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.

The Face

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:

Freezer’s that make Ice
Personal Showers
Washer and Dryer

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.


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in anc, bk virus, days 51-60, editor's pick*opensalon.com, gvh, ng tube, ronnie donnie, steroids, transition to out-patient. Bookmark the permalink.

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