Some Support For Paul!

Hi All..
I know that a bunch of you have met me, but I think that George is the only one who has met Paul, my husband. Paul is in the hospital right now, he's had some serious problems. I figured I'd just let you all know and get some prayers and support for him.

March 27th, Paul woke up with an excruciating headache. He took Excedrin, and I even gave him one of my migraine pills, but nothing worked. Then, the right side of his body went numb, and he couldn't open his right eye. His right pupil was the size of his whole iris, and the left one was only a speck. I rushed him to ER at about 8am and by 10am he was in the OR for emergency brain surgery. He had a bleed on the right side of his brain that pushed it 17mm off center to the left. They drained the bleed, but found another deeper in his brain.

On April 1st, Paul had an angiogram done to try to see the bleed deeper in his brain. They determined that it was an AVM, but could not get a good picture because of the amount of swelling. They intubated him (a breathing tube) for this, and of course sedated him, but unfortunately due to his ICP (intra cranial pressure) being so elevated and his swelling being so severe they had to keep him sedated. The morning of April 1st is the last time I saw him awake.

April 9th, Paul had to have another surgery to remove more of his skull, since his brain kept swelling. I think he has almost the entire right side off now. They feel that the swelling has to do with the AVM that is deeper in his brain, but they can't tend to the AVM until several months after he recovers from this. The surgery did not reduce his ICP (intra-cranial pressure) as they hoped it would, so that evening, they had to induce a coma. He's completely out right now, theres a monitor on his head to measure his brain activity. They need to keep it between ideally under 6, normal is in the 70s. If it goes above 10, they need to increase the amount of PentaBarb that he gets to knock him out further. His temperature is also being lowered to around 88deg F to help slow down his body and give his brain a rest. As a result of the PentaBarb coma, his blood pressure is hyper sensitive to anything, movement, increase or decrease of IV fluids, so he is on drips to both raise and lower the blood pressure. I've seen it go from 115/75 to 210/140 in literally 5 seconds. It's a fine fine line that they have to walk to regulate the body of someone in a PentaBarb coma. Today his pressures are more stable, but we have to take it minute by minute, and he has to have constant supervision from nurses and teams of doctors. It's all waiting now. They say it could be days, it could be weeks.

Paul is still in the coma, but hopefully they will wake him soon. His pressures (BP and ICP) are a little bit better, and they are putting a Tracheotomy tube in hopefully tomorrow. They have been talking about doing this for a while, but can never seem to get all the people together to do it that need to be there for when it needs to be done. He's been intubated for 17 days now, and they like to put the trach tube in after 10 days of intubation, but he wasn't stable enough at first, now he's been stable for a few days, so it's just a waiting game for the doctors I guess. Once this is in, and they put a feeding tube into his stomach, if his pressures stay good they can start weaning him off the sedation. Once he is able to breathe consistently on his own after that, I guess they will take the Trach tube out. Unfortunately, they keep having to increase the amount of sedation they give him, the longer one is sedated, the more they get used to the amount, which in turn will make it take longer for him to come out of it. The half life of the sedation is 50 hours, so the more he has build up, the longer it takes for it to break down.

If anyone wants to, you can send an e-card through the hospital's web site. I know he's not awake to read them, but I have everything he's gotten so far on his bulletin board so he can read them when he wakes up.

Paul Humenik Rm J228 LVH Cedar Crest
Send A Card

Thanks again, I'll keep you all posted.
Keep him in your prayers!
Nikki

On a side note, I have had to deal with many bills and companies in the past few weeks. Although we're married, there's been alot of stuff that I'm unable to access. Even just paying bills has posed a problem, I call and explain the situation and am still not able to get anywhere with anyone. What I'm trying to get at is that if you don't have a power of attorney, please get one drawn up. You never know when something may happen, and trust me, dealing with people who tell you that "they're sorry for your inconvienence" when you tell them this horrific situation is the last thing you would want to deal with. We never thought about it, being so young and all, the thought never even crossed our minds. But now, even explaining that Paul has not been awake for a week and a half, hence why I can't have him call and give permission, I can't access any accounts, pay any bills, get any information, or do anything that he had not given me explicit access to. Just something to keep in mind.

You know I have the both of you guys in my prayers. I'd like to come over and go with you to the hospital one day to visit Paul. I wish the both of you the best of luck. You guys have been such great friends. Thank you so much for helping me out. If there's anything you or Paul ever need, I'll be the first to come help.

im really sorry to hear about this. i know you dont know me or anything but i've heard from a mutual friend that ya'll really good peoples. ya'll gonna be in my prayers and thoughts.

Here’s an update for you all.

On Friday, Paul got the trach tube and peg tube put in. The procedure went pretty well, so as of yesterday, they could start feeding him again, this time through the peg tube which goes right into his stomach, through his abdomen. They didn’t suction too much mucus out during the bronchoscopy, but they have been getting some out through the trach tube. They suction him maybe every hour or so, and trying to keep him cleared up.

Since he was doing pretty well, they started to decrease the amount of Pentabarb yesterday. They can only do it by the teensiest amount every day, they measure by microgram, and he was at 2.5mcg and now he’s at 2mcg. Hopefully today they will drop it to 1.5mcg’s. After he’s weaned off the Pentabarb, they can start weaning him off of the Propofol (the other sedative that he’s on) and he’ll be awake. Well, it will take a while for it to get out of his system, but once it’s out he should be more coherent.

This morning, Bonnie came in to brush Paul’s teeth and suction his mouth out. He hates when they do that (his blood pressure and heart rate and BIS go way up) and always gets feisty. While she was brushing his teeth, he opened his eye! Just a tiny bit on the left eye at first, but then his right eye started opening too. He didn’t open them really wide, but enough that you could see his iris and pupil and all, but he wasn’t focusing on anything, he just opened his eyelids. We started yelling to him to shut his eyes tightly if he could hear us, and when we did, he started fluttering his eyelids as though he was trying to shut them. Then he flared his nostrils and moved his mouth a little! We all started talking to him, telling him where he was and that he can’t move because of the medicine he’s on, just to let him know what’s going on. I can’t imagine what it’s like, starting to come around after 20 days, not knowing what’s going on and why he can’t move, and what all the beeping is and such. And he obviously can hear us, so maybe it will calm him to know what’s going on.

They’re hoping to have his temperature up to normal by tomorrow. If he doesn’t spike another fever, maybe on Tuesday they can take off the cooling vest, which will make him much more comfortable. That thing is coated on the inside with sticky goo, like an extreme post-it note, so it must feel awful for him to have it wrapped all over him.

Oh well, that’s all for now. Thank you to all who sent cards and thoughts, and thank you to those who keep him in your prayers.

Nikki

Thanks for the update Nikki. I'll continue getting updates from you every day and hopefully have some progress info about our cars for you also.

Paul is more awake today, which is great. He has his eyes open most of the time and will blink to answer when you ask something. He can wiggle his fingers and toes on command on his right side, but his left side is still weak. This will get better with time. He can even give a thumbs up with his right hand. I know he’s in pain, but they can’t give him much more than Tylenol since he’s still sedated on the Propofol, and they don’t want to give him any painkillers that will make him more out of it. Also, because he can’t express that he’s in pain, they don’t have much more to go on than his vital signs (increase in his blood pressure, heart rate, etc…) to tell how much pain he is in. Once he is off the sedation, they can give him some Percocet, but that won’t be for a bit. His breathing is more steady, not so quick and gaspy as it has been, but he will still be on the ventilator for some time, they can’t start weaning him off of that until the sedatives are all out of his system. It’s so good to see him moving around and getting more with it, but it’s so sad at the same time because I can see the frustration in his eyes as he tries to do things that he can’t yet. We tell him that it’s the medication that he is on that makes him unable to move as much as he wants to, but still, I can’t even imagine how difficult it is for him. I am doing much better now, being able to see him open his eyes and move for the first time in three weeks, but I know there’s still a long road ahead.

Gotta keep the good news coming!

Nikki

Good news indeed Nikki. I'm glad to hear that everything is coming along well. Maybe I can come by this weekend or something to come visit.

Paul got his brain drain tube out yesterday. They had it clamped since Thursday morning, and watched his ICP’s. If they went above 25 for more than 20 minutes, they were to let him drain. Well, the highest he went was 20, and that was only for a few minutes, then he was back down into the mid teens, which is awesome. Since he was like that for over a day, they decided that it was ok to remove the drain. He also got the sutures out of his head from where they had to cut it to do the last surgery.

Yesterday, they turned the settings on the ventilator down to see how much he was able to breathe on his own. They kept it on “augment mode” so that if he stopped breathing on his own, the ventilator would take over, and if he didn’t take a deep enough breath it would assist, but if he did what he needed to it would only add oxygen to the air he was breathing regularly. Paul did well with that, so this morning, they took him off the ventilator and just had him on oxygen for a few hours. He did well for a while, but then when he started coughing and getting phlegmy he started breathing quickly and more shallow. They put him back on the ventilator, but only on “augment.” They will try again tonight or tomorrow and see how he does. Apparently, this takes a while to wean someone off the ventilator, but they seemed to be impressed with his progress so far.

He’s still not moving much of his left side, pretty much only when he stretches, but this is to be expected from the pressure on the right side of his brain from the swelling that he had. All of the sedation is out of his system, they took him off the last of it on Thursday as well, but he still isn’t very active. He has his eyes open, and can move his right arm and hand, and wiggle his right toes, and he does recognize people and will look at you when you talk to him. I guess it just takes time to get him moving again. His joints are very stiff, from not moving around, as well as the fluid accumulating. When he went in he weighed 150-160lbs. Now, with all of the fluid, he’s at 194lbs. We can move his arms but his elbows are so stiff, they don’t really go any farther that a 90* angle.

Tomorrow is a month since Paul went in the hospital. It’s been a very long month, and I never thought that he would still be in now. Tuesday is our 2 month wedding anniversary. The nurses tell him that since he missed our one month anniversary, he has to get better for this one. I know it will be a while before he can talk, he can’t talk with the trach tube in and it will be in probably almost until he gets out of the hospital, but hopefully by Tuesday he will be able to mouth words to us. He did look me in the eyes and squeeze my hand and raise his eyebrows when I told him that I love him, so I know he understands and remembers me, which is a great relief.

Nikki

good to hear he's getting better. Hope he's back on his feet soon.

Hey Nikki,

Sorry to hear that it's taking so long for Paul to recover. At the same time, I'm glad to hear that he's making such good progress. Unfortunately, I won't be able to visit this weekend, but maybe sometime during the week I can. I'm going to ask my parents how long my sister was in the hospital for because it was so long ago that I really can't remember.

I hope you get some good news for your 2 month anniversary. I'll try to give you a call soon and see how everything is going.

I’m very happy to say that Paul is doing great! He’s quite alert, and although he can’t talk because of the trach, he is starting to mouth words. He can move all of his appendages, and is getting better using his hands. He still can’t grab small things, but he can scratch his nose now, and hold on to the bed rail. He’s been breathing on his own for almost two days now, but he’s still getting oxygen through the cuff. He will have to have the trach tube in for a while yet, at least a month until they know for sure that his airway is healed and he can breathe room air and not have any problems. They can deflate it so he can swallow without aspirating, but that won’t be for a while yet. The peg tube they say will have to stay in for maybe six months to a year, I’m not sure why.

They did another angiogram yesterday to try to get a better picture of the AVM. I haven’t yet spoken to the brain surgeon, but the doctor who did the angiogram said that it looks like Paul has a fistula. I haven’t done much research on fistulas, but I believe that they are more rare to occur. I’m not sure of the treatment options yet, I’ll have to talk to Dr. Wong and look into it.

Paul got his helmet today, so later this afternoon, the physical therapy people are coming in and going to try to get him out of bed. He’s been trying to escape, we’ve had to keep the side rails up or else he puts his legs over the side and tries to pull himself up. He hasn’t been allowed up because of his head, but with the helmet, he is. He’s very weak, after a week or so of being bed confined a person starts losing muscle mass. He’s been bed confined for over a month, so all of his muscles are weakened. It’s like if you have a cast, how your arm is all shrunken and weak when you get the cast off, but it’s his whole body that is like that. He’s back to a normal weight, though, he had over 30lbs of fluid, but that’s gone now.

If everything keeps going well, they are hoping that he will move over to Good Shepherd (the rehab facility) maybe Monday. He is still sharp mentally, but he needs help doing physical tasks. Hopefully once he is able to get up and move around and so something productive, he won’t be so frustrated. It’s so sad to see him want so badly to do something and not be able to, then he gets angry about not being able to do it, or needing help to do it. We’ll see how it goes.

Nikki

Well, as long as the paperwork goes through, and there’s a room open, Paul should be going over to Good Shepherd tomorrow! He’s been able to sit up by himself, and stand with some help. Two days ago, he was allowed to sit in the chair, but could barely hold his head up on his own. Today, not only can he hold his head up, but with me on one side, and the Physical therapy lady on the other side, he was able to walk from his bed, to the hall, and back again. He’s getting his arm strength back quickly, his legs will take a little more time, because his balance is a little off as well, and it’s hard for him to strengthen his legs on his own when he doesn’t have good balance.

Paul did have some seizures the other night, but they have him on two kinds of anti-seizure medication now, and he hasn’t had any since. They were keeping an eye on him, and didn’t want to send him to rehab if he was still having them, but it was only that one night that it occurred. They say that it’s not uncommon for a neuro patient to have seizures, but especially since his AVM is near the motor strip, they are not too concerned. They did an EEG and another CT scan, and nothing was out of the ordinary, so they are not too concerned as of now.

Last night, Paul got a Passy-Muir valve on his trach. The valve allows for him to inhale though the trach tube, but exhale through his nose and mouth. When the valve is on, he can cough through his mouth, and he is also able to speak. His voice is raspy and quiet, but he can still speak, and do so clearly. I heard his voice last night for the first time since the morning of April 1st. It was awesome!

He’s getting back to his old self, slowly but surely. At about 6 this morning, he had the nurse wake me up so he could kick me out of the recliner in his room so he could sit in it. It was a sacrifice I was more than willing to make, it’s good to be getting him back.

Nikki

Yesterday, they moved Paul over to Good Shepherd for Rehab. He had to go to the main one, in town, because they are the only inpatient one with a neuro unit. He’s doing well, but he gets frustrated very easily because he wants to do thing that he is unable to do as of yet. I feel like such a bad guy when I tell him that he can’t get out of bed by himself, and he gets quite irate about that, but it’s for his own good. He is getting better with his upper body strength, but his legs are still too weak for him to stand on alone. This will get better with time, they have a good program there. Unfortunately, I'm not allowed to stay there with him since he's not in a private room. I've stayed with him since he went in back in March, and it's really hard to have to leave him alone at night.


When Paul got to Good Shepherd, they weighed him in at 133 lbs. Paul was about 155 or so when he went in the hospital, ballooned up to 194 from the fluids, but now that he’s not swollen anymore and with the muscle atrophy, he weighs not much more than I do. For a guy who’s 5’11”, 133lbs is pretty thin. He never was a big guy, but still…

Yesterday morning, still at LVH, the PT people came in and helped Paul to walk. He walked out of his room, and down the hall a little bit, then turned around and walked back. The whole way, he had the nurses cheering him on. The whole nursing staff loved him there. They would always pop in to see how he was doing, and just to say hello to him, and congratulate him on every accomplishment. It’s funny how his personality comes through, even when he was in the coma, they could tell what a good guy he is and treated him like their own. They made us promise to come back to visit when he gets out of Good Shepherd, which we definitely will.

Cory, at Good Shepherd, downsized Paul’s trach tube yesterday. He also capped it, which makes Paul breathe through his nose or mouth, not through the tube, and he breathes room air. This is great because if Paul continues to be able to breathe regular air without added oxygen, and is still able to cough properly through his mouth, they can remove the trach tube. They’re testing him for swallowing ability today, and possibly starting him on liquid or soft foods, but once he gets the trach out, he can eat a regular diet provided that he can swallow it.

They’re doing all of the evaluations on what Paul is able to do today, then they can work out a rehab program from there. They were very impressed with what he is able to do so far, and the little tests (memory, spatial perception, coordination) he did awesome on yesterday. They will do more comprehensive ones today. Paul is talking up a storm now that his trach is capped, but sometimes he doesn’t have the nicest things to say. I can’t blame him, if I was in his place I’m sure that most of what I say would have to be bleeped as well.

I’ll keep you posted on his progress, and when I find out what his schedule and visitation times are.

Nikki

Nikki

It was amazing to hear how much progress he made in such a short period of time. At this rate, he should be outta there and back home in no time. I could imagine that Paul would probably think, "Well I have a form of a helmet, might as well play football." I am just as determined as he is.

I will try to come visit again this weekend. I'll keep in touch with you.

Paul is doing better and better every day. This afternoon, they had him walking forwards and backwards with the parallel bars, and he was walking for a while before he had to take a rest. They have to wrap his left ankle, though, because of how weak it is, but it's getting stronger. Paul is able to get from his bed to the wheelchair and back again by himself now, and can stand for a minute in between, but still needs help doing other things that he feels he should be able to do by himself, which irritates him greatly. He's very sharp, making complex sentences, and joking around with the doctors and nurses, telling them all about being a database administrator and taking apart transmissions and just showing off in general. His voice is even getting more animated, it's been kind of monotonous, but slowly coming back. It's good to see he's getting back to himself. Paul's dexterity is coming back as well- he can write, and button his pants, and dial the phone and such. Very exciting! They give him a driving course/test before he leaves to make sure that he is ok behind the wheel. I can just see him going to the track and being like, "Alright I'm ready, I've got my helmet!" Aaah, the little things to look forward to...

I can picture it now.....doctor in the passanger seat, "ok now, just go up to that stop sign and make a left." Paul just floors it and runs a 14sec 1/4 mile in their toyota corolla testcar. Haha, I deffinately have to find some time to come visit again. I think I might be able to come by on Friday.

Paul is coming home tomorrow!!!
They were talking about letting him come home maybe on Thursday, but he’s doing so well, Dr. Kim okayed him to come home tomorrow! Today, Tracy (the Physical Therapist,) Paul, and I went for a walk. We walked all around the unit, down the stairs to the third floor, then took the elevator to the first floor. After that we walked up a little hill in the grass, up some stairs into the adjacent building, and took the elevator there to the top floor where his outpatient rehab will be. Then, we came down to the ground floor again, walked down a flight of stairs, across the alleyway, and took the elevator up to his floor and walked back to his room. Paul did all this without a cane or having his ankle wrapped or anything!!! When he comes home, he still needs supervision, and he’s not allowed to cook by himself or anything like that, but he is comfortable doing the stairs, and they feel that he shouldn’t have any problems, as long as he is safe about things and doesn’t trip over the cats.

Paul still has outpatient therapy several days a week, I’m not sure how often and what days, they will set that up tomorrow or Thursday. I will still keep you all updated on his progress. He can’t drive for a while, but I can drive him around in the meantime, we should have some sort of get together for him after he gets readjusted.

Thank you to everyone whose prayers and support helped to bring Paul along. He’s a strong guy, and very willful, but I know that he appreciates everyone being so supportive and caring. He commented today to me about how he never realized that there were so many people who cared about him. It really makes a difference.

I am pleased to update everyone and tell you guys that Paul is doing great (based on my visits and convos).

He's scheduled to get the GAMMA Knife next Monday, it radiates the AVM tissue. After that it's MRI's and Angiograms regularly and within 2 or 3 years, the AVM should be totally gone.