Baby Steps

Jan. 31, 2010

This past Thursday, Mark's throat tube vent was replaced with a tracheotomy vent. This has proven to be much better for him comfort wise, as well as vitals wise, as since switching to this, his pulse ox has been much better.

The apparatus that was used to secure the throat tube in his mouth, has been removed from his face, and the feeding tube that used to be through his mouth is now repositioned to be through his nose, making everything much more comfortable for him.

He was also placed on constant dialysis to help clean his system out because his kidneys just weren't doing enough. The damage to his kidneys from his code (two weeks ago) was just a little too shocking and they're just taking too long to heal. The doctors have assured us that they will heal eventually but their own healing process is too slow for all of the other stuff that's happening in his body. They're just not strong enough to handle filtering out the toxins that are being released from the breakdown of the leukemia cells, so this is why the dialysis was begun.

It has proven to be really good for him, as ever since the dialysis (and trach actually), his vitals have improved quite a bit. He's had a little bit of trouble with his blood pressure and heart rate though. For about two days after the trach and the dialysis, his blood pressure would randomly decrease dramatically and his heart rate would bounce all over the place. They gave him some meds to regulate both, however, this morning (Sunday), they stopped both and he's been maintaining both on his own. (VERY good news).

After the trach was put in, they started to back off a bit from his sedation, waking him up more. Between Thursday night and today, Mark's been waking up, and has been more lucid than he's been at all in the last two weeks. He's still a little bit doped up, and he can't figure out yet why we can't hear him when he tries to speak, but he does understand everything and he does respond to you. (When I walked into his room on Thursday night and went up to him and kissed him, his flexed his feet and his eyes flew open, and I got a nice, big smile out of him...it absolutely made my entire week).

It's been a tough couple of weeks on everyone, but on Mark especially. He's been fighting his ass off you guys. I think when you walk into his room, you can feel it. You can sense this really strong energy coming from him. Yeah, he's hooked up to a bunch of crap, and he's tied down to the bed, but he's fighting, and he's in there, and he's getting better. Stronger. The day it was most apparent to me was on Friday night when his oncologist came into the room to chat with me. She went over her theory as to why we still hadn't been seeing any decrease in his white count and she thought it was because he was receiving the subcutaneous shots in his belly and that's where he's been retaining a lot of fluid, so she was concerned that it wasn't sufficiently being absorbed into his body. She ordered that he start receiving the shots in his shoulders instead. After her explanation, she said, "Leslie, I want you to know that there is a very large group of people, here at The University of Chicago Hospitals that cannot get your boyfriend Mark off of their minds. While yes, our team meetings about him are only on Tuesdays, none of us can stop thinking of him, none of us can stop trying to figure out why this young man is still laying here in this bed. I promise you, he is a fighter, and we are all trying to get him better, it's just unfortunately a very slow process." Then, it was here that Dr. Odenike showed a very compassionate and human side of herself that I actually appreciated very much, she started to cry a little bit. The resident that was standing with her in the room, put her hand on her shoulder, and she continued speaking and said to me "I am sorry, I know that there are many doctors that are stoic and do not show much emotion, but there are also doctors that are not like that as well, I am one of them. I care very much for my patients, and I want you to know that Mark is very special to me, and I can tell by how many people I see here every day, no matter what time of the day it is, how special he is to everyone too." I thanked her, she hugged me, and then left the room to finish her rounds.

Today, (Sunday), a cardiology team was brought in because of Mark's heart rate. The main cardiology doc told me that Mark has what's called "Atrial Flutter"; wish is like a un-synched heart rhythm. He assured me that this is very common in patients that have other large organs that are in distress and that are in a state of recuperation. He believes that Mark's healing lungs are causing this irregular heart beat. He's put mark on a beta blocker called Esmolol. This will help not just with the heart rhythm, but also with blood pressure and will also make it easier to help get some of the fluid off of his abdomen.

What I took from all of that was that he said "I believe it's because of Mark's healing lungs that's causing this irregularity". His lungs are healing. This is outstanding news.

Also, as soon as his oxygen needs are lower, Mark will be given an attachment for his trach tube that he'll be able to put on the end of the tube in order for us to be able to hear his voice.

As I said earlier, yes he is lucid, but he's still on the Versed drug which really messes with your short term memory. When he wakes up and is communicating with you, he's very confused about what's happening, so you just have to remind him of where he is, and why he's restrained, (so he won't pull out the tubes that are keeping him safe and healing him). It breaks your heart because then he falls back to sleep and then when he wakes up, you have to go through it again. Last night he was awake for a while and I was able to update him on a lot, and I got to the "you've been asleep for about two weeks", he mouthed "bullshit", and he laughed. It's okay, I feel like every time he wakes up, he does remember some stuff, just not everything. I can't wait until they stop that particular medication and he can begin to retain what's going on. If only because you can tell how frustrated he is. He's getting there you guys, I promise.

As it stands now, his vent settings are about a 9-10 peep (they keep moving back and forth between the 9 setting and the 10 setting, but hey...it's not 20 which is what he was before), and he's at 60% oxygen and they just told me today that he's in charge of his own breaths now. AWESOME!!! So when this decreases even more, he'll be able to communicate with us a lot better. When he's awake and lucid, he's talking and talking and talking a mile a minute, trying to say stuff to us and trying and trying to express himself. Unfortunately, not 1 of us are very good lip readers. The only things that any of us can ever make out are "water", "this is bullshit", "home" and (my favorite) "I love you".

So, we've had two very good days...VERY good days. It's very exciting and yes, I'm happy for them but because ICU is so damned unpredictable, and things could change in a moment, I'm not going to be as overjoyed about it until they say to me "we're moving him to a regular room" and we're out of there. That day will come, we all just have to be patient (one of my biggest, personal lessons in all of this), and continue being there for Mark, and when he's better and we can hear his voice, I'm certain he'll have a LOT to say to us. I'll speak for everyone and say, "we can't freaking wait."

(Blood count update, I'm working on a document that I'll be able to share with all of you via a link. It's not done yet, but I'll post the link to it later when I have the whole thing typed out. As the days tick by, listing the counts the way I've been listing them is getting to be too much, so I'm putting them in a spreadsheet that's much easier to read and to compare the days).

Love to all of you.

-Leslie