A Year Ago Today...

One year ago today, I wrote a hurried blog post requesting prayers for Peyton as she as back in the hospital once again.  You can read that post HERE.

Earlier that same day, I'd posted a long post about genetics and the possibility of going back up to Boston for a second visit.  You can read that HERE.

As I sit here right now, I am simply amazed that it was one year ago today that Peyton left our home for the last time.  One year ago today, I knew that there was something just not at all right with her.  She was far beyond her normal "self" and was in pain.  It broke my heart each day to see her in pain because she could not communicate to me where she was hurting or what exactly was wrong.  Her health had been declining noticeably for a period of a few months, but this day was a day where things just weren't right at all.

I distinctly remember this day one year ago.  Peyton's nurse and I hurriedly got Peyton ready.  Ron, Moira, Peyton, the nurse, and I loaded up in the car.  Ron dropped Peyton, the nurse and I at the door to the children's hospital ER.  We sat in the ER for ages as the doctors tried to piece together what was going on.  They did discover a new leg fracture, in the same leg as she had had a fracture just a month or two earlier.  "Copper bones", as they would become known.  That's what Moira called {and still calls} them.  Brittle bones caused by a severe copper deficiency.  We wouldn't know that at that time a year ago, really, but that's what it was.

A year ago today, Peyton had a broken leg.  A year ago today, Peyton was admitted to the hospital overnight for pain management.  A year ago today, we had no idea we would spend the next 40 days in the hospital together - she and I for 40 days {I did not leave her to go home once.  I left her room fewer than 10 times in 40 days, for a total of probably less than one hour altogether.}

I did not know how significant our leaving home was on that day one year ago.  I didn't know then that not all of us would return home.

One year ago today, our faith and trust in God began to be shaped in a way it hadn't been before.  Yes, we had tremendous faith and trust in God at this point in our journey.  A year ago today, we began the most painful and difficult part of our almost 7 year journey with Peyton,  It would test and sharpen our faith and trust in God.  It would bring us closer to God than ever before.

One year ago today, our life began to change forever.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  {Romans 8:28}

Six Months & A Remembrance Service

Today marks six months since our sweet Peyton passed away.  Six months seems absolutely incomprehensible.  It is surreal to think that so much time has passed.  I have said it before - no matter how much time has passed, it all at once seems like an eternity yet seems like it was just yesterday.

It is also very hard to believe that we are now in November and are charging full steam ahead into the holiday season.  I don't expect this to be an easy time for us.  For myself, this month I will celebrate my first birthday without Peyton.  For our family, we will celebrate Thanksgiving without her present with us and then Christmas next month.  Then it will be a new year.  That is so much more difficult to comprehend.  It has always been difficult for me to transition to a new month wherein it is a new month that Peyton has not been present with us.  I can't bear flipping that last calendar page and beginning a new year that she will not physically be a part of with us.

On November 1st, Ron and I attended a Service of Remembrance at St. Luke's Chapel at MUSC.  One of Peyton's home nurses attended with us.  I was honored that she attended with us as she was the last home nurse to work with her.  She moved out of town shortly after Peyton went into the hospital and wasn't here when she passed away.  She has since moved back and I am so grateful she could attend this with us.

The service was so touching.  It was as much for MUSC staff members as it was for the families grieving the loss of a child.  I have no idea when the other families suffered their losses, but my heart broke for them as it did for my own loss. The service opened with words from a Chaplain from MUSC's Pastoral Care group as well as from the Administrator of MUSC Children's Hospital.  Similar to Peyton's funeral service, there were so many comforting words spoken, yet so few that I could recall to memory right now.  The Administrator spoke to the medical staff, addressing the fact that this year has been a challenging year with some very difficult cases.  I believe I know one of the cases to which he was referring.  I know what it is like to be a grieving parent.  I do not know what it is like to be in the shoes of the medical staff who work with patients like Peyton.  I can honestly say that my heart breaks for them in the losses that they must endure in their profession.

A beautiful poem was read.  I have heard it before, but it is always touching and always brings tears to my eyes:

"We Remember Them"

By Jack Riemer and Sylvan D. Kamens | Poem

In the rising of the sun and in its going down, we remember them.
In the blowing of the wind and in the chill of winter, we remember them.

In the opening of the buds and in the rebirth of spring, we remember them.
In the blueness of the sky and in the warmth of summer, we remember them.

In the rustling of leaves and in the beauty of autumn, we remember them.
In the beginning of the year and when it ends, we remember them.

When we are weary and in need of strength, we remember them.
When we are lost and sick at heart, we remember them.

When we have joys we yearn to share, we remember them.
So long as we live, they too shall live, for they are now a part of us, as we remember them.

After this reading, the Chaplain spoke again.  This was followed by the reading of names of children who have passed away.  As the names were read, candles were lit in the child's honor.

Peyton's name was the last name read in the first of three groups.  Of the three individuals who read the names, only one had a history with Peyton.  It was one of the pediatric hospitalists who worked so hard to figure things out for her and for us.  It was this doctor whose service Peyton was on for the first eleven of those forty days in the hospital.  It was this doctor with whom I first discussed the matter of "if" Peyton would be going home - not "when".  It meant a great deal to have this connection at the service.

I do not know what period of time all of those names covered.  But there were far too many children's names on that list.  One name would be too many.  There were eighty names read.  Eighty candles lit.  Eighty children for whom many hearts have been broken.

There was a slide presentation incorporating pictures some family members submitted in advance of the service.  Tears streamed down my face as I saw the faces that accompanied some of the names read earlier.  What was shocking to me was that not all of these children were little children.  Yes, some were infants.  Some were young like Peyton, who was 11 days short of her 7th birthday.  But some were older, wearing a cap and gown in their photo.  Some children appeared to have some sort of medical issue, having obvious scars or special need.  Others looked completely healthy and vibrant in their photos.  I wondered what their stories were.

The service was beautiful.  It did bring a sense of peace to me on some level.  I know that it did a lot of good for me to see people again.  I saw several doctors and nurses who worked with Peyton as well as a respiratory therapist and one of the people with hospice.  It was really nice to catch up with some of them at the reception that followed.  For me, one of the losses represented in Peyton's passing is the loss of the connections with the medical community she was a part of.  Once she passed, there were no more appointments.  No more trips to the ER.  No more hospitalizations.  Imagine having a kind of relationship with several people and then having all ties immediately severed.  Not because you don't want to see them, but because there is no need.  Peyton was the reason I saw them.  It is very strange.  I miss these people.  So for me, it was beneficial to be able to see them again.  I had not seen one of the doctors since the family meeting we had the Wednesday before Peyton passed in order to discuss how we would proceed.  A meeting I would not wish on anyone.  One of the nurses was one of the last people I said goodbye to before walking off the unit after saying our goodbyes to Peyton the morning she passed.  One doctor I hadn't seen since a day or so prior to her passing, when we were trying to tie up loose ends with Children's Hospital in Boston with regard to eventual autopsy issues and the genetic research to be done after her death.  There is a conversation I hope no one ever has to have {not to mention the paperwork needing to be signed}!  I suppose it's like these are the last memories I have of my involvement with Peyton's doctors and nurses.  While Peyton is now gone, it is nice to have a more positive encounter to replace those final memories - if you can call a remembrance service a "positive" memory.  It is.  It's just the circumstances.

Perhaps the timing of the Service of Remembrance was good for us.  It fell just 3 days prior to Peyton's six month anniversary.  Six months seems pretty significant - more so than three or four months felt.  I am grateful to MUSC Children's Hospital for this event honoring not just Peyton, but the many other children who have passed.  The care we received while we were in their care was beyond what I could have expected.  That they continue to care for families like ours means so much.  I am touched once again by the level of care of the medical staff at MUSC Children's Hospital and am certain that Peyton could not have been in better hands.

Hospital Life...Day 38

Today is Day 38.  If you missed yesterday's update, you can read it HERE.  If you haven't read it, you may wish to start there before continuing.

Through the night last night, Peyton's breathing sounded very "wet" or "junky".  More than her norm.  Her oxygen saturation also dropped into the low 70% area a couple times.  There were a few things which, on discussion with one of the members of Peyton's medical team, were felt to be signs of worsening pulmonary edema.

I don't know how well Peyton slept last night, but she really did not sleep at all today.  She was very restless and uncomfortable.  For a while now, she has had a constant motion of her left leg {the one that isn't broken}.  Yesterday it was her arms as well.  Today it was her body.  She wasn't crying, except during diaper changes, but she wasn't comfortable.  I just wanted her to be comfortable.  To be still.  It took a lot of effort to get her to a point where she was more comfortable.  Even now, hours later, that leg is till going.  She's not moving around as much as she was, but still not totally settled.  I would love for her to just sleep.

Moira stayed home from school today.  She is understandably upset about what is going on.  She and Ron came to the hospital around noon and spent several hours up here.  Moira was able to speak with one of the child life specialists here.  We are happy that the things she is expressing are all very normal.  We hate that she's going through this - we all hate to be going through this.  When I first saw Moira, she looked upset and came over, gave me a big hug and asked me why Peyton has to die.  I cannot answer that. It just kills me that my child is having to go through this.  Not long after that, though, she was playing a game on my laptop.  Every now and then a random question would surface, but she was fairly content to do her own thing most of the day.

We were blessed with some visitors from church today.  From prayer to song and music, to having one of our pastors visit, to having a couple from our small group here, it was all very much appreciated and much needed today.  We are very grateful to have such an incredibly supportive church family as we have no family here locally.

I don't know if I will write daily updates at this point.  I did want to let you know how Peyton is doing.  It seems things accelerated on their own before we had to "enact" anything from our conference we had yesterday.  Our primary goal now is for her comfort.  As always, and especially now, your prayers are much appreciated.  Please also include our families in your prayers as they will be starting their travels this way soon.  As I write this, I know my dad is leaving in the morning to head down from Canada.  Prayers for peace for our family are much appreciated.

Hospital Life...Day 37

Today is Day 37.  If you missed yesterday's post, you can read that HERE.

Today we had our family conference.  Ron and I attended a meeting with several from Peyton's medical team: a nurse practitioner {she has been working with us for the past few years who deals with pain management as well as supporting us by coordinating with the medical team when Peyton has been admitted}, one of Peyton's primary nurses from the unit, two of the residents from Peyton's current team, the attending from her team, one of the attendings who has been with Peyton once before on this admission and who is scheduled in the next week or so to be back on the rotation}, the first attending who Peyton had on this admission{who also happens to be someone who knows her quite well, having worked with her for the past few years}, one of the doctors from the PICU upstairs, and a nurse from hospice.

We're 37 days in to an admission which has no end in sight.  Peyton has had numerous issues.  We have been going around in circles, with new issues popping up and old ones resurfacing.  There is no easy way to say this, so I will just say that after much discussion between Ron and myself and over the past days with the medical team, we have reached a point in time where it is appropriate for us to shift our focus to palliative care for Peyton.  I cannot say what this means for her in terms of time.

As we transition into this next phase of care for Peyton and season of life for our family, we truly covet your prayers.  This has not been an easy place to come to and this has been a long and difficult journey this past month.  Moira is now aware of what is happening, so please pray especially for her.  I cannot imagine being 9 years old and going through this.

Thank you to all of the medical team here at MUSC who was with us in our meeting today.  While the decision was ours to make, you helped to bear the load as much as you could.  We appreciate your thoughtfulness and your words of comfort and reassurance.  We appreciate your time and willingness to be a part of this process with us.  We appreciate all that you have done for Peyton from a medical standpoint but we also appreciate you showing that it's not all about science and medicine - that there is a compassionate side to what you do {which we have felt all along}.  We appreciate that you are standing there crying with us through this pain.  Thank you for the honor and dignity you are affording Peyton during this time.

Hospital Life...Day 36

Today is Day 36.  If you missed yesterday's post, you can read it HERE.

Spending an anniversary in the hospital {yesterday} was memorable, but not in the way you'd want it to be.  I am looking forward to many {and better} anniversaries in the future.  Next up...Peyton's birthday.  She will turn 7 on the 15th.

We are thankful that we seem to be in a good place with Peyton's pain control.  It's taken a lot to get to this point, but I am {at least for the time being} comfortable with her level of pain.

This morning on rounds we found that, once again, some of Peyton's labs are not where they need to be.  One of the ones that is off again is her albumin.  You may recall that we had issues with that earlier on before Peyton started on TPN.  She required an albumin infusion at one point.  They are hesitant to do that just now.  I think they want to wait to see what the next 24-48 hours bring where that is concerned, but it is definitely something they are keeping an eye on.

With the new pulmonary edema discovered yesterday, they have increased her dose of Lasix.  This is essentially a diuretic which Peyton was prescribed months ago at a lower dose by her Cardiologist because of her heart issues {mitral regurgitation}.  It is supposed to help pull fluid off the heart and lungs - when there is increased fluid, it can cause everything to have to work harder and it can cause problems.  Since there is evidence of fluid on her lungs now, they've increased the Lasix dose to hopefully help that out.  The problem is that it can also cause her potassium to go out of whack.  You might also recall that we have had several instances during this admission where Peyton required IV boluses of potassium {which is not a good thing}.

As you might be thinking yourself, it seems like we have come around full circle with some of Peyton's issues.  It seems like we keep going around in circles treating issues, finding new ones, treating those, going back to a prior issue, finding a new one, etc.  Coming back to having the issues with some of her lab values is a disappointment.  Having the pulmonary edema is certainly a concern.  The respiratory issues {decreased respirations at times} as also concerning.  There is a lot going on and none of that has anything to do with the issues with her leg that we're still dealing with!

We are having another family conference with some of Peyton's team here tomorrow.  We had one early on in this stay.  There will be a few different faces, since the residents and the attending are not the ones who were on the case back then.  But they are people who have been working with Peyton for a while now.  It will be a good opportunity for them to lay everything out for us, perhaps provide some options, and mostly to address any questions and concerns we have.

That's about all the news for today.  It's quiet since Peyton's been so sleepy today, so I thought I'd get this written earlier than later.  I'll update again tomorrow.

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 34

Today is Day 34.  If you missed yesterday's post, you can read that HERE.

Prior to this admission, Peyton's longest ever hospital stay was 17 days.  Today, she doubled that record.  34 days.

It was a relatively quiet day today.  Yesterday I talked about that fine balance between controlling her pain and the fact that the pain meds tend to lower her respiratory rate a little too much.  We had to deal with that issue a little bit today.  Her Ativan dose was lowered because of this today.  For the most part, though, Peyton slept today.  She had a couple moments where she was on the uncomfortable side.  Diaper/linen changes always bring her to a new level of pain, but outside of that she seemed relatively "comfortable" today.  I'll take that.

She had her foley catheter removed today.  It had been placed earlier last week because Morphine has the side effect of urinary retention.  It's felt that with the Fentanyl patch, this may not be an issue.  We will find out soon enough.

Aside from this, everything pretty much stayed the same for today.

Tomorrow, Ron and I will celebrate 13 years of married life.  Who'd have thought it would be from a hospital room.

Hospital Life...Day 33

Today is Day 33.  If you missed yesterday's post, you can read that HERE.

For the first time in a while, there is really not a whole lot to report.  Pain control is really our number one priority right now.  We want, above all, to keep Peyton comfortable.  Since switching methods of pain control, we've had some rough patches.  One of the issues that persists is that her respiratory rate - the number of times she is breathing in a minute - has been on the low side.  She can get a dose of Morphine every three hours on top of the continuous dose administered through the Fentanyl patch.  However, Morphine can suppress the respiratory rate.  If she's already only breathing 8-10 times a minute, is it wise to give her something that could potentially cause it to be even lower?  Probably not.  That said, her pain wasn't quite controlled, so it's really a fine line to walk.

Through the night, her respirations were pretty slow.  The nurse had counted to about 20-25 between breaths at one point.  The residents came in to assess Peyton.  They decided at that point to withhold additional narcotics {the Morphine} for the rest of the night and see how she was in the morning.  They felt badly doing that because she might possibly need it for pain control.  However, as I said it's a really fine line.

This morning, the nurse had to wait until the resident came by before Peyton could get anything additional.  She was finally able to have her dose of Ativan.  She was pretty sleepy through the morning and into the afternoon, so we weren't sure what to do about the Morphine since her respirations always run lower when she is sleeping.  We held off on the Morphine and she didn't actually get any until late this afternoon.  Maybe the Fentanyl patch is finally kicking in??  I hope so!

It's been a quiet day.  I'm pretty tired.  The past couple of nights have been interrupted nights of sleep for me with doctors coming in to check on her respirations.  I attempted a nap this afternoon, but a resident was called in to take a look at her to figure out what to do about the Morphine.  We weren't sure - do we give it to her as a precaution and risk her respiration rate to go lower, or do we wait until she wakes up and risk her being in more pain than she needs to be in and having to play catch up on pain control?  We decided to wait.

Peyton rested much of today, thankfully.  I am always grateful when she is able to rest because she has spent so much of her time in pain.  Praying that tonight is a good night and that we have a similar day tomorrow.  As for her leg, no change there.

Hospital Life...Day 32

Today is Day 32.  If you missed yesterday's post, you can read that HERE.

It's April 26th.  It was on March 26th that Peyton's home nurse and I took her to the ER with what wound up being a new fracture; the femur this time.  What was supposed to be a one night stay for pain control has turned into 32 days {and counting} involving fractures, pain control, a couple blood transfusions, albumin and iron infusions, several potassium infusions, and the list goes on.  A "simple" fracture set off a chain of events in Peyton's body which have brought her into a completely new season of declining health, to the point where we haven't been sure how this is going to play out.

We weren't sure exactly how today was going to play out.  Last I had heard, there was still some uncertainty as to what the latest gallium scan showed.  We were hoping that it would show us definitively whether or not there is infection in her leg, and if so, if it was just in the soft tissue or was it deeper down, including into the bone.  There was also the thought that Peyton might need to go down for another series of scans today.  

Yesterday was so difficult for Peyton considering all the transfers from the bed, onto the table and back {a couple times over}.  She was in a lot of pain from everything she'd endured for the scans.  In addition, the doctors are really trying to get her pain controlled, and they decided that they would transition her from the continuous Morphine {with extra bolus doses every couple hours or so as needed} to a Fentanyl patch coupled with extra Morphine doses if needed.  That transition began at about 3:00pm yesterday.  At 3:00am this morning the continuous Morphine was stopped and a new regimen for the extra Morphine doses was implemented.  She is also still able to get Ativan every so often if she needs it.  

In hindsight, I think it would have been better to start the new pain regimen today as opposed to yesterday, giving her another several hours on the regimen that she seemed to be doing {sort of} ok on.  Not knowing how well her pain would be managed with this new regimen made me a bit nervous. She did have more issues with pain control today.  A plan had to be worked out to get her to a good place {at least a plan to get her into a good place...not sure she's quite there yet!}.  A contingency plan also had to be worked out for the weekend just in case this plan doesn't work out as hoped.  Hoping and praying that her pain is a little more controlled as we settle into the night and over the weekend.  Last weekend was pretty rough.  I don't want to get back to that again!

As for Peyton's leg, it does appear that it is infection, but it is not clear as to how deep it goes.  It does appear to be pretty extensive but whether the bone is involved or not is another question.  Because it is unclear, and because of Peyton's pain issues and just her comfort and what we desire for her care in general, we didn't go ahead with any other scans today.  The doctors are going ahead and treating this as if it did include a bone infection.  What this means is that she will continue on her course of antibiotics for several more weeks.  She has already been on them for two weeks.  The risk of stopping them now and assuming it's not a bone infection is not worth it if it does happen to be in the bone.

In other news...

We have been truly blessed by the generosity of so many people.  I've mentioned many of the ways in which people have blessed us over the past month.  One woman from church has been so sweet to me, coming up here several times with food and coffee and magazines.  She belongs to a group at church called Missional Moms.  They have been praying for Peyton and have been wanting to help our family in some way.  One mom had the idea of cleaning our house for us.  A group of ladies mobilized quickly to set up a date and time this week to come and do just that.  For as many ladies who wanted to actually do the cleaning, there were as many who were quick to volunteer their time to babysit all of the children of those ladies so they could do this for us.  Today was cleaning day.  I cannot tell you how grateful we are for their generosity - for their time, their willingness to do this, their elbow grease, and so on.  I am just as grateful to the moms who spent the morning at a nearby park minding the children of these ladies so that they could be in our home.  Thank you ladies from the bottom of my heart.  I know it was a huge coordinated effort to make this happen and it was so very much appreciated!!

A little later in the day, we had a couple visitors.  It was one of the nurses and one of the techs from this unit.  They were in street clothes.  They came in with a little gift for me.  They knew that today had the potential to be another challenging day with the possibility of more scans.  Fortunately that didn't happen, but we did have pain issues to contend with.  Many of the people around here are becoming familiar with this blog, but some are also finding my other blog the Fontenot Four.  If you are familiar with that blog, then you know that I receive a monthly Birchbox that I also review on the blog {I buy it myself...no one compensates me for that!!}.  Anyway, these two ladies know my love of Birchbox and decided to give me a little treat with their own version of one!  I have to say, I'm pretty impressed with their version!!  It was so sweet of them to think of me and to do this for me.  I really really appreciate their thoughtfulness.  

This evening I made it all the way down to the first floor!!  Ron spent several hours up here and we went to the cafeteria together.  Like a date almost.  A whole 10-15 minutes at most.  You have to realize that this was newsworthy because I haven't been to the first floor of this building in 32 days.  I am on the 7th floor with Peyton.  Radiology is on the 3rd floor.  When we had the family conference a few weeks ago, it was on the 8th.  Any family dinners that the volunteers put on from time to time are also on the 8th.  We got some dinner and went back up to my "home" on 7.

It's weird when I think about it.  32 days.  I haven't set foot outside in 32 days.  I haven't ridden in or driven a vehicle in 32 days.  I haven't used a hair dryer in 32 days.  I have had what I "affectionately" call "hospital hair" for 32 days.  My hair air dries funny.  "Normal" for me is more like my picture under the "About Me" tab in the top right of this blog.  I haven't cooked a meal in 32 days.  I haven't done laundry in 32 days {although I have an amazing husband who has...and I do get fresh clothes every day!}.  I don't have a huge supply of personal items here.  It is absolutely amazing how little one really needs to get by on a day to day basis.  As a side note, I don't think there has ever been a time in my 40 years where I've gone 32 days without being outside or riding in a car.  Isn't that just bizarre??'

We are heading into the weekend and we will have a new attending.  Our 7th.  However, we're back to one we've had before.  We've had Dr. M, Dr. T, Dr. S, Dr. W, Dr. B, Dr. McB {with Dr. W coming back one day this week to fill in}, and now we're going back to Dr. W for the next week.  All have been amazing.  The transition from one to the next always seems a little scary because you don't know what the know coming in and how things will go {or at least that's what you'd think}.  But truthfully, I have never felt like anyone dropped the ball on anything or that someone didn't have all the information.  It's been seamless.  That's saying something considering we're talking six different attendings in just over a month.  I am so thankful for each of them and for the perspective each has brought to this case.  I know it's a challenging case and I'm just so grateful for all they are doing for our precious girl!!

Please keep praying for Peyton, especially for her pain control.

Hospital Life...Day 31

Today is Day 31.  In you missed yesterday's post, you can read that HERE.

This morning began with some intense breakthrough pain around 7:00.  The resident was paged and he came by.  She was in between times for getting her Morphine and she was given Ativan.  He decided to see if the Ativan would help to settle her.  It seemed to help eventually.  

At 10:00, Peyton was brought back down to Nuclear Medicine for more scans like the ones she had yesterday.  It's possible with the gallium to see changes in concentration of the radioactive tracers at certain time intervals {i.e. 24, 48, 72 hours, etc.}.  Her scans yesterday were at 48 hours.  Just like yesterday, today's scans involved transferring Peyton from her bed onto the table pictured below for the scan.  If you look closely, you can see Peyton strapped in there.

The doctors wanted some different angles, so it took a bit longer than yesterday's scans.  It took even longer when, at 4 minutes remaining, the machine stopped working at a portion {if not all} had to be repeated.  Remember the earlier pain and agitation Peyton had been having?  That never really settled out 100%.  Transferring her to the table kicked her pain up a few notches.  Even with the Ativan and additional doses of Morphine, she really didn't settle.  She wasn't crying, but she wasn't totally settled.  She did as well as could be expected though.  She did have one period of breakthrough pain during the scan like she'd had earlier in the morning.  

I couldn't tell you what the below image shows by any means, but it's interesting to see:

Once the scan was complete, Peyton was transferred back onto her bed.  Once again, her pain kicked up several notches because of the transfer.  It's so hard for her to settle out when she is moved like this.  It breaks my heart.

From here, Peyton was brought down the hall to have a CT of her leg.  Care to guess what is involved??  If you guessed another couple transfers {on and off of the table for the CT}, you'd be right.  More pain.  More agitation.  It went as well as you could hope and then she had to be transferred back to her bed to come back upstairs.  One of the radiology people commented when Peyton was put down in her bed that at least she smiled for him.  I'm thinking, wait...what???  You think that gigantic grimace on her face is a smile??  Perhaps when it was followed by a scream, that cleared it up for him.  I haven't seen a smile from her in probably a week despite my best efforts, so I'm pretty sure she wasn't going to smile in that situation.

All of that took about 3 hours.  We got back up to Peyton's room around 1:00pm.

I don't know what the final word is on the scans from today, but what I do know right now is that nothing that was done today shed any additional light on the situation.  We're just as unsure right now about her leg as we were before going down.  I had really hoped that all the trauma of transporting her and transferring her four times today {plus everything from yesterday} would result in some answers. I am told that they may want to do more imaging tomorrow.  As I said earlier, they will sometimes do gallium scans at various intervals.  Tomorrow would be another interval.  The question is - is it going to be worth putting Peyton through the necessary transport and transfers in order to do this??  I don't know that she will have more scans tomorrow.  I don't even know if what I heard earlier was the final word on today's scans.  But this is what I know as I write this right now.

That picture was taken last night.  She's been too agitated and unhappy today.  Not that she looks happy in this one.  And if you are from Houston, yes that is the giraffe that is the mascot from Memorial Hermann Children's Hospital.  She got that giraffe when she was 2 weeks old when she had her 2nd surgery there back in May 2006.

Hospital Life...Day 30

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

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

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

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

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

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

In other news...

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

Peyton received some more beautiful flowers yesterday!

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

Hospital Life...Day 29

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

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

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

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

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

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

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

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

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

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

As always, your prayers are appreciated!

Hospital Life...Day 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 27

Today is Day 27.  If you missed yesterday's post, you can read it HERE.

We continue to battle with Peyton's pain.  I just feel so helpless when I see and hear her in so much pain.  The Morphine dose that is given continuously has gone up, but it keeps needing to go up.  She is also still requiring additional doses for breakthrough pin.  Last night they began a new regimen where they would give her three doses of Morphine, 10 minutes apart and then keep the continuous Morphine going.  The theory is that would get her to a higher level and hopefully sustain her  longer.  In theory, that should have lasted 8 hours.  It did not.  She was given an additional dose in the early morning hours.  At 7:00 this morning they were able to repeat the 3 bolus regimen.  That should have held her til 3:00pm but she needed an additional dose about an hour or so ago.  She is not crying out just now, but she's very fidgety.  She can't get comfortable.  She looks so tired and wants to sleep, but can't get there.

The team had one of the PICU doctors come have a look at Peyton.  He actually just left.  He actually did a procedure on Peyton over a year ago to drain a couple abscesses that she had.  They consulted with him to see if he might have any additional thoughts on what we could do to manage Peyton's pain.  Above all else right now, we need {and want} to keep her comfortable.  She is not.  He agreed with the current plan with the Morphine, but I think that he may be discussing with the people here about increasing the rate.  He also discussed the possibility of administering something like Valium or Ativan or something in that family to help settle her.  Failing that, he has another idea in his back pocket if she maxes out on the narcotics.  We will see if we get to needing that.

Peyton's heart rate has been increased between last night and now.  It's been in the 140s-160s.  When agitated, I've seen it jump even higher.  Diaper changes and any sort of movement is so incredibly painful.  I can't stand crying in front of people, but I just can't help it now.  To watch your child suffer like this is just more than I can bear sometimes.  I try to be strong for her, but there are times when I just have to walk to the bathroom or just sit down for a moment.  I just keep praying for relief for her pain.  That relief seems very difficult to find.  She's had some, but eventually the pain just intensifies and we're right back to the pain and suffering.

In the outside world, Ron's mom is visiting.  She bumped up her visit so she could come lend a hand with Moira.  Moira, of course, is loving it.  They are pretty close, so I am very happy that they are going to get to spend some good quality time together.  When I heard where they went for brunch after church today, I told Ron they needed to hook me up, so I expect to see them in a little while!

I'll keep you posted on how Peyton's pain is doing.  Hopefully I have a better report next time.

Hospital Life...Day 26

Today is Day 26.  If you missed yesterday's post, you can read it HERE.

Today has pretty much been a continuation of yesterday in terms of pain management.  The level of Peyton's continuous dose of Morphine has been increased a couple of times.  She has needed frequent "rescue doses" today.  That means that she needed frequent bolus doses for intermittent breakthrough pain.  The pain is still pretty intense when she has the breakthrough pain.

Peyton needed to be weighed today.  Not sure why, but the weights they've been getting are not always consistent despite the bed being zeroed out prior to weighing her.  Today's weight was up from yesterday's.  In the process of zeroing out the bed, Peyton had to be lifted up off the bed and held while the zeroing out process took place.  Just one push of a button and the bed zeros the weight of the bed.  However, the wait seemed to take forever today.  It wound up being three people holding Peyton while this happened.  In the process of lifting and holding her, she screamed so much and was in so much pain that she began breath-holding.  Her face started turning bluish purple and her oxygen saturation dropped into the mid 60% range.  Then she'd scream but she wasn't taking good breaths.  When we finally were able to set her down, it took a while for her to calm down sufficiently to get her color back and her oxygen saturation back up.  It is heartbreaking to see her in that much pain.

We have a new attending for the weekend.  Peyton has seen him perhaps two or three times on previous hospitalizations.  In fact, I want to say the only times we've had him were on days she was being discharged, so we don't have a whole lot of experience with him.  As it turns out, he seems to be yet another wonderful addition to the team.  Ron happened to be here when they rounded today.  He and I were both very impressed with this doctor.  He seemed to us to be both interested and concerned for Peyton, as well as sorry that she is experiencing all these challenges. 

As for Peyton's leg, I honestly think it is now worse.  It may not be as red, but the coloring of the area has changed.  The redness has crept up the top of her leg a little bit.  Her lower leg and foot seem puffy today.  No fevers and her white count wasn't high, but the doctor wanted to discuss things with Infectious Disease to see if we needed to add on another antibiotic.  Right now, it isn't looking like we will.  Ron and I are quite concerned about her leg.  And her pain. 

I just wish I could take her pain on myself so she wouldn't have to be the one suffering.  It is heartbreaking.  Thank you for all your comments, emails, calls, etc.  We truly appreciate your love and concern for Peyton.