Central Line Infection!!!!!!!!!!!!!!!!!!

I could sit here and tell you how everything is going good, nothing to worry about, it's all to be expected, another part of "the experience".........

Which would not be false.  It wouldn't be the whole story.  My perceptions are so not normal.  I've watched Gregory go through the sickest sick you could ever imagine.  I need to ctrl-alt-delete my "is my kid sick" meter.  He is alot sicker than I gave him credit for.  I really thought that Monday we would come in for some IV Fluids and go back home.  So not the case.  He's pretty darn sick.  

This morning's counts:  Hematocrit ~ 33, Platelets ~ 56, ANC ~ 1275, Weight ~ 13.9

His cultures that were taken yesterday at 4:00pm still showed positive for Enterococcus.  Which is the E in VRE. Vancomycin-Resistant Enterococcus.  It did not mean that he has VRE, it just freaked me out.  The sensitivities came back tonight and he DOES  NOT  have VRE.  Whew!  Dodged a bullet on that one.  I should probably state the obvious.  Gregory has a line infection.  *crap*  Which means the infection came from his central line.  Basically a dirty access.  The infection entered through a not clean enough access of his central line.  Which, quite frankly, can happen at anytime.  I've already run the gauntlet of blaming myself.  While I have been accessing his line daily (except for when we are in the hospital), since the first of March.  Except I've been hooking IV fluids up since Sunday the 2nd of August.  It's an automatic default for me to question if the infection came from ME not being clean enough in my accessing him.  *shrug*  There really is no way to know where it came from.  It just means that I am going to be hypervigilant, from this point forward.  

They did a Vanco level (where they draw a blood sample to determine if his dose of Vanco is at a theraputic level.)   It was LOW.  They tripled the dose and I am hoping that this increased dose will clear the infection.  If the infection does not clear soon, don't know what the exact time line on this is, then we start to discuss removing his Central Line.  The bacteria can get stuck to the walls of his central line, which means we cannot get rid of it.  I really, really, really, really, really hope this does not happen.  It would mean placement of another line and he already has had two sperate lines placed.  With the second placement not being a very smooth surgery.  I am also afraid that they won't place another line and go with a PIC line.  *shudder*  He is too young to have to deal with  a PIC line and/or repeated needle sticks.  Thanks, but no thanks.  We will deal with this when we get there, but I am trying to prepare myself to advocate for a new line placement.  

Today was rough.  Gregory had his first headache.  So bad that he was clutching his head, saying "ow" and crying.  It would come in waves.  He would be OK for a few minutes and then have an attack of pain.  He is also having escating gut pain.  His Bk Virus is also flaring.  His temp is great, though.  Another thing to note, his blood pressures have been low.  Not too low, just significanltly lower than his normal.  Same with his heartrate.  His heart rate is usually around 120-130 and it has been around 85-90.  He has also been really clammy to the touch.  The antibiotics are really doing a number on the bacteria and they are releasing all kinds of toxins in his system and he is stuggling to keep up.  We gave him a dose of Oxycodone at 3:00 and he has been asleep ever since.  With occasional verbal outbursters in his sleep.  I'm hoping that he snoozes until morning.  He really needs to get a solid nights sleep.  

Not that I did not know he was fragile, but this has been a real wake up call in terms of how fragile he really is.  How careful we REALLY need to be.  There is absolutely no room to screw this up.  My heart is telling me to lock him up in a plastic bubble for the next year and completely shut us off from the outside world.  In reality it is not possible, except I am going to try my damnedest to make it happen.  This new reality that we are living in is so isolating.  Isolating from the world of "my kid doesn't have cancer".  'Cause you really can't understand or get it, until you live it.  I used to be the type of person who would see garbage, stuff in general, on the floor/ground and happily put it in the garbage or put it away.  I don't touch walls, railings, counter tops, door handles, pretty much anything without the thought of "where's the nearest sink and/or anti-bacterial gel".  I don't buy any food anymore that is not individually wrapped.  For Gregory or myself.  If I hear someone cough/sneeze I visibly flinch and search for the location.  It's a weird, weird world.  

In fact, they tested his immunoglobulin  G (IgG) levels and they are low.  Low enough that they will be giving him IV IgG.  I'm not well versed in what this is or how it is administered.  More on that later.  

Well, it's about time for midnight vitals and I need to comfort Gregory through them.  I  have a bunch more "stuff" floating around that I would like to get down.  Maybe tomorrow.  I will see how it all goes.  'til later, gotta jet.

Gram-Positive, Gram-Negative, Ceftaz, Gent, Vanco................

The world of Childhood Cancer, Chemo,CBC's W/Diff,  ANC's, Bone Marrow Transplants:  Wait five minutes and it will look completely different.  

We have been admitted, as of last night, for at least a two week stay.  Why?  I'll get there.  Let's recount the last few days.

It's been very busy, the last several days.  Today is Tuesday, mom got here last Wednesday.  Thursday clinic.  Dad got here on Friday, fixed my car.  Picked my brother Travis up Friday evening.  Visit from an awesome family of five (*waves madly to the Meany's*).  All weekend he was cranky, obstinate, just not right.  His BK Virus has been bothering him, painful urination.  I would give him a little Oxycodone and his temperament would totally change for the better.  The extra activity and people around also affected him.  In hindsight, it really was too much.  Can't regret it or change it.  Just remember that he really needs peace and quiet.  

Monday he popped a temp of 100.00 at 6:00am.  I called the on-call number at SCCA, Seattle Children's, spoke with the PA Natalie.  She recommended that we take his temp again in 15 minutes and if it was continuing to climb, we would be coming in.  Since we had clinic that morning, it was a little easier to be hesitant.  His temp did drop a little and we proceeded with our morning and headed out to clinic at 7:30am.  Well.  We climb into my car and it is dead.  Again.*  No time to worry about the cause, at that moment.  We load up in mom's car and head out.  Gregory was due for his weekly "I'm on Prednisone, so I get weekly blood cultures."  Labs were drawn and we headed upstairs to wait for our 10:00am appointment.  Gregory did nothing but lay in my lap, on the floor, and sleep.  Oh yeah.  Remember his counts had platued and were starting to decline?  Yesterday morning's ANC was 2790.  Weight? 14K.  His Platelets took a hit: 89.  His Hematocrit was down, too.  27.  Good news on that front.  We got through the appointment and headed home.  Gregory was punky, tired and just out of it all afternoon.  He started to feel warm, early evening and popped a temp of 100.3.  Requisite phone call was made and we headed into SCCA at Seattle Children's for what we hoped would be fluids and then home.  When we got here he was at 38.9C (102F).  Which is an automatic 48 hour stay.  As with all admits, it got crazy.  Plenty of labs, repeat cultures.  This time from both lumens.  Antibiotics were started, tylenol.  His blood pressure was really low and he was started on a BIG fluid bolus.  The idea is that he is dehydrated from being feverish, which causes low blood pressure.  Also, as it turns out, his non-functioning white cells were madly trying to fight off a nasty bacterial infection.  His blood pressure continued to be low.  Managing low blood pressure is a delicate dance.  There are very specific guide lines and protocol.  The antibiotics also contribute to low blood pressure.  One of the antibiotics, Gentamicin, is for combating Gram-Negative bacteria.  This bacteria, when treated, releases toxins into the blood stream, contributing to lowering the blood pressure.  Careful monitoring of his blood pressure, during adminstration of the drug, is crucial.  His hematocrit was low, too.  Another contibutor to low pressure.  He was allowed three fluid bolus and a red cell transfusion.  If his pressure was not able to recover, it was straight to the ICU.  Not because he was dangerously low, simply because they are better equipped to manage low pressure and have the tools available to get aggressive.  Gregory received his three bolus' and his red cells and as of NOW, his pressure is stable and holding.  Before his blood arrived, it was confirmed that he does have a Gram-Positive Bacteria, which in my limitied understanding, Staph is a memeber of this family.  The positive culture came from his cultures taken at SCCA that moring.  Having a result that quick tells me that he has a pretty hefty amount of it, too.  Therefore he was started on Vancomycin, which is for Gram-Positive Bacteria.  Which means at least a two week hospital stay.  They also started a round of Ceftaz.  Another antibiotic.  Keeping up?  So.  Aside from his daily, routing Dapsone, he is now on three additional antibiotics.  Vanco, Gent and Ceftaz.  

He is pretty sick.  Spiking fevers and sleeping.  We are keeping him well hydrated, especially with the BK virus still active and his blood pressure.  We of course, are not in a BMT room.  There are not that many and the need is great.  At last check, Seattle Children's has 30% of the hospital occupied by SCCA patients.  That means 30% of the hospitals patients are Hematology/Oncology patients.  Since Gregory is a BMT patient, we will not get shuffled off to another floor.  We will always remain on this floor and will always have a private room.  (yeah, Spokanites!!  They have rooms here that hold up to five patients!  Crazy!!!!)  There is a pretty spectaular bright spot, though.  Our room is awesomeness.  Since Gregory has not been using the bathroom, he is exclusively using his diapers, I can use the bathroom in his room.  Also?  WE HAVE A SHOWER!!!!!!!!!  Sweetness!  The layout of this room is pretty nice, too.  Not near as many windows, but it's a pretty decent room.  

When I brought Gregory over last night, Travis tagged along.  He received a crash course.  I think his head was spinning a bit.  I'm glad that he got to experience it, though.  It helps to take some of the mystery out of it all.  Yet, I can imagine it also added a little confusion, too.  

For the record:
Monday evening counts:  Hematocrit ~ 28, Platelets ~ 79, ANC ~ 3496
Tuesday AM Counts:  Hematocrit ~ 24, Platelets ~ 55, ANC ~ 1275

We rounded a little bit ago and I received some further news.  We have to stay 10-14 days BEYOND a NEGATIVE blood culture.  Ugh!  Really?  So.  I have no idea how long we will be here.  

We are settling in and in a strange way, re-connecting.  We need to find our groove, again.  Even though it sucks to be in-patient, it's also kinda nice to not be "on".  I still keep an eagle eye on stuff, but it's not all on me.  

Gregory would like to use the laptop now.  It's time for me to close.  Until later, gotta jet.


*ETA:  Late last week I plugged in the portable DVD player into the cigarette lighter in the car.  The power was left on, on the unit.  Shouldn't be a big deal, right?  Well, the AAA guy showed up to tow it to the dealer and he went to jump it, in order to move it into a better position for hooking up to his rig.  He used to work for a car stereo installation place.  He is the one who figured out that there was a device draining the power.  That being said, it shouldn't be happening.  There is an issue with grounding.  No big deal, though.  I will just need to remember to unplug every auxillary item, before walking away from the car.  It's fixed for now.  That is what matters.  Well, not really.  Gregory is what  matters, the rest is just stuff......

Counts are dipping. Day +57 post BMT.

What a weird couple of days.  Yesterday was a fantastic day for Gregory.  Filled with laughter, play and just a good day.  No throwing up!!  I think I've got the puking under control.  I was giving him his Zofran (anti-nausea) WITH his other meds.  I started to dose him twice a day, only with the heaviest quantity of meds, 30 minutes prior to meds.  It's worked for the last couple of days.  He is continuing to have really nasty gas (so nasty) and stomach cramps.  I don't think it is related to what he is eating.  The things he is eating are pretty simple.  Who knows.  He has his last dose of Methadone today.  He is no longer on any pain meds.  Amazing.  Why?  He DEFINATELY still has the BK virus.  Yet his symptoms are so small.  He is continuing to complain of itching, but only in the evening/night/early morning.  Tonight, though, he had what he called a "bad pee".  It stopped him in his tracks, but he did not complain of pain.  Upon changing his diaper, it was the color of red koolaid (thank for the description, Chuck!).  I cannot believe that he is not experiencing large amounts of pain.  Especially consider the amount of pain he was in when this all started, 29 days ago.  
His nG feeds have been cut back to 12 hours, instead of the 16 that he was on.  He needs to eat about 400 calories a day in order to keep this schedule.  I'm not sure if he will be able to do this every day, but it is looking good so far.  He is still on a 10 hour IV hydration.  We had discussed staying on it for the next week.  After tonights diaper, we need to stay on it for a while longer.  In my opinion.  
Counts.  This is where I get hesitant and start to wonder.  His counts stalled for a while.  This last week they have taken a dip.  We are at day +57.  I don't know what they SHOULD be, 'cause "should be" doesn't apply in this realm.  It could be normal, it could not be.  I did not press the issue with the team.  Not yet.  If his ANC drops below 1000, then I will get worried.  They have made it to 2200.  Thursday's ANC was 1340.  His hematocrit dropped and he was transfused on Sunday.  His platelets are dropping, too.  Add to that the blood in his urine and I don't know, really, what to think.  Nothing is conclusive.  When we were still in-patient Dr Andrews talked about doing another Chimerism study around day 60.  When I mentioned it to the team at SCCA, they stated that a chimerism study at day 60 is not done.  Unless there is a reason to question it.  (The Chimerism study looks at peripheral blood cells {from a blood draw} and determines how many cells are donor and how many are not.) Of course, while at the appointment I did not question any of this.  I have a habit of needing time to chew on stuff before I ask questions and get pro-active.  It's not that I'm not quick on my feet.  I just need to think about what was said, mull over results, make sure I understand what is going on and then fill in the blanks.  Trust me, Monday I will have a whole lot of questions.  Especially if his counts continue to drop.  He started the different anti-biotic on Thursday.  He discontinued Bactrim and started Dapsone.  Apparently Bactim can suppress counts.  Yet, we discontinued it on Monday and his counts continued to dip on Thursday.  Was this enough time for his counts to recover from a Bactim induced dip?  I dont' know.  It's not a question I was prepared to ask on Thursday.  We have had so much going on that my mind has not been as focused on his counts as I was when we were inpatient.  (Tell me, how to you represent these words?  In-patient?  Inpatient?  Out-patient?  Outpatient?  Either way it looks weird.)  

Here's how the last week has gone down:
Monday!  First day out-patient.  Clinic at 8:45.  Really rough day for Gregory.
Tuesday:  Tried to get organized at the apartment.  Ugh!  Mainly laid around all day.  Man I was exhausted.
Wednesday:  Prepared for Mom's arrival, later that evening.  Managed to get some of the apartment organized.
Thursday:  MY CAR QUIT WORKING!  (See below)  Clinic at 8:30.  Gregory had a great day.  Thankfully mom was here and we also did a grocery trip.  Gregory got to pick out some goodies.  Picked up prescripton from Seattle Children's pharmacy.
Friday:  Dad arrived in the AM, he worked on and fixed my car.  My brother Travis arrived from London.

Along with all this, we have been finding our groove with his meds, trying to ease him into eating, dealing with nG feeds, diaper changes, IV fluids and just learning how to live out-patient.  It's alot.

Thursday, me, Gregory and mom went to leave for clinic.  I went to unlock the doors with the remote and...... nothing.  I thought that maybe the alarm was just acting wonky.  I do not know how to turn it off, once it is activated, without the remote.  Dad does.  I figured the alarm was just acting weird, dad would turn it off and we would be OK.  Thankfully mom was here and had her car, so we trucked off to Clinic and errands with her car.  Dad came down today only to find that it was not simply the alarm.  There is a wiring problem and the car likes to eat batteries.  Dad put a new one in and we are good to go.  The last battery was replace three years ago.  At least I feel comfortable knowing that this one should last at least until we get home.  Car troubles do not get me down as much as they once did.  Honestly.  There is always a solution and there are always other options of getting where you need to go.  Going through this with Gregory has really taught me not to sweat the small stuff.  While car issued used to be catagorized as "big stuff", it really is small potatoes.  Yeah, it can delay stuff, but it's OK.  I need to remember these words, when the car has issues and we are two years past successful transplant. 

Anyhow.  The gist is that we are busy, trying to settle in, have lots of company and his counts are dropping.  I don't know what to think about the counts thing and only time will be the answer.  It's completly out of my hands and no amount of worry is going to change it.  (OK.  Gregory is "cutting the cheese" like CRAZY!  Holy cow the kid stinks!)  The best part is that Gregory's spirits have been great.  While his energy level varies from moment to moment, it's still really good.  Mom picked up a helmet for him and yesterday we spent a few minutes with him riding his tricycle on the basketball course, in the "park" next door.  He loved it.  The weather has also been considerably cooler.  Yay!

Once again, another really disjointed entry.  Which in a way is very telling.  This "planner" is taking a crash course in moment-to-moment.  Thankfully the feeling of moment-to-moment is finding a home within my head and all is well.  Had I learned to live a little moment-to-moment earlier, I would have had more moments that were pleasant to remember.  It's time to quit slamming the keys (which is just how I type, not related to my mood) and get Gregory to some shut-eye.  He took quite a nap today and is still up.  'til later, gotta jet.

There is never enough time for reading.

We are sitting in a freshly scrubbed, somewhat organized home.  The apartment at Ronnie Donnie has nothing but hardwood floors.  Which is totally awesome, but not to great for chillin' on the floor.  We could leave the sofa bed out, but I am trying to get Gregory out of the habit of playing in bed.  Mom found a really great floor mat and it arrived today!!!  Pretty cool, huh?

I started a project, while we were in-patient.  We, for obvious reasons, did not have a ton a friends/family stopping by to see us.  A friend had a hospital experience where she posted butcher paper on the walls and had everyone write "lessons" that they learned through her husbands hospitalization.  (T ~ OK description?)  Instead of lessons, I requested that the staff give Gregory and I their favorite books.  Their favorite all time book and their favorite childhood book.  Here's a pic of it, you really can't read it, but there are GREAT recommendations on it.  I've already plowed through a few of them.

Two very lovely nurses (Daytime Sarah and Evening Amy) suggested The Curious Incident of The Dog In The Night Time by Mark Haddon.  (Man, I need to start paying royalties to Wiki.)  It is a story, told from the perspective of a teenage Autistic boy.  I really enjoyed it.  Mostly because I get it.  While Curtis is not Autistic, many of the characthers idiosyncrasies are intimately familiar.  Less drastic, yes, but still familiar.  I'd be curious (ha!) to see what people who do not have experience with Autism/Asperger's think of the book.  Any takers???

This experience has granted me the chance to do some intense "pleasure" reading.  Prior to Gregory's dianosis, I was on the "information" war path.  Political, environmental, behavioral, spiritual, developmental.  I couldn't cram enough information into my head.  It's so nice to read for fun, not personal/familial development.  While I still enjoy reading those types of books, hopefully I won't be as obsessive/complusive about it, in the future.  Next up?  Breakfast With Buddha by Roland Merullo.  Another book recommended by Amy and on loan, as well.  Thanks, girlie!  

*sniff*  I smell stinky drawers.  Time to take care of THAT.  'til later, gotta jet!

Finally, time to post in peace.

There is something to be said for doing nothing.  Well, at least not leaving the "house".  We veged today and settled in.  I still have a ton of organizing and unpacking yet to do, but it's all good.  One thing that I keep putting off, is prepping an emergency overnight bag.  This Odyssey is pocked with sudden trips to the doctor or ER that result in mandatory hospital stays.  Gotta do that tomorrow!

His nG feeds and IV fluids are going really well.  He managed not to heave today, except around 5:30 he started to get stomach cramps which resulted in immediate sleep, again.  He's been sacked out since 6:00.  Since we discontinued his pyridium and oxybutinin, his itching as stopped.  Hmmmmmm.  He doesn't seem to be in bladder/urinary pain, either.  Except he is still passing a few clots.  Strange.  Since the medications for this have stopped, his 10:00, 4:00am & 6:00am doses don't need to happen.  Many thankful z's for THAT. 

Mom will be here tomorrow and my brother Travis is arriving from London on Friday.  Dad will be here for the weekend, too.  Crap.  That's alot of people.  I can't wait to see Travis.  It's been two years. 

We have counts and an exam on Thursday.  Then it will be time to hunker down for the weekend.  Due to "bug" exposure, Gregory and I will not be going anywhere on Fridays, Saturdays or Sundays.  Just way too many people around to risk it.  Not only can he not get sick, I need to keep my health, too.  Except I may sneek out with Travis to grab a Brewski at Big Time and cruise The Ave a bit.  Haven't had a chance to do that, yet and I'm dying to get down there.  See what changed and what is still hanging around. 

I'm missing the people at the SCCA Unit at Seattle Children's, already.  Wondering who's on staff and how everyone is doing.  We will be needing to pick up his new antibiotic, probably tomorrow.  They will be calling it into the pharmacy at Seattle Children's.  We will stop by to say HI at that time.  At least as long as Gregory is feeling up to it. 

Time for me to check his "feed bag" (the bag that holds his nG feeds) and unplug for a bit before catching some z's.  His next medications are not due until 8:00AM.  Whoop! Whoop!  I'll catch you all later.  Gotta jet.

I'm so vain....

A whole lotta stuff.

I've been sitting here trying to decide where to start. Cannot think of a good place, so I'm just diving in. I hope you can keep it all straight. Please ask if it gets confusing.

We have been discharged as of 3:00 Sunday, August 2, 2009. Nine very long/short weeks have come to a close. While this will most likely NOT be our last visit to Seattle Children's, at least the first part is over. His counts had continued to stall, yet his Hematocrit finally dropped to 24. He received Red Cells prior to discharge on Sunday. I'm so grateful that it could happen while we were still in-patient. Out-patient red cell transfusions take forever and are quite a pain.

He has continued to heave nearly daily and his stools are getting looser and more frequent. I KNOW he has Gut GVH, we will decrease his Prednisone again tomorrow. At this point, only time will tell. I've had a little something-something brewing and I did not want to make a big deal out of it until it actually happened. One of my absolutely favorite photographers and truly all around fantastic woman, Heather Armstrtong, who lives in Canada, offered to take pictures of Gregory. Her work is so amazing.




We had an appointment for Saturday at 1:00.  Which, at the time of scheduling, this is usually a pretty good time for Gregory.  As it turned out, it wasn't.  Which was totally OK for me.  My purpose behind taking his pictures, while in-patient, was to document this time.  The hope of having a realistic "picture" of his time spent there.  Right after she got there, Gregory heaved.  It was a rough one, too.  He seems to be taking longer to bounce back from a throw-up.  After heaving, all he wanted to do was cuddle for a little bit.  He did perk up a little, but the shots Heather was able to get are awesome and a perfect representation of that moment.  The rest of the pictures can be found here:

Gregory's Seattle Children's Pictures.

Heather's web site is here, her work is so awesome:  Heather Armstrong Photography

Heather, thank you, thank you, thank you.  You did it, again.  I knew you would, though.  'Cause you really are that good.

After our little photo shoot, we went out on pass.  We have been going over to the apartment for four hour "passes" between 4-8pm.  Just a little break for Gregory and I really wanted him to see and get a little comfortable with the apartment before we made the big transition.  Saturday, around 5:30 he started to complain of upper side pain on his right side.  With someone as little as Gregory, you can never be to sure where the pain is originating from.  The pain would wax and wane.  Yet it was pretty intense.  We rushed back to the hospital, just in case.  He is still fighting the BK Virus and we really weren't sure what was going on with the pain, 'cause it's the time of night when his BK really starts to get to him, too.  We had oxycodone waiting, in case he needed it.  Around 8:00 he passed a ton of gas and promptly fell asleep.  Sounds like gut to me.  He is my night owl, so for him to fall asleep so early, he was exhausted.  Pain will do that to you. 

Sunday was such a blur.  We knew that Sunday was The Day, several days ago.  Yet, I did not pack/move anything.  It's happened to us before that we have had a projected discharge day, I've packed diligently, only to have something happen and we wind up staying.  This time I  just let it all sit, until it was official.  We had nine weeks of stuff. Ugh!  Thankfully, dad was here to help move.  I did all the packing, but dad was really the one who moved it all.  I have enough stamina and energy for Gregory, but frankly, not much more.  As we were making our final "walk", it really hit me.  Since it was a Sunday, the unit has a different, more vacant feel.  We got to have our favorite nurse, Jill, for Saturday and Sunday.  I stopped to say good-bye to another favorite nurse, Elise and I  just lost it.  I sobbed all the way to the exit of the hospital.  Meanwhile, Gregory was peddling along beside me on his tricycle, oblivious to his Mother's emotions.  

The Tears.  Leaving the hospital is such a mixed bag of emotions.  Least of all is joy or relief.  Gregory and I are beginning the part where we are doing it ourselves.  While there is still a ton of supportive, outside care, they are not right outside your door, day and night, ready to administer whatever it is he might need.  His acute needs have diminished, but we are going out with the BK virus and the needs that this includes.  I'll post pictures soon, but his medications are numerous and he is on 16 hour nG tube feeds and 10 hour IV fluids. 

Sunday, after we had everything in the apartment, Gregory started have alot of groin pain.  I gave him what I thought he needed and eventually it quieted down.  It did take a while, though.  When it was time for his bath, I took his diaper off and low-and-behold, he had tiny blood clots in his diaper.  He needed to pee, before his bath, I watched him pee a little bit of blood.  I knew this came with the BK virus, but Gregory has managed to skate through this part.  Until now.  There was no way we were going back into the hospital that night.  Besides we had clinic the very next morning.  My instructions were, that as long as I could keep him comfortable, he did not need to be in the hospital.  Which is what we did.  He slept well last night and did not have anymore blood/clots in his diaper until this evening and it was a tiny amount.  Last night was the first time for me to run his feeds and hook up his IV.  It went really smoothly.  Albeit, nerve wracking.  I did not sleep very much.  Tonight has been really relaxed. 

This morning we I was up at 6:00 to prepare for our trip to clinic.  His first appointment was a lab draw at 8:45.  Why so early?  You ask.  They are measureing the level of Tacrolimus in his system and his blood draws need to be as close to his next dose, as is possible.  His AM dose is at 8:00.  We simply hold the dose until labs are drawn.  At promptly 8:00, I scooped him up, still sleeping, and we headed off.  Everything was going smooth as silk, until we hit the floor for our Nutrition and Clinic visit.  We got settled in the waiting room, I gave him his Tacro dose ('cause he had already had his blood drawn) and he started to play a video game.  Within moments he needed to heave.  Thankfully I had brought an emisis basin, wipes and a change of clothes.  Not only did he heave, but he stooled pretty good, too.  He also still had his feeds going.  Stored away in a cute little back pack for him to carry.  He met all of this with the same grace that he has shown throughout.  He did not get upset or frustrated.  I cleaned him up, we found somewhere to change and we took care of it. 

Here comes the technical part.  Stuff that I need to get down, just to get down.  His white count is dropping a bit.  Well, maybe a lttle more than a bit.  He is on an antibiotic, Bactrim.  It's a prophylactic.  The one draw back is that it can suppress counts.  Which is what the team thinks it is doing.  We have discontuned using it for now and it will be replaced with Dapsone.  There is a blood test that needs to be completed before we can start it, though.  I can't remember what it is, I will follow up on that.  His platelets are also diving, a bit.  Nothing alarming, just a dip.  If he truly is experienceing Gut GVH, combined with the blood in his urine, it's no surprise that his Platelets are being effected.  We also discontuned his Pyridium and Oxybutinin.  I guess there have been studies that indicate that the use of these drugs, for urinary issues such as Gregory's, is pretty useless after a week of use.  It it's true, I'm awfully thankful not to have to mess with them.  The pyridium comes in a pill that I have to split, crush and mix with water.  It's a nasty yellow color, makes a mess and stains everything.  Gregory has the clothes to prove it.  It makes the urine  bright yellowish orange, too.  The puke, too.  Everything.  It also means that his medication schedule has lightened up a bit.  Yay!!  He had a bit of blood, tonight, but fell asleep at 8:00 and has slept peacefully since.  It's now nearly 1:00.  *shrug*  I'll take it.  Early morning clinic wiped him out.  He did not nap today, either. 

Now that we are settling in, I am hoping to post more regularly.  It is better for me, too.  I sit here and try to remember everything I wanted to get down and end up missing alot.  Even though I have alot of work, there are a ton of things to be grateful for:

Refridgerators
Freezer's that make Ice
Personal Showers
Washer and Dryer
Privacy

We are far from organized, over here.  There is time for that.  For now we are together and finding our way.  Thanks for hangin' with us.  'til later, gotta jet.