Jaw breaking, tear duct activation yawns. Induced by exhaustion and extreme highs and lows. Very few highs, more like the altitude of speed bumps.
We were discharged Saturday. Suprised everyone. Gregory was just starting to not heave and we had begun to transfer all his meds back to oral, from IV. Doc decided that if Saturday morning went OK, we could leave. Well, Gregory did well and we left. There hasn’t been a day since, that he hasn’t heaved, but it’s down to once a day. Today it was twice. Except we are slowly increasing the concentration of his G Tube feeds. Normal concentration is 30 calories an ounce (one once = 30mls). We have made it to 22 calories an ounce. I think the concentration is an issue. He heaved 350mls today. His total G tube volume was 550mls. Ugh. He’s going to remain on TPN for quite some time.
Monday we were up at the crack of dawn to head in for our regular clinic appointment. No big deal, blood draw, exam, nutrition. Everything is set. Wednesday morning, I receive a phone call at 8:00. “We need Gregory to come back in. One of his blood cultures from Monday came back positive for an infection.” Crap. I decided to tempt fate and didn’t pack a thing. Last time this happened, doc sent us home with IV antibiotics from home. I was hoping that would be the case. Nope. We are currently inpatient. Again. Hopefully for only 2-3 days, though. We shall see. He hasn’t shown any signs of an infection, granted he’s on high dose steroids. Also, cultures were drawn on Monday and we didn’t get the call ’til Wednesday. Which tells me it was caught early. Thank you for weekly survelliance cultures! So, here we are, our home away from home away from HomeHome.
From what we can tell, Doc thinks Gregory has/had a viral stomach infection. Not sure what, but it’s what it looks like. Gregory is better, but only incrementally. His gut is in pretty bad shape and it’s going to take quite some time for it to recover. Provided he doesn’t have any Graft Versus Host flares, in the meantime. There is no timeline on this. We simply manage the symptoms and take it slow. He is still not eating solid foods, nor drinking anything except water. His stomach is just not ready and I won’t put him in a situation where he is going to feel even worse. One step at a time.
One reason Doc thinks Gregory’s symptoms were viral in nature: Gregory’s counts are recovering. Slowly. Ever so slowly. Yet they are coming up, instead of continuing down. I think the Bone Marrow Aspirate has been taken off the table, at least for now. It could change tomorrow, but that’s the name of the game.
One thing that is bothersome to me, is the fact that he has pain and tenderness at his G Tube site. He has very little movement, he sits/lays a lot. He hasn’t walked more than a few steps a day, for weeks. The site looks really good. In fact the nurses keep commenting on how good it looks. I’m not worried about infection. I just think that Gregory has moved so little, since it was placed, that when he does move, it causes a lot of discomfort. No one seems overly concerned about his level of pain, either. It often brings him to tears. It hurts him, really badly, sometimes. His little body has really been put through the wringer and it’s no suprise that this is the result.
I’ve had a really hard time, sitting down to write. Time has much to do with it. I have a ton of theraputic writing I want to get out. Here’s what I struggle with…… before Gregory was diagnosed I wrote semi-privately, for myself but to a very small, selected group of like minded people. I’m now putting words in front of a very large public audience. While the main topic is Gregory, there are things that come along that have more to do with my own opinions and beliefs than Gregory’s state of health. I find myself censoring my words or just plain not putting them down, in fear of offending someone. I realize that this is my space, I should have the freedom to say/write what I feel, yet I have asked everyone of you to support Gregory and keep him in your thoughts, with the hope of recovery and life. I have some pretty bitter and angry moments. Thoughts and expressions that are do entirely to ME and my experiences, than anything else. I do not want anyone, ever, never, to feel like I am passing judgement. Someone reading my words may take it that way, but remember, these are my words. My thoughts. I’m trying to learn how to write publicly. I know there will be criticism. For every ONE person who actually posts a comment, I’m sure there are 50 more wishing they had the guts to comment.
I guess what I’m trying to say is this: We need to agree to disagree. We need to acknowledge that we all have differing opinions and experiences. We are unique. We will never agree 100% on everything. Any issue that we have with each other has more to do with ourselves than the actual issue.
Can you tell I’m trying to set myself up for some hard stuff? We will see. My words. My timeline. I just know that Gregory’s counts are recovering. He rode his tricycle. His spirits were awesome Tuesday night/Wednesday. My heart is lighter, tonight and it shows. Larry, Curtis and AnnMarie stopped by the hospital Wednesday night for a visit. Larry sat with Gregory while Curtis, AnnMarie and I had dinner in the cafeteria. It was lighthearted and fun. I had a really good time with them and I think they did, too. Not a monumental event, but another moment.
’til later. Gotta jet.
Can you see how much better he was feeling?