Tuesday, January 26, 2010

It's The Good Days That Get You Through The Bad Ones

Jan. 24-Today (Jan. 26)

If there were bigger things to report, I would be posting more frequently but as of right now, everything is pretty much the exact same, with little bits of good moments and good progress here and there.

Today marks day 10 of intubation, and last night I can certainly say was one of the best evening's Mark has had in a while.

Last night while I was with Mark, I went up to him and just looked into his face. He very calmly opened his eyes, and very lucidly looked right at me. In the last handful of days, he has been opening his eyes but he's clearly hopped up on the goofballs and isn't very "there". THIS TIME, he was 100% there, so much so, I could hardly believe it. I said "honey, can you see me and hear me?" In response, he very clearly nodded yes, and didn't take his eyes off of mine. He lifted up his hand and grabbed mine and squeezed. It was a pretty outstanding moment, and I hugged the nurse that came in right after that. After prolonged eye contact, and me whispering encouraging things to him, he fell back to sleep. For the next three hours or so, this was his pattern about every 10-15 minutes at first, and then more frequently. As he started to awaken more frequently, and stay awake longer, I would remind him of his intubation, and he'd scowl and shake his head "no". (I.e. he doesn't believe he's been sleeping for 10 days, thank you amnesia medication). As the windows of wakefulness became more frequent, he'd become more and more agitated as he realized more that he was tied down and unable to touch his face/breathing tube. I just wanted to make sure he wasn't in pain, as he kept twisting on the bed and kicking his feet, all with a clearly irritated scowl on his face. I said "Mark, are you in pain right now? Do you need more pain medication?" And he looked right at me again, and clearly shook his head no. I said "Would you like me to turn your music up?" He nodded, and then fell back to sleep again. When he woke up again, he reached for my hand, and squeezed it again, and I told him to be calm, and relax and to try and allow the machine to help make him better, to try to not fight against it, (which he was doing by chewing on the breathing tube, and breathing really fast causing the machine alarms to sound). He did chill out a lot.

Before I left last night, I had a talk with the doctor and asked that he make sure that Mark was sedated through the night only JUST to make sure he was sleeping comfortably, as I didn't want him to come to full wakefulness without a loved one there to calm him down. Also, the longer he was off sedatives, the higher his heart rate would spike really high, and he'd upset himself. Doc agreed he needed time to chill out and rest, and he gave him some more Versed to chill out and sleep.

Most of the night last night, his pulse ox was at 95, and his heart rate was at 90, (when he was getting agitated, it spiked as high as 165). The breathing machine was at a 10 peep, and at 60% oxygen.

(Explanation of Ventilator settings: when you see me mention his "Peep" setting, that can best be explained by how much pressure there is, within Mark's lungs, after he exhales. Right now, the machine is assisting him a lot in the initial taking of the breath, and every time we all exhale, there is a little bit of pressure left in our lungs which keeps them inflated and able to receive more oxygen by our next breath, (otherwise our lungs would collapse). This extra pressure within our lungs (that keeps them in a "balloon-like" state), is called a Peep. You and I have a "peep" of 5...so peeps are like golf scores, the lower the peep, the better. At the beginning of yesterday, he was at a peep of 12, today he's at 10, which is good news. The way they determine how much to start backing off from the peep and thus weening him off of the ventilator, is by how long he can maintain a healthy, mid 90s pulse ox, and steady heart rate. He needs to maintain healthy settings for both, for over a full 24 hour period before they'll even consider turning down his peep.

Also, he's currently receiving 60% of his oxygen from the machine, which is a setting we also want to eventually decrease. So you have to think about the fact that the whole interior lining of his lungs are fluid filled. And think of it as like a sopping wet sponge, an already wet sponge can't absorb more water, so first it has to dry out in order to do it's job. Make sense?)

This morning, I spoke with his nurse and he's still on the same ventilator settings; and because he's spiked a fever, his heart rate is up as well. (Elevated heart rate is expected with fevers, and fevers are expected after his shots of Campath, which happened last night at 10:58pm). Unfortunately, his pulse ox is bouncing between 89-91 again, which is too low to consider moving down on the vent settings, (which could totally change by this evening).

Last night was seriously an indication that he IS getting better though. I haven't seen him that lucid, with such amazingly strong vitals in a while.

I haven't had a chance to get updated blood counts, but I will tonight and try to update them before I go to bed tonight, (if I'm not too completely exhausted when I get home from the hospital).

So, again, he's getting there...it's very...very...very slow.

His kidneys are much better for sure, his legs aren't as bloated, and these are all good things to hold onto to help us all get through some of the more crappy days that are inevitable in the ICU.

Keep the faith you guys. He is bouncing back, he's just taking his sweet ass time which I'm totally fine with. ;)

Love to you all.



  1. Thank God. Keep on keepin' on Mark. For serious.

  2. Mark is very lucky to have you as his advocate. Thanks for being there. Dick and Kandi Vancura

  3. Please tell Mark that Dina (Lucia) Weiss is pulling for him and that whether he likes it or not, I'm praying for him. Leslie - thank you so very kindly for being such a diligent poster. I only found out about Mark today, and my heart just sank -- he's one of my oldest friends. I wish you all the strength in the world, dear, and please know I'm praying for you too.

  4. Hi Leslie - I am a friend of Marks from years ago in Chicago. Billy Halloran told me about Mark's situation and I am still in shock. I saw Mark Halloween of 2008 - of course he had the best costume - dressed as a giant IPOD - still brings a smile to my face. As you have said in all of your posts Mark is a strong man and I know he will get through this. I hope to meet you when Mark is better and we can all celebrate.
    Lots of love, peace and healing thought being sent to you and Mark.


  5. Leslie, You and Mark are meant for each other, explaing peeps with a golf analogy! I agree slow and steady wins the race. Take care and positive vibes from the Howe's..Jamie Ron and kiddos

  6. Hi Leslie, I am Sandy Streit's sister. I knew Mark from his HS days when he dated my sister. My love & prayers to both of you, as you fight this war in his body. I send you only positive wishes & thoughts. Keep the faith!

    Lots of healing hugs & love,

  7. Mark, you have been on my mind in a fairly relentless way since I found out about this fight for your life a few days ago. I've slid back in time, seeing a very young you flying down the street on your skateboard, tape on your glasses, always enduring so much, and surviving against all odds. You've endured more than anyone should have to. But survive, Mark! I am checking this blog every day for news of your recovery. Don't disappoint me. Leslie, your strength at this very rough time is obvious, as is your love for Mark. I genuinely wish you both all the luck and goodness from the universe that's available. ~Carmen Lucia, a neighbor and friend from way back in the day