Monday, April 22, 2013

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!

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