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 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!