A bit of documantation for posterity.

Hello webosphere.  The last few days have been rather soul tiring.  Gregory has been super cranky and irritable.  At this current time is does not have a fever and has not had one for about four hours.  He hit 40.1 C (104.1 F) earlier today with heart rates in the 190 to 200 range.   I can only imagine how sick and tired he is of being sick-and-tired.  His breathing has also become rather shallow.  His counts for the last two days have been about the same.

Yesterday he received Platelets, Lasix and Red Cells.  Today he received Platelets.  They have pretty much ruled out VOD, except he is retaining fluids.  The threshhold for platelets and Red cells have both been moved to 30.  I guess it’s easier on the body to have a good amount of red cells for both fever and fluid retention.  He is retaining fluids today, but no Lasix.  They would like him to have some fluids, in case he gets feverish again.  I did manage to get a few doses of Tylenol in him and I think it made him feel better.  If nothing else, it help his body.  His system has been working triple, time and 1/2.  He has been needy, overstimulated, cranky, irritable, loving, withdrawn.  He also has been talking in his sleep.  A lot.  I guess it’s from the Morpine.  I was told that it can cause some pretty vivid dreams.  

Weekends kinda through me off, around here.  The schedule is a little more fluid and it really does feel like a weekend.  I’ve met some amazing people, while here.  From fellow patients to providers to nursing staff to ancillary staff.  As it is with most things, Gregory and I are THE team on the floor.  Everyone loves to work with us and we love ’em back. 

I took an idea from my friend Tana and modified it.  We have a large piece of butcher paper on our wall.  I have asked that folks give us book recommendations.  One for me and one for Gregory.  If any of you would like to virtually participate, leave a comment here and I will transfer it to the butcher paper.  Pictures to follow, of course.  Tana you will love this, one of my favorite nurses recommended Expecting Adam.  (I’m pretty sure I told you that already, but I wanted to get it down here, for posterity.)  We’ve had some great suggestions and they are also so very diverse.  I love diverstiy.

Well.  It’s now 12:08am and Gregory spiked.  38.6C (101.5F).  Which means blood cultures, now.  When Fiona (love that name!!) went in his line to get blood, the red side is not drawing.  Our first experience with line problems.  We get to try some TPA in the line for a few hours, they draw it out and then they should be able to access that side.  We really need to access that side for Monday’s labs.  Since Gregory has been febrile for so long, they are changing his anit-fungal, too.  He is currently on Fluconazole.  They are changing it to Voriconazole.   The caveat to this is that Voriconazole likes to double the Tacrolimus levels.  Which is not a good thing.  So they need to check his Tacro levels, adjust it by half and then administer the new Anti-Fungal.  The blood must be drawn from the red side, due to the fact that the Tacro is administered through the white side. 

I probably lost a few of you there.  Let me digress for a moment.  Some of you missed my Hickman description.  Gregory has a double lumen Hickman Central line.  (BTW- It’s now 12:25am and his temp is 39.4C {102.9F})  What I never realized is that the red side is slightly larger than the white side.  Two lumens allow for a larger volume of “stuff” to be infused at the same time.  It also means that scheduling meds is easier.  Some of Gregory’s meds cannot be infused at the same time as another med, through the same lumen.  He has two lumens and eight places for “stuff” to be infused.  There are four things alone, that are infused 24 hours/day.  They are:  TPN, which is two items.  Viamins/minerals and lipids.  Tacrolimus.  Morphine.  Which leaves the folowing to be infused along side ot them:  Acyclovir, Fluconazole, Zofran, Atavan, Meropenem, Platelets, Red Cells, Lasix, Normal Saline or 5% Dextrose (this is infused along with his meds.  It’s used as a buffer.  He is currently on 5% Dextrose.  They changed it in order to limit his sodium intake due to fluid retention.)  These are the meds he receives regularly.  There are also others that he has received short term.  Dilantin was one.  I can’t remember if there have been others.  Are you still with me?  I’m impressed.  I’ve been meaning to log his meds, for posterity.

He has been breathing fairly shallowly.  While his oxygen saturation is OK, it still concerns me.  It’s normal and part of all this.  So.  I have been encouraging him to blow bubbles, as often as he feels like it.  He takes gigantic breaths and blows super hard.  Exactly the kind of activity he needs to keep his lungs functioning.  There is a good chance of fluid retention in his lungs, too.  Can you say pneumonia?  We want to avoid THAT. 

I hope everyone enjoyed their Solstice!!  Gregory spent his Solstice riding nakey on his Tricycle back from a tub at 11:00 at night.  Rather fitting, if you ask me.

He receives his last dose of Methotrexate, tomorrow.  Which means more mucositis and I’m sure more of just feeling yucky.  Of note:  this may be TMI, but I need to log it.  His hiney is all of a sudden super red and painful.  I will be seeking additional help.  We are currently applying two ointments to prevent, but now we have more and I think he needs something else.  Also?  Since he started TPN his stools almost smell like stools from a Breast Fed baby.  Strange.  Makes complete sense to me, though.

Siblings arrive tomorrow.  I’m more anxious than excited.  The more people that Gregory is exposed to, the higher his risk of infection is.  While I can police them, it’s easier to police adult visitors.  Of which I will be receiving one tomorrow!!!  Can’t wait to see you, Deanna G.

**A very special Thank You to Mrs Bowman’s classroom.  Thanks to everyone who sent Get Well and Be Strong wishes to Gregory.  I’ll post pictures, soon.  I just have not taken the time, yet.  Also, thank you to each and everyone of you who have helped Curtis & AnnMarie to get through this really strange time in their lives.  From classmates to teachers to school staff to parents.  Thank you, too, to parents who have sent me endearing stories about encounters with my older OffSpring.  The emails have been duly saved and I will probably post them in an entry, just so they are all together.  Also thank you to AnnMarie’s class for blessing Gregory every single day.  Even reminding Paula that you all still needed to do it.  Thank you for blessing him during Camp Out.  Thank you to Laruen & Sydney Meany’s classroom for the blessing book.  Every single moment that you spend thinking about Gregory counts and it makes a diference.  While he is still pretty sick, he is using all of the strength that you are sending and working super hard to be well.  He’s been a rock star, so far.  Keep it coming.  He still has quite a bit of work to do.   

This entry is a little nutty.  A little of this, alot of that.    I’ll see you all tomorrow.  Day 11.  There is a chance that we could start to see counts by this weekend.  *crosses fingers*  ’til later, gotta jet.


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in days 1-10, febrile, fluconazole, meropenem, tpa, vod, voriconazole. Bookmark the permalink.

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