Wednesday, April 6, 2011

Calm before the storm...

Tonight (Tuesday) I’ve been given the lap of luxury. I’m staying in a five star room complete with housekeeping, service with the press of a button, LCD tv, a single bathroom and stand up shower and many more. The best part of the room besides the button-o-service is the bedside commode. If I’m too lazy to walk 5 ft to the toilet I can just plop right over into the bedside one. I’m a bit confused about the toilet in my personal bathroom though. It seems to be about 12 inches off the ground, and although I don’t mind looking at my knees, they aren’t that nice when they’re inches from my face. The lever to flush it seems to be oddly high as well. It’s at least 3 feet above the top of the toilet which is just strange. The best part of this room however is that it’s free, I’ve finally gotten the opportunity to attempt to sleep in a real bed, granted it’s a hospital bed on the floor below, I think a good nights sleep is needed, so I’m going to try it out.

The adjustable bed is making me sick, I found the button to move it up and down, I’m hoping to get a good ab work out but I don’t feel as if it’s working as it should. I’m doing the motion for the crunches, but I think I might actually have to do it instead of pressing the button. I wish life was that easy. I won’t lie; I sort of miss the noise and snoring of the house. I invited a few staff members to check out the pad today, but I think they invited a lot of their friends because it’s packed! There was a lady who came into the icu today around 5 and she has a ton of family. They rival our family for the first couple days. I don’t think they’re staying all night, but the party is going to outlast me. I feel bad, Chris is taking the night shift, and if you know her, there is no arguing, she usually gets what she wants. Believe or not she scares me and I don’t want to experience her wrath. I’ve seen when she’s been unhappy with the care dad has gotten, and when I finally got the courage to stop cowering in the corner and checking to see if I soiled my pants I realize that she wasn’t angry with me but the nurse who was not listening to her and the issues she expressed that needed to be attended to.

I have given Chris a hard time and it’s strictly been joking, contrary to popular belief I do like her. I’m leery to write this portion as well because I feel I can’t be too nice to her because that is completely out of character for me and she may have a heart attack as well, and dealing with two would be way too much for me. So contrary to the little dude on my shoulder (Steve as I call him) telling me not to continue, I’m not going to give into him and I’ll continue on. I couldn’t have asked for anything better to deal with a situation like this. Chris has been *cough*amazing*cough* she has really shown her love and willingness to do what it takes to further my dad’s recovery. She’s willing to stay up hours on end to help calm him down or rock his bed (Which actually really does work). She puts up with constant neck pain and increased stress, she puts up with my lame jokes and sarcasm, and she makes sure we all agree on something before it’s done. She’s been great, I’ve always noticed how happy dad has been over the past year and eight months, she’s put a different smile on his face. It has been difficult at times having an actual mother figure in my life because I went without one for so long. I have been fortunate enough to have many people in which I have termed “adopted moms” or family members who have filled the role wonderfully, but it’s overall different when it’s your actual step mother. I’ve seen over these past two weeks the love that she really has shown for my dad and all of us. I really couldn’t ask for anything more. Actually come to think of it, she could make me pie and be a little kinder to me, but as she’s been telling me recently it’s not all about me (which I totally disagree with).

I woke up today to a few different encounters, the first sounded like someone was next door running into the wall over and over again, the second was the cleaning lady walking into my room and mopping the floor, and the third was my phone ringing. I didn’t find the sound of someone running into the wall that unusual because I was on a pediatric unit, and I figured that it was just some crazy kid. I did eventually realize that it was just the floor that was getting buffed and in fact not a crazy kid. As I eventually got out of bed, I realized that it didn’t seem that much longer than my usual cocoon, and that my back in fact did not enjoy straightening out last night.

Chris was a trooper last night, and when we talked on the phone the first words she said was “tag, you’re it.” I came up and she said that he had a rough restless night. He would flail (not quite the appropriate word) and squirm for 4 hrs and then wear himself out, so he would sleep for about an hour and then start over again. She talked to Denise (one of my favorite nurses) and there was concern that he now has a UTI (urinary tract infection) which is usually easily treated with medication. There was also some concern that his trach may be infected. The doctor who put it in came to look at it, and said it doesn’t look bad, and that the drainage is from stuff (Collagen) he put in to help it clot and heal. He really had no concern over it, but he ordered a specimen to test and make sure.

My shift so far this morning has been crazy as well. He squirms in every direction for 30 seconds or more and then relaxes for about 20 seconds, and it’s gone on for hours. We rolled him to the side he seems to enjoy the most, and it went on for a bit longer. We’ve (and by we I mean Denise) been trying to figure out a way to give him medicine that will keep him relaxed for the longest period of time but not over medicate or keep him overly sedated. By the end of this I think I’m going to have muscles like I’ve never had before (I know they’re already impressive).

He’s been way too restless to try and take off the vent as this time. His heart shouldn’t work overtime and it needs to relax, so we’re not sure what the plan is for weaning the vent today. One of the doctors has prescribed a new anti-anxiety drug, and we’re hoping that helps calm him down as well. They were considering one that is an anti-psychotic in which I took note of because Chris or I may need it by the end.

I’ve said it numerous times before, but it’s so tough sitting in here and feeling helpless. I haven’t been successful and keeping him calm for long periods of time. I have no idea what he wants or what will make him comfortable. He’s still running a temperature so we’re trying to keep a moist cool cloth on his head, and position him to what looks comfortable or a position to minimize the risk of bed sores, but as soon as we move him, he goes into the same exact position. It’s hard to get a read on what he’s saying through his eyes. When he was on the vent the first time, you could see the fear in his eyes and I really felt like he knew I was here, but this seems different. I know he’s been on the drugs and sedation for a long time which is never really good.  And that is probably affected the way his eyes look. He hasn’t really focused on anything and it’s more of a blank stare than anything so far. The part that makes me have a little more ease is that I can’t see the fear in his eyes as I did before. It could be because the tube is out, or he’s just too sedated to think to the point of fear yet.

Today has been a crazy one. I’ve been in the room getting kneed in the face or on the phone trying to get advice the entire day. Dad has been one active guy in bed. It’s been different over the last 24 hours than it has in the past. He’s squirming a ton, but it’s more like a twitch. It appears as if he’s trying to get something off of his back, but then it’s more than that. We’ve tried turning, repositioning, scratching, talking and anything else you can think of under the sun and nothing has seemed to help. We’ve been frustrated to no end that we can’t seem to help him. I’ve consulted a few great friends who know a heck of a lot more about this stuff than I do and they have given great sound advice. It’s been difficult today feeling that the doctors haven’t been considered with his changes. Denise and Janet (a nurse orienting for ICU) have been great at listening and trying to help as much as they can. Denise has been our main nurse and has noticed a change and has been proactive with us.

After Chris trying for the past 24 hrs, we finally got the ball rolling on more testing. The plan is to do an echo tomorrow to see what the strength of the left ventricle (portion of the heart, that pumps blood to the body) is at this point since it is no longer on the balloon pump.  There may be a potential we’re going to do a CT scan as well to test neurological issues to see if there is anything going on in his brain that may have happened during the fall or something that has happened since that. The seizure like twitching may be a sign of something going on in the brain.

I’m not sure how well I’ve explained it before, but there is a setting on the vent called PEEP (positive end expiratory pressure). It’s kind of confusing but I’m going to try to explain it so that everyone can understand. First you need to release a little about your lungs. You breath air in and it goes through some tubes and eventually to little balloon like things called alveoli. The alveoli help with the exchange of oxygen(and other gases) with the blood stream occurs. The peep is the alveolar pressure above atmospheric pressure in your lungs. Basically in a nut shell, it helps keep those alveoli open. The physiological setting for a normal sized person is 5. If you’ve met my dad he isn’t normal sized, he’s a big guy, so it’s likely his peep is higher than a 5. We’ve been struggling trying to get them to raise it from a 5 that they had it set at for the last day, to a higher number so he can get more oxygen. Once they actually agreed to it, he has started to rest peacefully going on 2 hrs right now. We fear that the reason he was struggling so much, was because he was struggling to breath, and that doesn’t set easy with us at all. 

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