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!

Back in the Hospital

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

Prayers appreciated. Thanks.

Genetics, Neuro and Seizures, Oh My!

Where to start??  Lots going on.

I have been waiting on a call or email from Peyton's Neurologist (Dr. K) here at MUSC.  The Geneticist  (Dr. T) in Boston had contacted him regarding the results from the lumbar puncture that was done in February.  He had some questions that he wanted input from a neurologist on, so he emailed the doctor here and then Dr. K was to contact me.  Well, I hadn't heard anything, so I made contacted with both doctors.  Dr. T was wanting Dr. K to talk to me so asked that I give him a few more days and if I didn't hear back, let him know.  I didn't, so I did.  Still nothing.  Meanwhile, I don't know what the results were myself!

On Sunday night, Dr. T called me.  Without going into great detail {him with me}, he said that some of her neurotransmitters were low and he wanted Dr. K's input on starting her on some sort of neurotransmitter supplementation.  Who knew there was such a thing??  I still don't know what the end result of that will be.  However, as we talked, it was decided that we really need to bring Peyton back up to Boston Children's Hospital.  There are several specialists that he would like for her to see as well as some tests done {probably including the skin biopsy which, by the sounds of it, should have already been done...but hasn't been}.  She will need to see Dr. T.  He would also like her to see Dr. M, who is the Neurologist Peyton saw when we were in Boston last August.  Additionally, he would like her to see one of two doctors who are experts in both genetics and endocrinology with an interest in skeletal malformations.  He felt like they might be able to offer more insight in terms of treatment.  He also said, ideally, he would like for her to have a hearing test and for her to see an Ophthalmologist who has a special interest in genetics of eye disorders.  That's a lot of specialists!

Here's the thing.  He wants to see her in about a month and a half {if that}.  Definitely before June.  Likely the week of May 6th.  He is having their secretary work on scheduling, so we should know something in the next few days.

Then there's the logistics of it all.  HOW??  Given Peyton's current condition it's going to be a lot harder for her to travel.  Can she travel by car??  Should she travel by air??  How does that get paid for if it's a medical flight??  Is it a charitable cause??  Can we line up her Medicaid here to cover all out-of-state travel costs??  There is a lot of leg work to be done in a very short amount of time.  If she takes a medical flight, chances are only one escort can go.  Well, I cannot handle this trip without Ron being with me.  Yes, I can certainly handle Peyton, but if I expect to eat, or if laundry needs to be done in that week, well, I've got no help!  I'm not saying I need Ron there to be my errand boy!!  Obviously if he is with me, then the burden of caring for Peyton is shared between two people!  If I fly with Peyton, then he's got to drive up, but then he's got to leave before us and then how do I get her and all her stuff to the airport - cause there's going to be a ton of stuff to bring.  Remember last August when we went to Boston and there was so much stuff to bring for her that we couldn't even take our own vehicle??  Yeah, that.  On the other hand, if we drive, then it's obviously a longer and harder trip for Peyton, but at least we're all together.  But she requires oxygen all the time, so when do we do about that?  If we bring oxygen tanks as we've done in the past, we'd need so many because of the rate she's at that there wouldn't even be enough room in our car for all of the tanks, much less everything else we'd have to bring!  I did inquire into a portable oxygen concentrator for traveling.  I need the specific dates of travel ASAP as they only have 3 of these units.  This would replace the need for all those tanks as well as our own larger oxygen concentrator which we'd have to bring for use in the hotels.  She'd need oxygen when out at appointments as well, so we could use it for that too.  Trust me when I say that planning this trip to Boston is more of a logistical nightmare than the last time.  She wasn't on oxygen all the time last time.

So, the Boston trip looks like it will happen - some how, some way.  Please say some prayers that we get everything worked out in the best possible way for Peyton.  Please pray that everything comes together for us to manage this trip.  The Lord knows all our needs for this to happen.

Peyton saw the Endocrinologist {Dr. P} yesterday.  This was the first visit to him since she was hospitalized with the fractures in February.  He would like for her to start on a drug therapy, which would be a monthly IV infusion done in the hospital.  It would be three days in a row once a month.  When he mentioned the drug, Pamidronate, I got a very weird feeling about it as it is one of the drugs my mother received via IV infusion during her cancer treatment.  It took me a moment, but I remembered it was not the chemo drug {and why would they one to Peyton anyway??} but, rather, a drug to help promote bone density.  I wish my mom was here to ask her all about that.  Interesting that Peyton may wind up on the same drug.  We aren't scheduled to start that yet, as the Endocrinologist spoke with Dr. T in Boston yesterday afternoon and there may be some tests and possible other treatment options to try before the Pamidronate.  Dr. P definitely wants for everyone involved to be on the same page before starting anything.  He said it isn't urgent that we get her started on this so if it waits until after our Boston trip, that is ok.

Then we got to today.  Between October 7 - November 5, 2009, Peyton had several "grand mal" type seizures, the first one being over 45 minutes in length {911 was called and she went via ambulance to the hospital}.  Since that time, she has been on seizure meds.  She is currently at the maximum dose of what she is on.  It was recently increased to the current level after we talked to the Neurologist {Dr. K} about her having "focal" seizures.  That is, brief periods where she simply stares off and is unable to focus.  She zones out for 10-30 seconds and then comes back like nothing happened.  Those happen so frequently that we almost don't even notice them.

This morning Ron and I ran a couple errands before I dropped him off at work.  When I got home, Peyton was very irritable.  The nurse described what had happened prior to the irritability.  She said that it seemed like seizure activity, but it was all in her right leg and foot.  When she described what she saw, it hit me that I have seen this exact same thing at least twice in the past 24 hours or so.  She called and was able to speak directly with Dr. K {neuro}.  She described what happened and he agreed that it was likely seizure activity.  She is already on the max dose of seizure meds, so she can't take more.  And he cannot give her another med to take along with this one because it could suppress her respiratory system.  That I know of, this has only happened 3 times in the past 24 hours or so, but it may have happened before that.  But it has only just started happening, so we don't know if this is a temporary thing that will pass quickly or if it's a sign of bigger things to come.  Of course I have emailed Dr. T in Boston to give him this important update to her condition.  I'm sad for her that this is happening.  I have this image in my head of something like what you'd see on a construction site - a sign saying "3 years 4.5 months accident free" {or in this case, seizure free}, erasing the numbers and resetting to 0 days.

So, that is where we are at right now.  I think that's enough.  Don't you??  In case you couldn't guess, we could use prayers in a lot of areas!  We thank you and appreciate your support!

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!

Night Shift

I shared this post on my personal blog today so if you have read about my journey into the world of working nights on that blog, this is the same thing!

As for Peyton herself, there is not a whole lot to report except that she is still keeping her right foot and ankle in a strange position.  Her knee is also tighter than normal.  Her physical therapist saw her at home today and we are looking at getting a different type of foot brace for her {she has been using AFO's for years now}.  She may need some kind of knee immobilizer as well.  More on all of that when I have more information!

Source: imgfave.com via josh on Pinterest

Life right now has me in a very odd place.  I am essentially working a night shift...at home.  Since Peyton's last hospital stay about a month ago, she has been on round the clock pain meds.  This means she gets them every 4 hours - even through the night.  What this means for me is that I am having to get up once in the middle of the night to make sure she gets them.
It's not just the pain meds.  Since Peyton came home, she has not been sleeping well at all.  That means that I haven't been either.  I have been jumping out of bed multiple times a night to check on her as she is fussing, needs changed, needs suctioned, and so on.  It makes for an extremely poor night's sleep for me.  I would either try not to nap at all during the day so that I would be good and tired at night, hoping to somehow get a better night's sleep, despite the interrupted nature of it, or I would nap during the day to catch up on some sleep but then would be unable to fall asleep at a normal time in the evening.  This made for some very late nights, coupled with interrupted sleep.  By late last week, I was finding myself unable to function properly during the day.  Something needed to change.
Ron and I went to lunch last Friday.  We had already decided that he was going to stay in Peyton's room Friday and Saturday night so that I could get a better night's sleep elsewhere in the house.  Once we got talking, though, we decided that what would probably work best would be if I worked a "night shift" type of situation with Peyton.  With no preparation for it, I did that beginning Friday night.  I did manage to get a few hours of sleep prior to getting up for the night at about 1:30 or so in the morning.  I stayed up through the night and went to bed at 9am Saturday.
I'm nearly through my fourth night shift in a row as I write this.  It's challenging, that's for sure.  But it seems to be working out.  Peyton has not been sleeping through the night really.  One night was ok, but the rest of the nights so far have been sleepless ones for her.  I guess I would rather be awake and having to go in her room and take care of her needs as they arise than to be trying to sleep through the night only to be constantly awoken by everything throughout the night.
Right now, as we're trying to get used to this, I am sleeping between about 9am-2:30pm.  Moira gets off the bus at about 3:30 or so, so I have to be up for her.  For some reason, I can't seem to sleep past 2:00 or 2:30.  This alone is not a full night's sleep, so prior to beginning my new nighttime ritual, I require a nap.  This has generally been between 8:00 or 9:00pm and anywhere from 10:30pm to 1:00am.  I am trying to be up for the night earlier because Ron is staying awake until I get up.  Since he has to work in the morning, I want him to be able to get to bed at a decent hour.  I got up at about 10:30 last night.
It is amazing what you can get accomplished during the night when there are no distractions.  I'm fairly tired as I adjust to this, so I'm not getting nearly as much done this time that I did the first night.  Still, though it isn't ideal, I think that this is the best solution for us right now.  Of course, there will be things that come up that will affect my schedule, like Sunday morning church or Moira's art class later this afternoon after school. We need to figure out a way to work around everything as it comes up. Peyton's nurse generally arrives at 8 or 9am, so I have between then and 3:00 or so to sleep during the week.   Ron can handle Peyton for a couple hours after the nurse leaves at 8 or 9pm, giving me an opportunity for another rest period.  Right now, there really isn't a good way to get 8 solid hours.  This is also very strange to me as I find myself doing things backwards.  I am still showering at 6am and am getting dressed for the day, although I'm ditching the make up for now unless absolutely necessary!  Then I go to sleep a couple hours later - in my regular clothes.  I'll get my pj's on when I rest later in the evening, and then am comfy in them while I am up overnight.  I'm not sure when I should eat what meal because I'm sleeping through lunch and I don't want to eat anything large before going to bed so early in the evening.  I am drinking my coffee at about 3:30 or 4:00 in the morning.  It's all a little confusing!
All in all, I'd say that this is working.  We'll see how long I can keep this up and how effective it really will be for getting regular household things accomplished.  I did scrub my bathtub at about 2:00 this morning, so I am getting stuff done!
Do any of you have experience working nights?  How do you adjust your routine so you are getting proper rest?  Do you have any advice you could possibly share?  Many thanks!!

To the ER We Go

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

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

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

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

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

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

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

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.