the people we see most frequently.  I mention the hospital doctors because Peyton is in the hospital frequently and when she is in she is often in for a while.  These people are people who recognize us even when we aren't in the hospital and we're just passing in the hall on the way to a regular out-patient appointment.  The in-patient doctors are ones with whom I have had the extremely difficult discussions with about what to do in the event that Peyton suddenly needs medical intervention to stay alive.  These people are important.  You don't forget the ones with whom you have had those conversations!

So...a very heartfelt thank you to all the doctors who have cared for Peyton in the past and present.  Saying "thank you" seems insufficient.  But thank you!

~~~~~

Now, on to the update on Peyton's health.

I was so tired yesterday that I couldn't even think of writing an update.  I tried to sit down to do it, but it wasn't happening.

If we back up to Thursday {Day 3}, you know that Peyton was moved from the regular unit to the PICU step down unit.  I didn't really talk about why.  When Peyton woke up that morning, she was extremely irritable.  She'd been getting oxycodone and morphine for her pain as often as she could get it and, yet, she still seemed to be in a lot of pain.  When the respiratory therapist was in, she noticed how unlike Peyton this behavior was, even for being sick.  Later in the morning, another respiratory therapist was in with her for treatments.  As she was working with her, she grew concerned because Peyton was only taking 6-8 breaths a minute.  Instead of being extremely agitated and irritable, Peyton was pretty much out of it.  Not much activity at all.  She went from one extreme to the other.  We didn't know what was causing either one!  She called the respiratory therapist who had been in earlier.  They called in the nurse.  They eventually called in the doctor.  A lot of assessing went on and, long story short, it was decided that she could be better observed in the PICU step down unit, so she was transferred.  They did consult with the PICU team, who did come down to assess her themselves.  This is a good step to take just in case something were to happen that would send her to the PICU itself.  Through all of this, though, we really didn't know what was causing her to be so sick.

The doctors were quite concerned for her on Thursday.  There was a lot of unknown in terms of why she was behaving the way she was.  Rather than just jump to the thought that there was some neurological issue going on, they decided to see if it was all of the heavy pain medications.  They gave her a drug through her IV called Narcan.  This drug basically reverses the effects of any opioids in the system.  She has had no morphine since then and very little oxycodone.  While the drug was being administered, Peyton grew clammy and cold and then began throwing up a lot.  She did become agitated again and her respiratory rate did increase.  Eventually, though, she became pretty sleepy again.  Throughout the time she had been in the hospital, her heart rate had been pretty high.  Normally when she is asleep, it's between 70s-80s and it was in the 150s while she was sleeping.  While awake it's in the 1-teens to 120s normally, but it was anywhere from the 130s to 160s during this time.

The lab work through Day 3 wasn't showing any infectious process, although it certainly seemed like she had some sort of respiratory virus.  They did find that she had more CO2 in her system than she should, so it was recommended that she go on her bipap, even when awake, to help with her respirations.  This did seem to help a bit and her CO2 levels did come down.  More lab work was done.  Additionally, she was sent for a head CT and a shunt series to check to see if her shunt is working properly, and a fully skeletal survey to see if there were any additional fractures.

During the night of Day 3/4, it was decided that Peyton needed to be given IV antibiotics, so those two were started.  We also got the results of the skeletal survey and it did show a new hand fracture.  Nothing is to be done about that in terms of splinting it.

This is Peyton right before her transfusion.

On the morning of Day 4, Peyton's labs were showing that her iron level was very low.  Additionally, her hemoglobin had been dropping.  On Wednesday it was 8.9.  On Thursday it was 8.1.  On Friday, though, it was 7.2.  It was decided that Peyton definitely needed a blood transfusion.  She had never had one before, so this was another "first".  That was started around 3pm and ran over about 3 hours.  At the end of it, she seemed a little more "pink".  Oh, she certainly didn't look "well", but she looked better!  Aside from this, there was just a lot of "watching and seeing" and continuing with the IV antibiotics.

Today is Day 5.  Peyton looks so much better.  Again, not "well", but vastly improved.  She's agitated today.  Last night her right thigh was swelling above the splint.  It had been getting more swollen throughout the day, but is looking a little improved this morning.  Also, yesterday her left index finger became pretty red and swollen.  They did another hand x-ray and it apparently doesn't show a fracture there, but that's not to say there isn't one.  To look at it, I would guess there is one.  The resident said it could take some time to heal before it shows up better on the x-ray.  There really wouldn't be anything to be done for it anyway.  Peyton's hemoglobin is up to 8.6!  They will, of course, keep an eye on that to make sure it doesn't drop again.  They did find some blood in her stool and a small amount of bacteria growing in her urine sample.  They'll keep an eye on all of that as well.

This is Peyton right after the transfusion.  Just a little more "pink" than before.

Peyton looks quite a lot better this morning.  Again - not "well" but if you'd have seen her on Thursday morning, you'd see a huge improvement now.  Our heartfelt thanks to the anonymous donor who gave blood {type O negative} so that Peyton {also type O negative} could receive this much needed boost to her system.  If you are a donor, thank you.  It's because of people like you that she was able to get this blood.  If you aren't and don't have any health reasons not to donate, then would you consider donating?  You never know when you or someone you love will need blood!  As it turns out, I wouldn't have been a match even if I could have done a direct donation.  Our types don't match.  So that makes me even more grateful to donors today!  Thank you!!

Yesterday was Good Friday.  I wrote a post on my personal blog about the fact that Peyton was receiving blood on that day of all days.  You can read that post HERE.

As for today {Day 5}, we'll just watch and see and make sure nothing gets worse.  She was throwing up a lot yesterday and she has already thrown up a little today.  She may have a little bug.  We will not be home for Easter tomorrow.  This will be the first holiday that Peyton has spent in the hospital.  She did, however, get a nice little Easter basket yesterday from the volunteers.  I think Moira will benefit from the contents more than Peyton, but it was very nice to receive.

I will keep you posted as always.  And, as always, prayers are very much appreciated!  Thank you!

Hospital Life...Day 3

I am so tired right now.  It has been a very long day and it's only just after 7pm.

I'm going to make a very long story short.  I'll fill in with more details later when I am not so tired.  Peyton is still in the hospital tonight.  In fact, she was moved from the regular unit to the PICU step down unit this afternoon.  She was just not doing very well this morning.  In fact, we just aren't sure what is going on.

A lot of labs were still pending, but what was coming back was negative or the numbers weren't too bad.  Her CO2 level was actually higher than it should have been, but not dangerously high.  She was sent for a CT scan, a skeletal survey, and a shunt series.  The doctor from the gen peds team consulted with the PICU doctor and they agreed we should get Peyton on bipap to help with her respirations and because of that CO2 level.  She is on bipap now, but she's a bit restless.  Not fighting it, but she's not completely still.

As we don't know what is going on, we don't know when she'll get home.  At this point, I think it would be pretty optimistic to assume we'll be home for Easter.  This visit has been yet another bit of proof that things can turn for her on a dime.

Hopefully we'll know more in the morning.  We appreciate your prayers.

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!

Another New Normal

Yesterday was a long day of playing "hurry up and wait".  We were anticipating being able to bring Peyton home yesterday, but we had a couple things to get out of the way first.

First, it was Valentine's Day.  Peyton has never spent a "holiday" in the hospital.  Of all her admissions, I'm pretty sure this was the first, although it's been close before.  Ok, so it's not a major holiday, but it's a recognized "event" if you want to call it that.  The tech came in to her room at some point during the day and handed me this:

It was also decorated and signed on the other side as well.  Signatures include the tech who delivered the card, various nurses, her Respiratory Therapist, and even the cleaning staff!  Later in the day, Peyton got a big red heart balloon.

Before leaving, two physical therapists from MUSC led a little education session for myself and members of Peyton's home nursing team {one of her home nurses, the business manager, the nurse manager, and one of the other nurse supervisors}.  Everyone wanted to be present for this so that we could all be on the same page as far as how we need to handle Peyton now.  She needs to be handled in a fairly specific way now, considering the multiple current fractures and the brittle bone condition.  They looked at how to handle her for diaper changes, moving her, and transferring her from crib to wheelchair and to her car seat, which Ron had brought up the previous night.  That went very well.  Any concerns or questions were handled, so that was reassuring for me as we prepared to bring Peyton home.  It worked out well {read further down about how Peyton got home}, because the nurse who would be working once Peyton got home was in attendance and she offered to bring Peyton's wheelchair, car seat, and a couple of our bags home with her so she could bring them later when she would come to our house to work.

There was a question of some outstanding labs that were being requested.  These were specifically for the purpose of Genetics in Boston.  Several things are being coordinated between them and our Neurologist here at MUSC.  Dr. K has been wonderful.  I really do like him.  I have a great deal of respect for him.  He has been extremely helpful in coordinating efforts with Dr. T in Boston.  There are lots of hurdles and challenges, especially considering the nature of these tests, being that they are really for research and not part of a treatment protocol.  So, many thanks to him for leading this effort here locally for us.  That said, there are tests which are needing to be done.  When the doctors rounded yesterday, we found out that we're just going to work on getting those taken care of when we see Dr. K in clinic next time.

Then came the discharge process.  There are issues with Peyton's wheelchair as it is right now.  It needs modifications made to it so that it is safer for her.  That said, until that happens, we can't use it safely.  That will happen on Monday, but until then, we can't use it.  The nurse case manager made arrangements for Peyton to get medical transport home.  Once they were into the discharge process, they called the number {this is through Medicaid} and an ambulance was arranged for her.  Now, it's kind of like AAA in that you call a number and they find an available provider to handle the service.  The wait time could be anywhere between 30 minutes to three hours.  Our wait was closer to the three hour mark.  But I wasn't complaining - this was the safest way to get Peyton home.

Around 5:30 the EMT guys arrived in her room with a stretcher.  They simply pulled the fitted sheet off the mattress, and rolled the ends together over the length of Peyton's body, and {holding her carefully} shifted her from crib to stretcher.  They got her all bundled in and strapped down.  They had an oxygen tank right there on the stretcher, so got her hooked up to that.

At the nurse's station, we stopped as there was some paperwork to handle.  I had to dig out Peyton's insurance cards so they could get a copy.  It only took a few minutes.

We then made our way to the elevator.  It's a bit of a maze getting from the 7th floor down to 1st on the patient transport elevator.  We wound our way through the adult ER {changing direction once or twice}, and out the ambulance entrance.  They got Peyton loaded into the ambulance.  I originally was under the impression that it was strictly a ride only, but it was, in fact, full ambulance service.  They hooked her up to the pulse ox monitor and adjusted her oxygen when the EMT thought it needed to be bumped up a little.  He was very attentive to her and very concerned about any bumps we might hit on the road.  He was concerned for her safety and comfort.  Very nice.

This was Peyton's view {I snuck a couple iPhone pics while on board...I was in the back with them}:

We made it home somewhere around 6:30, give or take.  It's funny how an ambulance showing up will bring out the neighbor kids.  We had two or three show up {I think after we actually had Peyton inside}.  When the EMT guys left, I saw them talking to the kids as they put the stretcher back in the ambulance and closed the doors.  Peyton was brought into the house on the stretcher.  As her room is immediately to the right as you come in to the house, it was a bit of a tight turn, but they managed to get the stretcher into her room, right up next to her crib, which is like a hospital crib.  They basically did the reverse process as to what they did to get her on the stretcher.  It all went smoothly and they finished up and left.

Within 30-45 minutes of arriving home, the doorbell rang.  There was a lady at the door with a box.  I didn't recognize her, but she said she was from our church.  She had the biggest smile and was just so sweet.  She had brought us food.  I was just so surprised and, of course, thankful.  I posted something on facebook and it seems that this was food sent over to us from our church's Luke 14 banquet which was happening last night.  If you don't know about that, you can read more here and here.  It is a banquet put on at our church to honor people with special needs - young and old alike.  It is a wonderful event and we have been blessed to attend the past three years.  It wouldn't have been possible to go this year anyway given Peyton's overall health issues, but certainly not this year with her being in the hospital.  That someone would even think to send over a meal for us from that banquet is just so incredibly thoughtful, it brings tears to my eyes.  So, thank you!!

So, we are home now and we are trying to settle in to this "new normal".  I am sure things will feel better in time, but right now it is scary.  I'm scared to touch Peyton or to move her the wrong way, or to know that I could potentially inadvertently break her!  She requires so much more care now - not that she didn't require much at all before!!  It's a new set of challenges to deal with.  It's a new lifestyle.  I have felt fairly tied to home before all of this.  Yes, we do leave the house to go to church or run errands.  We will leave home for a few hours, with Peyton in the care of the nurse.  Recently, we've only brought Peyton out of the house for doctor appointments.  That much will stay the same, but bringing her out for those appointments now will require even more care and effort.  And I feel like I'm hesitant to consider leaving the house for any reason now.  Me - not with Peyton.  It would certainly seem that our pending trip to Boston is off the table for now.

Peyton is fussy today.  She's due for her pain meds right now.  Like clockwork.  You can definitely tell when she needs them.  It's so hard not to cry when I see and hear her like this.  

I want to thank everyone for their prayers and support.  We still need them.  Do we ever!!  We have received so much love from so many people - people we know and people we don't.  From family to friends to church family, we've been blessed by all your support and prayers.  Then there are people who are friends of friends, or friends of friends of friends.  There are friends I've met through blogging who have been praying, and others in the blog world who are but who I don't know as well {or at all}.  I love watching blog stats, and this blog is no exception.  I'm looking at where people are coming from in the world and it's been amazing to me.  So if you are here and are following her and offering support in some way though you do not know us, thank you.  If you are one of her caregivers or know her from the hospital of from somewhere in the community, thank you.  If you are a member of our church - or another church - or are finding your way here because a friend asked you to pray for Peyton, thank you.  However you wound up here, we truly thank you for all your support.  And for your continued prayers and support.  This is an ongoing challenge and there are a lot of new issues which are going to make our world just a little more {maybe a lot more} challenging and we need your prayers.

Thank you for everything.  Thank you for visiting.  As always, I'm going to keep posting on her progress here.  I hope that you'll come back to check in on Peyton.

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!