Thursday, July 30, 2015
Mark hated his ng tube when he got it last week, but he has gotten used to it. They gave him a weighted one so that it is harder to throw up and the tubing is thinner. We spent the next several days working him up slowly from 5 ml per hour of feeds (1 tsp!) to 45 ml by Tuesday morning when we were admitted. He did great that first night, but we did have to drop his feeds down to 25 ml per hour to help with nausea. Yesterday we dropped it again to 10 ml, which is where it is sitting now.
This morning I met another mom whose son has brain cancer - choroid plexus carcinoma. He turns three next week. We are Facebook friends now. His name is Henry - please pray for them!
Mark has been pretty miserable today, but he's not able to tell us what's wrong. Not sure what to do about that. He's been struggling with acid reflux and hiccoughs. They put him on a med for the acid reflux. The hiccoughs are a side effect of one of the new anti-nausea meds they put him on. They're driving him a bit crazy. His potassium has been super low, so they are suplementing that. Nothing so far, though, that should make us have to stay past tomorrow :). Thanks and hugs to you all!
Tuesday, July 21, 2015
Saturday, July 18, 2015
Wednesday, July 15, 2015
Got to go. Hugs!
Monday, July 13, 2015
Today all of my family (that live with me) came to visit! Frank stayed with Mark (which they needed) and I got to go with the children out and about (which we all needed). It was so nice to spend time with them. It has lightened the load and brightened my spirit. I am feeling much better.
Mark has been nauseated again today, throwing up this afternoon. He also spiked a fever again this morning. The last blood culture came back negative (meaning the fever was not from a blood infection), but they had to do another one with the new fever. We currently don't have a target day for leaving. Sigh. But right now he is sleeping soundly finally (they wanted him to stop the morphine so we hadn't been doing pain meds today, but Mark finally admitted he needed them and so he is more comfortable again).
He also had to have another red blood cell transfusion. They're expecting him to need platelets again tomorrow because they are dropping as well (that will be his fourth platelet transfusion this round).
I'm feeling like a broken record. The doctors suggested maybe we should start weaning him off the iv meds again. I said I feel like we are exactly where we were last Monday, except now he feels worse and has a fever. They didn't push it.
One good thing, though, is his WBC was up to .2 this morning. It's been under .1 for a week, so the slight upward trend is encouraging. I think right now they're just hoping he starts to feel better as they climb.
Sunday, July 12, 2015
On the downside, he's begin hallucinating, which he hasn't done at length since after his brain surgery. We weren't sure what was causing it then either. There are a number of variables with all of the meds he's on. Last night we had to put the bed alarm because he tried to get out of bed a couple of times while he was disoriented - one of the times he kept "yelling" happy birthday as he struggled to get up.
The Dr got to see it today. I woke Mark up while he was in the room. Mark looked at me and at first didn't really see me, then he focused on me and startled, looking very alarmed. He reached out and touched my face and asked me what was wrong and why I had turned blue. I told him it was ok, I'd turn back to my normal color later and he could just go back to sleep and not worry, which is exactly what he did. Its strange because he's aware of what is going on but he sees other things in addition to share really here and he mixes things up. It's hard to explain. He told Frank yesterday he kept thinking the IV pole was Joseph.
Between that and his headaches they're considering doing an mri this week. We'll continue to keep you updated. If nothing else, it's definitely keeping things interesting. Hugs to you all and happy Sunday! God is good, all the time :).
Saturday, July 11, 2015
Frank came to relieve me tonight. I packed up all of my stuff, briefed him on all the "important"things he needed to know, and made it as far as the door of the room before I completely broke down crying. Other than the 2 nights I was sick after his second surgery I have been with Mark for every appt, hospital stay, etc, and I wasn't ready emotionally to let go of that. I'm not sure about all of the psychological reasons, but I just couldn't do it. My sweet husband held me while I cried, called home to explain the situation (because I couldn't bear to hear disappointment in my other children's voices), and went home to look after everyone.
I feel like it's a control thing - there is really nothing we can control about what is happening to our child, but I can do this one set of things: I can sit by him, argue for him, help him, hold the vomit bag for him. I can wipe his face when he's sick and lean in close to hear his words that are barely a whisper at this point because of the pain in his throat. These are the things I can do for him, and I wasn't ready to let that go tonight.
Friday, July 10, 2015
Mark has been not as nauseated, but much weaker and more fatigued. Not able to do PT or watch a movie. He didn't even attempt to eat anything today. Pretty sure that ship has sailed for now.
Thursday, July 9, 2015
I am busy typing an email and have to stop to figure out what he is talking about. A song is playing and it takes me a second to place it. "What?" I ask.
As Mark is falling asleep, we are listening to his favorite Pandora channel, based on the Newsboys. The song is "Give me your eyes" by Brandon Heath. (I am putting a link at the bottom so you can listen to the song if you have never heard it.)
"He's right," he repeats. "When we see people on the street or at the store, we treat them like NPC's."
(NPC = Non-Player Character, like the random background people in a video game that are of little importance and generally ignored)
"You're right. What could we do about that?"
"Wave at them. Smile."
So that is Mark's challenge to each of you tonight. I told him I was putting this on the blog and he smiled. He wants you all to go out tomorrow and work hard to not treat others like NPCs. Smile. Wave. Make people wonder what you're up to. Do it for Mark, because you never know what that person is going through. God bless you all! Good night.
The team came in a bit after that, hoping he'd be able to go home. He was just exhausted and moaning, and when they asked him if he wanted to go home, he said no, he wanted to feel better first. Back to the hall again. The doctor said (nicely) if he was going to bee miserable here, he might as well be miserable at home, that maybe going home would help. I agreed, but as we talked it seemed that the nausea had come back when we switched him off the IV meds back to oral. I explained that I had no wish to just stay in the hospital indefinitely, but if we could make him comfortable in the hospital by giving him IV meds, I would prefer that to taking him home and letting him be miserable.
We decided to use today to try a new anti nausea med and to put one of the other meds back on IV, then discuss going home again tomorrow.
After that he developed some severe pain in his legs. Once the antinausea med was switched back to IV and he had an Oxy, he began to feel better. We had a nice visit with Gen and Chi who had brought Nick, Bella, and Joe with them. He had a great PT appointment, and then he developed another headache which he rated at a 3 (which is high for him). Now he's resting again, and another Oxy is helping the headache go away. We'll see how he does over night. Maybe we'll head home tomorrow.
Hugs to you all.
Wednesday, July 8, 2015
His hemoglobin fell, so he'll have a transfusion for that either tonight or tomorrow morning. Otherwise he's been ok. Yesterday he was up until around 4pm, even making it to the chair to play a couple of hands of cards, then he got tired and slept. His legs started bothering him again around 9 and he was having trouble getting back to sleep. A melatonin did the trick finally, but in the meantime he was pretty miserable.
Right now we're watching Planes. He was playing Wii a little bit ago. His energy level is still low. We're so thankful for the tpn, though, because he still hasn't been able to eat anything.
The man who brings room service just left. He knows Mark and I both by name at this point, as does the housekeeper. He said see you tomorrow as he left. And so he shall.
Tuesday, July 7, 2015
Yesterday he was experiencing a tickling sensation in his bones which was causing him a lot of distress. It was decided that this is probably a sign of spreading neuropathy from the vincristine (one of his chemo drugs) he is getting (it happened last week when he received vincristine as well). They said it is causing his neurons to misfire and confusing the signals. This is also the reason he is hypersensitive to touch and pressure.
Today PT brought him a walker and taught him how to use it. We will be receiving one to take home from the hospital because he is still having significant issues with balance. Even with the walker, someone has to be with him at all times when he's walking because he is "tippy".
Last night I finally took time to look at our pre-cancer family pictures taken by our friends Emma and Will. It was so bittersweet and I had a hard time getting to sleep after. Praying to see him back to his cheery self someday.
Hugs to you all!
Monday, July 6, 2015
Mark had a great morning after the food thing was settled, but around lunch he became nauseated again. He battled it all afternoon until finally vomiting a little while ago. Still not eating anything, but they started TPN this afternoon so we know he's getting nutrition. Goodnight everyone!
So now for the update. This will be the last time I copy from facebook (at least for awhile). If you've already read the facebook posts, please scroll down to the dotted line for today's update.
July 3, 2:13pm
This is an important song that really touched my heart. Our pain is real, and that's ok. God has got this. He's big enough to handle our cries. This is for all my friends and family walking hard roads right now.
P.S. If posting, please sign your first and last name so we can keep everyone straight :).