What a strange Christmas Present.

It’s no wonder clinic days tap us out.  Yesterday was no exception.  We’ve had single digit temperatures for the last several days.  Yesterday morning I went out to start the car.  Loaded everthing into it and fired it up.  Closed all the doors, went to walk away and heard *click*.  My car has an alarm system that I never use.  These frigid temps are messing with the system.  All the doors were locked.  The car was running.  All my stuff was safely locked inside.  Well, except for Gregory, he was still sawing logs in the house.  At least I had the miraculous forsight to put my phone in my coat pocket, not in my bag, which was locked in the car with my spare keys.  Brilliant, eh?  It took AAA an hour to get here and we finally headed off to clinic.  Sheesh.  I’m looking for some off-set Karma, here.  My car ran needlessly for an hour.  Can you help me out?  Use your travel mug, use one less napkin, turn off the water when you brush your teeth.  Something, please?  Thank you!

Gregory’s gut is just not doing well.  He ralphed once over the weekend and woke up Tuesday at 4:30 moaning with belly cramps.  He hasn’t reached his feeding rate goal yet, either.  He also started throwing blood in his stool.  Not much, but enough for me to notice.  If I can see it, there’s plenty that I can’t see.  At clinic yesterday, we decided that it was time to try a G Tube.  A G Tube is surgically placed through the wall of the trunk, directly into the stomach.  The thought is that his nG Tube, which is place through his nose, down his throat and into his belly, is causing irritation.  Additionaly, he has had several placed over the last month.  Placement irritates the linings and he has a tendancy to ralph out the tube.  With a G Tube, it’s a direct shot to the belly and if he ralphs it won’t come out.  We are hoping to have it placed before Christmas.  Scheduling it is going to be a little tricky.  Since he is going to be sedated we decided to knock out a few other things as well.  He is going to have an EGD (GI Scope) to take a look at his GVH with some biopsies and a six month post transplant Bone Marrow Aspirate (BMA).  He doesn’t need a six month BMA, but since he will be sedated already, we are going to take a look and see how his marrow is doing.  His lab tests continue to be stable.  His ANC came back up.  Thankfully.  Tuesday’s stats:  ANC ~ 4224, Hematocrit ~ 36, Platelets ~ 230, Weight ~ 15Kg.  Since he is not receiving the nutrition he needs, his nutrition panel took a small dip.  Nothing to worry about, we just need to keep on eye on it.  If we are unable to get surgery scheduled for next week, Gregory will be receiving some supplemental TPN.  Through his central line, here at home.  Speaking of his central line, we have been able to successfuly draw his blood through his line.  Ever since we did the line study.  Not sure what’s up, but I’m so very thankful that it’s working.  Having to poke him in the arm for blood draws is so traumatic.  Once we were finished at clinic, we had to stop by our home health company and Gregory received his H1N1 booster.  He knew where we were going and knew what to expect.  It was really hard.  He cried and talked about not going.  We got through it and when we got home he crashed for a few hours.  Tuesday’s stress also meant that his gut flared.  He had increased diarrhea and cramps.  It’s such a delicate dance.  Placement of the G Tube means a hospital stay.  Most likely two nights, at least.  Which for us, makes no difference. 

Curtis and AnnMarie had their Winter Program last night.  Our Public Montessori program is getting so big that they held the program at a local high school auditorium.  We now have six classrooms.  Three for ages 6-9 and three for ages 10-12.  (AKA 1st-3rd grade & 4th-6th grade)  AnnMarie even had a solo part.  I’m hoping someone has it on video and can share it with me.  Please? 

I need to run and get Gregory’s feeds for today started.  I’ve only been mixing his feeds for a little over a week now and It’s kinda a pain.  All of you parent’s with Noonies?  Whoa.  What a pain.  I’m looking forward to the day when I can cook and prepare food for Gregory.  ‘Cause it will happen, it’s just going to take some time.  In case you were wondering:  There is a light at the end of the tunnel.  When it comes to bone marrow transplant, unlike other organ transplants, Gregory could eventually be medication free.  He will always be at risk of GVH flares.  Someday his new, donor marrow will learn to live peacefully within his body.  It could take several years to get there, but he will.  It’s just a matter of time and patience. 

Yesterday was day +180.  We are officially six months post transplant.  Half way through the first year.  With every day that passes his risk of relapse grows smaller and smaller.  A 40-50% risk of relapse in the first year tends to weigh pretty heavy on our hearts.  We are getting closer, though.  Doing out time and counting down the days.

I also found out something pretty cool.  As long as Gregory is “pediatric”, all of his future hospitalizations will be in the Hem/Onc unit.  Regardless of what he might be hospitalized for he gets to stay on the “clean” floor with the awesome rooms and even awesomer staff.  It’s kinda wild to think that his care will be unique for the rest of his life.  He has someone else’s blood and blood forming system.  The science amazes me.  ’til later, gotta jet!


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in #childhoodcancer, day +180, days 176-200, g tube, gvh, ng tube, on the water. Bookmark the permalink.

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