Wednesday, April 17, 2013

Hospital Life...Day 23

Today is Day 23.  In case you missed yesterday's update, you can read it HERE.

Today started out with the delivery of this to my room, so Wednesday and I got off on the right foot!

Peyton's leg really is not getting any better.  In fact, I thought it may have even looked a little more red today.  If not more red, it definitely looked more swollen to me.  It is also still very warm to the touch.  There is a high level of concern for Peyton's leg.  The doctors are treating her with antibiotics for a possible infection.  The question is - where is the infection: tissue or in the bone?  There is a huge difference in the course of treatment, so this morning it was felt that we really need to get an MRI.  The problem is that Peyton would have to be sedated and she is not a good candidate for sedation right now.  The question became how would we do this without causing her harm.  Do we attempt to do it without sedation?  If we went that route, there's the possibility she wouldn't be still, so she'd be unnecessarily exposed to radiation with poor image results.  Ultimately it was decided that an MRI was not the best approach.

Instead of an MRI, we have opted to have a type of bone scan done.  They will inject tracers into her and they will go to where the infection is.  The problem right now is that the femur fracture itself will attract these tracers because of the cells surrounding it to try to heal it.  The injection needs to be done a day ahead of the scan, so either we inject Thursday and scan on Friday or inject Sunday and scan on Monday.  The doctors want the radiologist reading the report to be one who is very familiar with what is going on, hence the delay over the weekend.  We could scan on Friday, but nuclear medicine has said that there's about an 80% chance that they will be able to tell where the infection is.  If we wait until Monday, it is possible for that number to improve.  We have opted for Monday.  Infectious Disease and the Gen Peds team agree with this decision.

Here's the thing.  First of all, we aren't even 100% certain this is an infection.  So if it's not, then what is it??  Second, if it is an infection, where is it and how is it responding to the antibiotics that were already started to treat it.  There's no concern over whether or not the type of antibiotic is right or not.  It is the right one to be on regardless of what type of infection it is - a cellulitis or an osteomyelitis.

We are waiting until Monday to scan.  The big "what if" is what if Peyton's leg gets worse over the weekend.  If it gets worse by tomorrow morning, we can bump up the scan possibly.  But if it's over the weekend, what do we do?  The answer is probably not much.  She's on the right antibiotics, so it's not like changing them will help.  Looking ahead and just thinking of the "what ifs", there's the potential for surgery.  I am not saying she needs surgery.  Right now she doesn't.  But suppose she did.  Peyton is not a good candidate at all for a surgical procedure of any kind.  I won't get into all of that, but suffice it to say, we need for the antibiotics to work and for this infection to get better.  And if it's not an infection, whatever it is needs to clear up now!

Aside from the leg, pain management is huge for Peyton right now.  There was a huge discussion this morning about pain management.  Rather than have her on Morphine scheduled every few hours, she is now on a morphine pump with a lower dose which is given continuously.  She is also getting Toradol as of today.  She'll get up to 6 doses.  It has some anti-inflammatory properties, so hopefully that will help alleviate some of her inflammation in her leg to make for a better-read bone scan on Monday.  Pain management is huge.  Peyton's pain is huge.  It is so sad to see her in as much pain as she has been in.

Ron came up today to spend some time with us.  Before he arrived, I was texting him an update.  People keep telling me I can turn autocorrect off.  However, these days it's a pretty cheap form of entertainment.  I keep it on.  I almost always catch any mistakes and correct them before they go through as a message.  Today, however, one slipped past me and I honestly did not even catch it until it was gone.  I always wonder how people don't realize they've sent what they've sent but I get it.  Just being too quick to check, this is a portion of my message to Ron this afternoon.  Maybe it's not as funny as I apparently think it is, but it provided a much-needed laugh this afternoon.

So...yes, a Morphine pump was set up.  That's quite the contraption.  Another syringe pump added to Peyton's IV pole.  I did not realize that the Morphine was kept under lock and key at the bedside!  I promise, you can trust me!!  On this set up, left to right, we have her lipids, TPN, Morphine, and other meds set up to run through her line.  She has a port but it all still eventually goes into one single line into her chest.

No one is getting away with the Morphine around here!

The addition of the Toradol required additional equipment.  The current set up is now officially the biggest IV set up Peyton has ever had.  It's not just a matter of having a pump for each item.  Some meds are not compatible with the TPN so how it is set up is extremely important.

I am grateful today for lunch brought in for me by a dear friend.  I may not have had an "exciting" "different" sandwich {it was chicken salad}, but it was from someplace I've never heard of much less tried.  It was absolutely delicious and I'll have to try that place out one day when we're out of here!  I appreciated the lunch, dessert and especially the company.

Dinner this evening was another family dinner provided by a volunteer group.  It was actually put on by Wendy's.  You went in to the room, grabbed a "to go" bag which had a plate, napkins and cutlery in it.  Then you went over to a table where they were serving up Wendy's chili.  There were baked potatoes but the line up was huge tonight and we missed out on those.  Then you went to the next area where you could get a chicken sandwich or a hamburger.  I got a burger and was even asked if one was going to be enough {this is after already having picked up a bowl of chili}.  Indeed one was enough.  Then you went to a final table where they fixed up your sandwich with lettuce, tomatoes, pickles, etc.  These family meals are often meals made by a church group or another organization {last night it was pharm students}.  It's not every night.  It's random.  But when they happen, they are so appreciated.  They are provided free of charge for the families of children in the hospital.  What a blessing.  It was one less thing to worry about today.

This afternoon, Peyton was moved to a new bed.  Same room.  Just a different bed.  She is starting to have some skin breakdown on her backside.  One of the residents {I believe} made the suggestion to move her from her regular hospital bed to one with an air mattress.  So, that is what was done.  It will sense pressure points and help to provide more support and comfort for Peyton and hopefully help to avoid further breakdown.  The transfer from one bed to another, having two beds in this room {thankfully it's that huge room we were moved to a while back!}, and removing one bed was interesting to watch, but the three nurses who did it handled it very well!

Ron and Moira came back this evening and I spent some time with Moira in the play room.  It was good to spend that time one on one with her.  That room is on the same floor as the unit Peyton is in, so I could leave the unit but still be nearby just in case.  We certainly hadn't banked on a 23+ day hospital stay way back on March 26th so we're trying to do what we can to make this work.  We've talked to the child life specialist here and despite how I am feeling torn about being here and not at home, I am assured that my feelings are normal for what we are dealing with and how we are handling the situation is good.  You do the best with what you can in the situation you've been given.  That's all you can do.

Thank you again for your continued prayers and support.  It means so much.  Please continue to pray and ask others for prayer for our sweet girl.

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