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!

Just a Quick Update

It's been a week since I updated.  I have to say, really, that there is no real news to report.  I am sure that there are people who are wondering what the latest is, especially when there hasn't been any news in a week, so this is really just to ease your minds that there really isn't anything new going on.

We have concerns over Peyton's foot since coming out of the splint.  I mentioned that last post, I believe.  We are still waiting to get the splint for her foot and the knee immobilizer.  Those should be coming to us at some point this week.

We are again about to be in a state of transition with our nursing.  Peyton's main nurse is a travel nurse and, sadly, she will be leaving us at the end of next week.  In my opinion, she needs to just stay here, but I don't suppose I can make her do that!!  Failing that, she needs to clone herself.  She truly is one of the best home nurses Peyton has had and we'll really miss her greatly!

I am over a week into doing the night shift with Peyton.  There are times, I must admit, where it is very difficult for me to stay awake - at the beginning of the shift.  This has mostly to do with how much sleep I was able to get the day before.  I'm sleeping between about 9 / 9:30am and 1:30 / 2:00pm.  For some reason my body clock doesn't seem to want to allow me to sleep past 2:00 or so, although I did sleep til about 2:30 yesterday!  I require a couple hours {at least} of sleep in the evening.  Combined, the number of hours of sleep isn't great.  However, the quality of the daytime sleep is far better than the evening sleep I was getting prior to making this transition.

As for what I do during the night, it varies.  Peyton is quite often awake most of the night.  She sometimes needs suctioned.  Her pulse ox monitor sometimes alarms and I need to check on that.  Sometimes I need to increase her oxygen.  There are often diaper changes during the night.  Sometimes 1.  Sometimes 3 or 4!  She needs pain meds during the night.  The past couple days, a quick breathing treatment because she's been fairly junky in the morning.  12 hours is a long time to go without a treatment when something is brewing.

Aside from Peyton, this is my time to do what I'd normally have done during the day.  The laundry gets done.  Clothes for the morning are ironed.  The dishwasher gets loaded and run.  I have been knitting a lot for my shop.  My goal is to create a stockpile so, come next fall, I have a good supply of ready-to-ship items.  I blog.  I stalk my Scentsy workstation {shameless plug at 2am...if anyone's interested in hosting an online party, let me know - I can get you started!}.  I catch up on Netflix.  If anyone has any suggestions on things I need to add to my queue, let me know!!

Peyton's next appointment is with the Endocrinologist.  I'm anxious for that.  She needs to have bone density testing done and she'll need to start on some kind of treatment for her brittle bones.  I'm anxious to hear when that will all take place.

I'll keep you posted on how all that goes!

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!!

Back To the ER

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

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

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

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

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

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

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

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

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

Bones

If I could narrow down the list of things that are very difficult on this journey, I would have to say that the worst feeling in the world {as a parent} is watching your child suffer - whether through illness or pain.  Nothing compares to the horrible feeling of watching your child suffer, screaming in pain and watching her in agony while being completely and totally incapable of verbalizing through words.  Nothing.  I honestly am not sure who has cried more - me or her.

right leg - note swelling and bruising of knee and leg

We came in to the hospital through the ER on Sunday, unsure of the cause of the swelling in her right leg and left arm.  Fortunately, one of the residents that night have the presence of mind to order an x-ray on her leg, as that revealed the startling news I shared yesterday - that Peyton had a seriously fractured tibia.  They ultimately ordered a skeletal survey rather than just an xray of her arm.  Her foot xray revealed what could be a metatarsal fracture.  However, it wasn't clear - it could actually just be some sort of defect or deformity.  Whatever the case, it is there.

The skeletal survey was done yesterday afternoon.  It is essentially a series of xrays examining every segment of the body from head to toe.  If the fractured tibia wasn't startling enough, this survey also revealed a fracture of her left distal radius.  Left wrist.  Ok, I know she was experiencing pain of her right leg, which I thought was coming from the chronic hip pain.  While that may be part of it, it was certainly because of the tibia fracture.  But I can tell you for certain that I do not recall her ever {how many ways can I stress "never ever ever" without sounding like a Taylor Swift song??} having any pain in her arm or wrist.  Ever.

The Orthopedist came to see Peyton right before her skeletal survey.  Very shortly after she was back in her room, another was back in the room with someone whose title I forget but I'll call him the "master plasterer". He's the splinting and casting guy.  Peyton's left arm and right leg have been splinted now.  They will stay this way for three weeks.  We can't get them wet.  She can't be bathed.  Only if we see her fingers or toes turning color can we rip everything off for circulation and rewrap.  I don't think I'd like to be going there!  Basically, there is cotton wrapped around, followed by a piece of something dipped in plaster which is affixed to the appropriate spots {bottom of foot up to back of leg just above knee, and back of arm to the fingers} to stabilize everything.  Then it's all wrapped in cotton again and then the outer wrapping.  In a few weeks, we will see Ortho again and they will assess, but probably will cast her leg and arm at that time.  If that's the case, I'll have to figure out how we can do a virtual cast signing for her!

Seriously...how comfortable does that look??  {insert sarcasm here}  Poor baby.  I feel horrible for her.

The Orthopedist came back to see us after this was done.  In a nutshell, her bones are really bad.  She hasn't been tested for bone density yet, but her bones {via xray} look really bad.  Really thin.  The doctor assured me that what happened is not unusual.  She's got multiple special needs.  She's on seizure meds.  She's tube fed.  She has this severe copper deficiency.  She doesn't stand or walk or do things that would promote bone development.  She has many many strikes against her when it comes to bone development.  This is not unusual or even unexpected.  In addition to these fractures, she also has two vertebral compression fractures at T2 and L7.  He said that we needn't feel guilty about any of this.  It just happened.  He said therapy could have done it.  Putting her pants or shirt on or taking them off could have done it.  Whacking her hand on her crib rail could have done it.  However and whenever it happened, it didn't take much effort.  That said, he indicated that this would not be the last time this happens.  And when it does, he said please don't feel guilty - it's not our fault.

All medical evidence seems to be indicating that it's related to her lack of bone development.  However, she came in as a child with multiple unexplained fractures.  If all of the above hasn't caused enough stress.  Yeah.  I'm not going there right now.

On top of all of this, her g tube clogged last night.  She has s g-j tube mickey button.  It's all in one.  The feeds go into the j port and they go into her intestines.  Meds go into the g port on the side and those go into her stomach.  The g is clogged, so she couldn't get her meds.  The doctors gave clearance for them to give them through the j port, but meds don't absorb as well when not in the stomach, so pain is a bigger issue this morning.  It's not fixed yet.  They are getting with Interventional Radiology.  I hope it doesn't have to be changed out.  She just had it changed it on Friday!  They are supposed to be good for 10-12 weeks.  Clearly we're not that far out yet!

Waiting on that to happen today.  Endocrinology is supposed to come see her as well regarding the bone issue.  They'll likely do a bone density test.

I will report back later, but in the meantime, would appreciate your prayers for Peyton's pain.  I am curious/concerned about how well her healing will go since nothing else seems to be done normally.  I am also worried about future injuries and missing them or just the pain that they will put her in.  This is obviously a very new and challenging situation we are being thrust into.  Pray for all of us!

Thanks!!