Why couldn’t I get that day over and over and over?

Gregory and I are sitting here tonight, diligently watching Polar Express for the upteenth million time and I glance at the clock. It’s 10:00. At night. I realize that I have not spoken to anyone today. Not Mom, not dad, not Larry, not the OffSpring. Gregory had reached that point where, when he is not feeling pain, is needing extra distracting. Being between these four walls must seem like one heck of a limbo-land for him.

Today’s Counts: Platelets ~ 63, Hematocrit ~ 28, ANC ~ 1978, Weight ~ 13.4
(Quick note on his ANC.  I will explain in further detail later but…….  Don’t let this big number fool you.  He still has an ANC that DOES NOT  function at full capacity.  He still has too many of some components and not nearly enough of others.  I spent a ton of time today , trying to learn more about the composition of White cells and how they relate to the ANC.  I’ll fill you all in, soon.)

We’ve actually been pretty busy. I’ve been frantically trying to find things that he will eat. I’ve pretty much given up on coaxing him into eating. I had forgotten that he does not eat much when he is in-patient. I am hopeful that once we are in the apartment, his appetite will pick up. We are currently on 60ml/hour for 14 hours, on his feeds. The goal is to get it to where we can run it when he is sleeping, only. I really don’t think we will get there. He is still heaving once a day. We have also moved EVERY medication, that we can, to oral. Along with reasonable dosage times. I won’t need to set my alarm for an early morning medication. His tempermant has been outstanding. Except for right before bed and right after waking up. He has these super acute bladder attacks. Major bladder spasams and intense itching. From onset to the drugs kicking in, it takes at least 45 minutes. Forty-Five minutes of writhing in pain, trying to dig into his groin (thankfully through a diaper, nice cushion) with tears running down his face. Then once the drugs kick in, he calms down and it’s like nothing happened. His face is quite puffy, afterward, from all the tears. Talk about feeling helpless. There is absolutely nothing I can do to help him. This is the reason we are in-patient. He gets a Morphine bolus and benedryl. I could not have anything handy that would act quick enough. Even in the hospital it takes 45 minutes. Ugh!

We got outside again, today!! He is really enjoying our outings. The only downside is that since he is more physically active, his blood pressures are consistently elevated, after we have been out. Even at midnight. He has received his blood pressure med, every evening that we have been out. How much longer until we are through with prednisone???

The only routine IV meds we have left is fluids and Magnesium. Which he will continue to receive via IV, once we are outpatient.

I cannot seem to write a coherent entry, lately. Constant interruptions will do that to you. There’s been some pretty crummy news around here, lately. Along with some amazing moments. Right now I just DO NOT have the energy to go into it all. I do NEED to give a shout out to Mighty Maddy and her family. I’m sending all I’ve got to you, girl.

I’ve been up since 3:30 this morning. If I fall asleep with Gregory, before 12:00, I have a habbit of waking up for 4:00 vitals/labs and not being able to go back to sleep. I’ve reached my threshold. Time to hunker down. Love to you all. I know there are a ton of you that I have not responded to. Know that I have not forgotten and I do receive all your communications. I appreciate every last one. Someday I’ll have time/energy to devote to each one. ’til later, gotta jet.


I love natural light!

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in anc, days 31-40, medications, ng tube, pix, steroids. Bookmark the permalink.

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