Hospital Life...Day 35

Today is Day 35.  If you missed yesterday's post, you can read that HERE.

Today Ron and I celebrate 13 years of married life.  He will be up here at the hospital soon and will be bringing a nice dinner.  I hope.  It seems like we are in for a storm tonight.  This isn't exactly what we'd had in mind when we were thinking about our upcoming anniversary a couple months ago.  I am so grateful for the husband that Ron is and for the father he is to our children.  We have faced some pretty serious challenges over the past 12 of those 13 years.  We have faced far more than people our age should have to face.  We've faced a lot more than many people face in a lifetime.  After 13 years, we remain together.

But this is about Peyton...

Peyton woke up sounding more junky than she has been.  On rounds, the doctors felt that it might be a good idea to get a chest x-ray because of how she was sounding.  Peyton is on two pretty "big gun" antibiotics right now, so the chances of her having a new infection would seem slim, but this is Peyton, so you never know what's going to happen with her.

As far as pain control goes, I think Peyton is in a better place now than she has been.  It is good to see her more comfortable.  She still has some moments of intermittent pain, but overall, I think things are improving.

Peyton did have that chest x-ray and the resident came in a while later to let me know that they were going to have Cardiology come in and take a look at her.  The x-ray showed that there seems to be some fluid around her lungs.  This is something that we've been fortunate to not have happen so far.  For now, Cardiology is increasing one of her current meds to see if it helps reduce the amount of fluid.  Hopefully that helps.

There's always something.  Just when you feel like you are making some ground in one area, something else comes up.  As always, we appreciate your continued prayers for Peyton!

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 28

Today is Day 28.  If you missed yesterday's post, you can read that HERE.

I can't believe we've been here four weeks already.  In a way it feels every bit of that, but in a way it has flown by.  It was just supposed to be one night for pain control, yet here we still are.

Peyton's pain management from Sunday {Day 27} seemed to help somewhat.  It, at least, bought her some time to get to today when the person we all rely on for pain management issues would be back in.  The PICU doctor had some great recommendations yesterday and we are grateful for the comfort that those recommendations brought Peyton yesterday and last night.  By the time we got to this morning, though, we knew the plan needed some tweaking.

Today was our first day with Peyton's sixth attending of this admission.  I'm not sure how many we have yet to go through, but I imagine one day we'll begin seeing some repeats!  The doctor who came on today is wonderful.  I wouldn't expect any less!  Peyton has actually been under her care on previous admissions and I really do like her a lot.  I was invited out into the hall during rounds.  The rundown on Peyton, as given by the resident, is quite lengthy.  Once he was through, you could tell that the new attending wanted to really dig in to see if there is anything overlooked, anything we might need to re-check, anything that was worth repeating, or worth consulting on again.  Peyton was sounding more junky today, so there was the thought of possibly starting her back on another antibiotic for that.  Then there was the issue of her pain control.  She was concerned about whether there could be another source of the pain.  She also was wondering if some of her pain was from stiffening muscles.  You know when you have an injury and you tense up to protect the area and you get achy muscles from the tensing up?  She was wondering if there is some element of that with Peyton's pain in her leg.  It makes sense that there could be.  After a lot of discussion, they decided to add Ativan to her regimen.  It helps with spasms, so they thought it might be beneficial.

Today is also the day before Peyton's gallium scan.  What we thought was going to happen was that the day before {today}, Peyton would get an injection of the radioactive tracers that would be used for the scan tomorrow.  They have to be in the system for so long in order to concentrate around areas of infection, inflammation, fracture, etc. so that they will be highlighted in the actual scan.  So, we thought that the injection would be something done up in her room.  As it turned out, it was a completely different process than people thought.

There are actually three parts to the process.  The first two were done today {Monday}.  The third is the actual scan which will be tomorrow {Tuesday}.  All parts involve transporting Peyton down to Nuclear Medicine.  She can remain in her bed for transport, so that's good.  There are a lot of logistical things to work out for her for this process.  I am quite sure that her process is not exactly what your average person would go through due to her immobility, pain, and brittle bones.  The technician even brought in the actual radiologist at one point so he could see what exactly they would be dealing with for the scan tomorrow.  

Parts one and two were done in the same room down in Nuclear Medicine.  These parts were about 2 or 3 hours apart.  In part one, Peyton was injected {through her port} with a radioactive contrast.  Then a huge machine was moved in place over her and then very carefully positioned over top of her.  It took a long time to get everything set up because there is such a high level of concern for her and her brittle bones.  The technician used a remote control to guide it into place, squatting down so he could see exactly how close it was to Peyton.  It came within maybe a couple inches {if that} of touching her. 

Once it was in position, the contrast was injected and we waited while it had a chance to do its thing.  Pictures were then taken of her lower half.  I am not sure at all what they can tell from the images obtained at this stage.  Perhaps they are just to get a base line of some sort.  I am sure they are used in conjunction with the images they will get from Tuesday's scan to be able to read it properly.  Peyton wasn't thrilled as you can tell, but she was also half out of it on Morphine and Ativan.

Another view of the machine to give you an idea of just how close to Peyton it had to come.  Yes, Peyton is under there!

That was done this morning.  Around 1:00 or so this afternoon, we went back down to Nuclear Medicine for part two.  Peyton had fallen asleep before that and, thankfully, was getting some relief from her pain.  She opened her eyes momentarily when her bed wheeled over a bump in transit, but she stayed asleep almost the entire three hours we were down there.

Part two took a lot longer than planned.  Peyton was positioned as above in part one to get more images.  The first thing the technician noticed was this:

Peyton had a very wet diaper.  No good for the images.  She needed to be changed.  We didn't have anything, so the nurse had to coordinate getting stuff tubed down to us from the unit.  In the meantime, as she was checking Peyton's diaper, it turned out it was bone dry.  Her belly, on the other hand, was very distended and firm.  The diaper change was nixed in favor of tracking down a kit to put a catheter in to drain her bladder.  One of the side effects of Morphine can be urine retention.  I'm not sure if this was the issue or not, but likely it was.  She was cathed and it took forever to drain her bladder.  It was incredibly full.  It would not stop draining!  It finally did and when she was set back up for the imaging, they could still see a portion of her bladder!  However, it was good enough to go ahead with the images.

Again, I am not sure what the images from this part mean in and of themselves.  I suspect it will go hand in hand with the images from part three tomorrow in order to interpret what is going on.  As you can see, Peyton's body is glowing.  I am not a radiologist.  I am not a doctor.  I don't pretend to know what I'm talking about and do not have any skills in the area of reading radiographic images.  I suspect the same of most of you reading this.  I cannot tell you from the images what the highlighted areas mean.  This was only a couple hours after that first injection, so I am not sure what this image means in relation to the time elapsed.  However, you can definitely see a greater concentration of this particular contrast in her right leg, the leg that has been the source of everyone's concern.  I cannot make any comments on the image except to say that you can clearly see a large bulging area in that right thigh.  That's all I will say about that.  I don't think there's anything else to say at this point except that what we saw was certainly interesting and it will be good to hear the radiologist's interpretation of the scan after tomorrow.

Remember how Peyton was sleeping?  Remember how I said we were down in Nuclear Medicine for three hours??  Peyton slept almost the entire time.  Through all of the positioning of the equipment, through being cathed to have her bladder emptied, through having her belly mashed on to empty her bladder, etc.  After all the imaging, she had to get the injection of gallium.  We had to wait a while on that.  It was given and that is what is working through her body even now so that we can get the images we need in the gallium scan tomorrow.

The whole experience made for an interesting learning experience as Peyton's diapers now contain radioactive material.  The technician had to get on the phone with the doctor in charge of radioactive safety in order to be able to tell us how to properly and safely dispose of Peyton's diapers and anything which may have come in contact with the contents of said diapers.  In fact, he needed to consult one of the physicists here to properly inform the nurses!  Interesting stuff.  Oh, but if she were a typical child who could get up and go to the bathroom herself...yeah, that could just be flushed down the toilet.  Enjoy your next glass of water as you ponder that.

It was a long, tiring day.  A lot of time spent out of the room, so that was different.  Ron spent much of the day up here with me.  Well, by himself really since I was down in Nuclear Medicine with Peyton for a while!  He worked from here.  He was able to run out and grab some lunch at a nearby cafe - a place we'd received a gift card for.  {It was wonderful, by the way...thank you!!}  We also received a couple visitors - Peyton's special ed teacher as well as a friend of mine {and former special ed homebound teacher for Peyton}.  Grateful for the dinner she provided here for me!  We are also enjoying some lovely fresh flowers in our room courtesy of Ron's cousin and his family:

As we wait on tomorrow's scan, know that Peyton has developed a fever.  It's come down a little.  She is also quite junky and some really nasty colored secretions are coming up.  The resident here tonight wants to switch that second antibiotic to something else and treat Peyton as if it is a hospital-acquired pneumonia.  He was in a while ago to let me know that the new attending who is on the case today had called in this evening to check on Peyton.  Amazing the level of concern everyone has for her!  She also tracked us down while we were in Nuclear Medicine this afternoon.  Her wheels are certainly spinning trying to figure things out.

Tomorrow is the scan.  Please pray for continued relief from pain 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 21

Today is Day 21.  Three weeks.  If you missed the Day 20 update, you can read that HERE.

I am writing this update early today because we could use some serious prayers for Peyton.  This morning when the resident came in, we pulled back the sheet to look at Peyton's leg.  Her thigh went from simply looking swollen and slightly red to looking like this:

She paged Ortho and an ultrasound was ordered.  She hasn't had the ultrasound as of yet, but hopefully she will soon.  The team just rounded.  The nurse had {per Ortho's instructions} removed the splint.  When the attending looked at her leg, her leg actually looked worse than what you see above.  This goes down to her knee.  It's hot to the touch.  Looking at the x-ray from yesterday, there is a large hematoma present but the concern right now is that there is infection settling in there.  Depending on what the results of the ultrasound are, she may also require an MRI which, of course, would require sedation.  That is a concern for her.  She is a high risk for surgery should that be necessary.  But, as my mother would always say, "Don't go borrowing trouble."  One thing at a time.  In the meantime, the doctor is going to start her on a second antibiotic to cover any sort of infection brewing.

As we wait for an ultrasound, please say some prayers for her that this isn't anything major that would require surgery.  It may even be that it just needs drained, but that's still a risk.  I wanted to post this now so we could get all of Peyton's prayer warriors going with this in mind this morning.

Thank you so much.  We appreciate it and I will update later when we know more.  

{The follow up to this post can be found HERE.}

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 18

Today is Day 18.  If you missed the Day 17 update, you can catch up HERE.

Today was, again, another quiet day.  The past two days have been "decent" days, all things considered.  I would say that today wasn't quite as good as those two days, but it was still "ok".  Peyton just seemed a little less willing to give up any smiles for people today - not even when Dr. K tried to get her to smile.  To me she looked a little more purple around they eyes than she has looked lately.  I'm not sure I can put my finger on exactly what the difference is with her, but she wasn't the same today.

I was surprised to see the Ortho resident this afternoon.  He came in with a box which I recognized as one containing a new splint.  He found one that was shorter than that blue one he'd put on her and rigged to fit her previously.  The splint itself looks different but seems to be a good fit for her.  The actual back of the splint is flat as opposed to being bent at the knee to position her leg.  Instead, there is a long foam triangle-shaped wedge that sits inside the splint with the "point" of the triangle being behind her knee.  Her leg is in a good position.  With this splint, everyone can very easily see how her leg looks.  You couldn't at all with the first one.  With the blue one, her leg was covered, but you could open the splint up to look at her leg.  This is great, in my opinion.

You can see for yourselves now just how swollen her leg is, particularly from thigh down through her knee.  Her lower leg is a little swollen, but nothing compared to the top.  Her foot is also a bit puffy.  Some of that puffiness could be related to the overall edema she's been having.  A lot, I'm sure, is fracture-related.  It's a little hard to tell in the picture below, but her thigh is still swollen and red.  In fact, it looks a little more so tonight than it did earlier today or yesterday.

This is Peyton's knee.  It {among other things} makes me so sad.  Her poor leg just looks so sore.  I cannot even imagine.  I've never broken a bone so have no idea how she must feel.

Considering we are likely to be sticking around a while longer, Ortho is going to have more x-rays done on the 15th.  The 16th actually will mark 3 weeks since we took Peyton to the ER with the fracture.  This is about when we would have followed up in the Ortho clinic as an out-patient after the ER visit and one night stay for pain management {HA!!}.  I don't see Peyton being out of this splint for a while.  

In other areas, some of her lab values are looking a bit improved, so that is good.  Hopefully the TPN is helping.  There's still a little ways to go before we decide that, yes, it is {or no, it's not} working.  They have to get everything to a stable level so they know what her TPN formulation should be.  We are back to the yellow TPN tonight.  Apparently it's yellow because of the addition of multi-vitamins.

There are some new residents on the team now.  One came in today and discussed with me some of our wishes for Peyton in the event of a crisis situation.  This has been an on-going topic of discussion for quite some time.  It was actually first brought up with Dr. T a couple of years ago during one of Peyton's many respiratory illnesses.  This has been on our minds for a long time, but we're just trying to make sure now that we are acting in her best interests considering all we are dealing with.  Since there are new residents, they want to make sure they fully understand everything.  They also want to be able to pass the appropriate information on to the residents or other team members who would be caring for Peyton at night or on weekends.

A lot of people are asking how I am doing and are expressing their concern for me.  Please know that I am doing alright.  I won't say "great" because I'm not.  It is not an easy situation to be in day in and day out.  I am tired but I am fine.  I am getting sleep.  I am actually getting more {and better} sleep than I was getting at home.  The couch I sleep on here isn't perfect, but it's fine.  My back is holding up fine.  I am eating.  I do from time to time step outside this room.  Not often, but it has happened!  I know people here are concerned for me too and I appreciate it.  I really am doing as ok as one can be right now.

Thank you to my next door neighbor...who is currently my down the hall neighbor {her baby is in another unit on the same floor right now}...for bringing lunch to me today.  It was so good and I was so hungry I didn't even get to snap a pic before eating it up!  And to one of the nurses who brought me a little Friday afternoon pick-me-up...thank you!!  You know me well!

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!

To the ER We Go

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

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

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

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

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

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

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

Healing

Today was Peyton's follow up appointment with the Orthopedist after discovering she had multiple fractures resulting from extremely brittle bones.  Ron was going to come home from work to accompany Peyton, myself and the home nurse.  The nurse, however, suggested medical transport since Peyton needs to be on oxygen and we don't really have any oxygen tanks at home to take with us.  That's kind of a problem! She got it all set up and we took an ambulance to the appointment.  I did, however, sent texts to a couple of my neighbors telling them not to freak out if they saw an ambulance show up at our doorstep!  It was an extremely convenient way to make this trip today.

Once at MUSC, I checked in at Orthopedics.  We were then sent down the hall to x-ray.  They were able to do everything with her still on the stretcher she came in on, so that made things very easy.  They x-rayed her left arm and right leg.  The x-rays below are kind of funny looking because you can see the padding from the splints which were still on her arm and leg.

Peyton's little fingers were curled in the x-ray above.  In the one below, you can see the extra padding on the right side and around her thumb, which is part of the splint, not some sort of defect!  Recall that she had a wrist fracture.

I can't make out the fracture too well in the x-rays above.  However, when it comes to her leg, I can tell where that fracture is.  It's almost right at the top of the tibia.  again, all that stuff on the right side from top to bottom is the extra padding from the splint.

After x-rays were done, we went back to Ortho down the hall.  We were put in a room then moved to the cast room.  The assumption being that she would be swapping out splints for casts.  The doctor popped into the room and said everything looked like it was healing really well.  Remember, the wrist fracture {back around 2/14/13} was said to be about 3-4 weeks old and the leg fracture just days old.  We fully expected her to get casts at this point.  Instead, she is healing well and the splints were removed and no casts were put on!!  She is free!!  I'm still a bit shocked over that.  Now, all that said, I am extremely nervous about her not having any protection on those bones, but Dr. M said that short of putting her in a bubble, there's not much we can do to protect her bones anyway.

We returned home and Peyton actually spent some time in her wheelchair for the first time at home since she came home on 2/14.  She also spent some time on the floor on her play mat.  She hasn't been very active at all lately.  She made no attempts to roll at all, but she did fall asleep eventually on the floor.  She did a pretty good job of fighting of sleep for a while!  Here she is below, free of splints {her right leg/left arm...but in the picture look on on the right side for the arm, left side for the leg}.  In person you can tell there is still some swelling in the arm, but it's not horrible.  Her leg is considerably less swollen.  It is still fairly bruised though.  We'll be keeping up with the pain meds round the clock for sure {not that we haven't been as it is}.  I can only imagine that being free from the splints might cause her to have more discomfort now that she is able to move freely.

Please say some prayers that she continues to heal well and that she doesn't re-injure her arm or leg or injure anything else!!