Did you save room for dessert?

Many, O Lord my God, are the wonders you have done...were I to speak and tell of them, they would be too many to declare. Psalm 40:5

Saturday was pretty much a non-stop praise party! Dennis' cousin Dawn arrived early (yes Scott, armed with her famous sweet tea and peanut brittle) and I'm not certain who was happier to see who, Dennis-Dawn, Dawn-Dennis or me watching them both but regardless we shared a day of acknowledging how our mighty God's hand has moved! A variety of doctors, nurses, therapists and staff popped in to say hi to Dennis as word has spread about his miraculous recovery. Courtney, Quincy, Brenda, Gabby, Marcus-Lucas and Elena joined in hearing Dennis now communicate by way of our temporary best friend, the Passy Muir. There are just so many sweet, sweet stories, along with a few comical ones, they go on and on and on. In speaking with one of the respiratory therapists she commented on how "clinically" this is so incredible, and how inspiring to those in the medical profession to witness such a story. From March 20th to present Dennis' story clearly demonstrates that only God, our maker determines our final breath.

Dennis has successfully been off the ventilator for two days and can wear the Passy whenever he wants other than when sleeping! He continues to identify pain in his right hand with a consistent grimace whenever his 5th digit (pinky finger) is even slightly touched. An x-ray did not reveal breakage so further plans are being made to evaluate it. He continues to need Potassium but has progressed with the tube feeding and a swallow study should occur soon with the hopes of beginning some pureed foods (he's really wanting to chug down a big gulp or route 44 size drink.).

The evening hours were a far cry from Friday night. Dennis peacefully slept the majority of hours between midnight and eight with the exception of 3 short times . There were no jerking movements of the arms and legs, shifting or restlessness, attempts to pull on wires or tubing, or extreme bouts of coughing. I could only praise God as I sat beside him praying for this to continue, and thank each and every one of you that have been praying, your prayers are making a difference and they are being answered! Our night was not without a little humor, as Dennis' nurse Freda teased him about the pink nail file I was using on his toe nails (they were borderline becoming weapons) and that he might wake up with pink nail polish and his respiratory therapist Lisa told him he better be careful touching the buttons on the side of the bed, especially the third one because it would eject him out the window, such fun to see his huge grin again and a bit of a chuckle attempting to escape through his speaking valve. I can't stop asking, who I am that God should allow me to witness all these marvelous happenings. 

During his next awake time I was able to play an Easter message for Dennis that Tricia had sent and watch him glow. I then asked him if he would like to hear some of the blogs Scott had written. I asked if he would prefer the most recent or to start at the beginning and he choose the beginning. For all of you who left comments, he was truly touched as I read your remarks and names. After each entry I checked to see if he wanted to continue and he would say yes. When we had completed several his eyes began to show signs that he might be able to dose off again. Following another hour and half rest we were nearing morn and choose that awake time to talk about Easter and the resurrection of Jesus and pray together. It was certainly a different sunrise service however the most meaningful one I have experienced. Dennis once again returned to a peaceful nap prior to Chris's arrival following work which briefly proceeded my departure for the airport.

This blogger shall now return this space to its' originator but before doing so would like to share how my heart has been enlarged by the incredible care, commitment, constant advocating and being a voice for Dennis when he couldn't speak, such immense love that Chris has showered upon Dennis. She has been our Esther, " for such a time as this."

I also must put a plug in for the St. Joe ICU respiratory team. For those of you unfamiliar with the old T.V. series Charlie's Angels, good search it, and know those angels pale in comparison to Dennis's Angels - Kristi, Lori, and Lisa! Many doctors and very special nurses have been the hands and feet of Jesus for which we shall eternally be grateful for.

Christ is Risen by Matt Maher

http://www.youtube.com/watch?v=E2KNvuscKRA

NEWS FLASH.......Dennis was able to begin eating by mouth, not the pizza he was wishing for but he is one step closer!!!!!!!

Ok Simmer down folks, I’m still here. I believe that the mystery blogger did a great job (thanks auntie). I also think she realized that the blog a little more difficult to write than one would think. She was a little late on the deadlines, but other than that she did lovely. Because of her late assignment some great things have happened since then. I called Chris on Easter to see how things were going (yes I do actually call her at times) and much to my surprise a heard a deep “hello” on the other end of the phone.  It was Dad, I think I was a little overjoyed and probably squealed like a girl, but I was happy to talk to him. He sounded great, and I could understand mostly every word he was saying. I asked him if he was feeling ok and he responded with a “no.” I was surprised by that, and as I dug deeper he told me his hand hurt pretty bad. I’m not really sure what’s going on with it, but I’m sure he fell on it initially and maybe tore some ligaments or it just hurts from being poked and prodded so much. I told him again that he’s doing great, and he’s making me proud with how hard he’s working. I’ve been amazed at the progress he’s made, and he responded again with a “I’m trying.”  I also had to remind him that he’s doing much better since I left, so he had to know Chris wouldn’t take care of him like I did.  We talked about Easter dinner with the family and Jeff at one of mine and my dad’s favorite restaurant in Cleveland. It’s a Brazilian steakhouse where they bring 16 different kinds of meat to your table and of course it’s all you can eat.  I told him that Jeff eats like a girl, and he needed to come up and show him how to eat and he responded with a simple “ya, I’ll show him how.” We also told him that he needs to come up because we’re getting playoff tickets for the Indians since they’re starting their season off so well.

Yesterday Dad did great, he finally moved out of ICU after 37 days! It’s been a long road, but miracles have happened and he has been fighting like a champ. I told dad that he needs to be careful moving to another unit, because I need to come down and flirt with all the nurses again so that they’ll take extra special care of him. There is talk about taking out his trach if he continues to do so well. He has been breathing on his own for quite a few days and he even ate a good breakfast today. His food is pureed and his drinks are nectar thick. It basically is food thrown in a blender with water added and his drinks are just a little thicker so that he can swallow it easier for the time being. He had cream of wheat, apple sauce, mystery meat, biscuits and gravy for breakfast.  I’m hoping it’s better than that food I ate in the cafeteria when I was there, because it really didn’t even smell like something I wanted to eat. And I’m sure it looks the same pureed as it did normal.

And now for your host of (insert catchy game show name)....

Good Friday.  Sitting here bedside to Dennis.  Where to begin.  You will no doubt quickly come to realize this is not Scott writing this entry - primarily due to the lack of quick wit, and secondary by the end it will occur to you there has been no ripping on Chris and that clearly is not Scott's style.

   First let's address disclaimers:

    English teachers, majors, or generally proper speaking people, etc.  Please accept my early apology for grammar, spelling, presentation and view this only on the basis of information to update you from the land of ICU.
    And more importantly, the views represented tonight may or may not reflect the opinions of the originator of this blogspot, voiding him of any responsibility or accountability of backlashes from the followers.

So...let's roll. Dennis currently is resting well, as he deserves to be, he has put in quite a day.  As Scott told you yesterday there has been the welcomed addition of a speaking valve.  For you internet surfers, you can google (or rather let me put in a plug for usingwww.goodsearch.com for your search engine and identify Shepherd's Ministries Union Grove, Wisconsin as your charity and they will receive a penny every time you search and Dennis will be thrilled that you not only are keeping up with him but are helping a very worthy cause in doing so) the Passy-Muir Tracheostomy & Ventilator Swallowing and Speaking Valves.  This wonderful little round purple gizmo reminds me of a kazoo- with just the right amount of air exerted, delightful sounds occur.  Today the respiratory therapist had him wear it twice.  The first time to talk with the Doc to whom he said thank you (even minding his manners in these circumstances) and the second time Chris had him make phone calls.  Yesterday he talked to Tricia so the first call out today went to Scott.   Chris was getting Scott on the phone and in doing so she said something like hey babe your dad wants to talk to you, to which Dennis furrowed his eyebrows and pursed his lips and then responded "BABE, that's me" with a quizzical look like who is on that phone that she is calling babe and making certain we were clear that term of endearment belonged to him (which at this point in the story I can assure you if Scott were writing he would have an over the top remark). I tried to capture the call on a phone video to send to Scott so he could see his Dad's expressions as he talked with him but there is no way even if it were crystal clear that it would portray the happiness in this room.  What a blessing to be witnessing!  Following that call Chris had Dennis talk with Courtney, Gigi, Grandma and Pa.   Plans for Skype sessions are in the rough!
    The respiratory therapist played music to our ears as she described the plan to increase the length of time and sessions with the valve and later on Dennis must have decided he too was going to go with the music theme and do a little conducting but we'll get to that in a moment.
     A tad of physical therapy in the afternoon, breathing treatment, routine checks, and lots of TLC passed the afternoon.  Change of shifts and Chris was off to work 1 floor below.  Dennis took a two hour power nap  9 to 11 following which he decided to pull an all nighter!  I reminded him we were long past those stereotypical college kid hours but that didn't seem to phase him so the games began.  The speaking valve was out so it was lip reading and sign language along with a letter board that he would attempt to identify letters, our version of Wheel of Fortune, but he evidently was wishing Chris was playing the role of Vanna rather than me because he spelled out "love Chris".   We then tried a dry erase marker on a board, (orange marker, a fave color) to write Chris a love letter ( I know this is nauseating you Scott and you probably are about to hit the delete button) but not to worry it just ended up with a few scribbly scrolly markings that only  I can identify.  Under the false impression that I might actually persuade Dennis to sleep a little he began our next game that we lovingly later referred to as Dancing with the Sheets, our version of Dancing with the Stars (for you Snookie.).  Dennis fidgets with his hands a lot and in attempts to keep them off the tubes and wires I would give him things to hold, a stuffed moondog (Cleveland cavaliers mascot )wannabe, Ohio State Buckeye keychain, but this time he was liking his top sheet.  He did the wave with it, rendition of the Chicken dance with both arms going, some moves that looked like "wax on, wax off" from the original Karate Kid, gestures of shooting hoops and coaching the game plans, and for a grand finale he conducted the St. Joseph Orchestra its first performance of the ICU Overture.   When I told Dennis he most likely had put in the equivalent of 4 occupational therapy sessions and  5 physical therapy sessions, well maybe only 4 in Scott's book (keep that bar raised high) we finally made a pact to nap - at 5:20 a.m., (6:20 eastern time):

Random St. Joe's fact:  ICU X-ray's are scheduled at 2:00 a.m.

Tune in Sunday or Monday for the Saturday Night Late Edition.

It's a small world after all..... With a Giant God and a great Miracle

I feel as if I’ve been having some sort of withdrawal from blog writing. Although it was taxing at times and definitely not that good, it had become routine and sort of therapeutic for me. Since my return home, I’ve wanted to journey back and be there every day again. It hasn’t been an easy transition, but my busy schedule and lack of sleep has helped make it a little easier. I’ve also been meaning to write more since my travels because I have a few stories that would be interesting.

My last night in the hospital was one of the more exciting ones. I’m not sure if it was because I was wearing scrubs, a stethoscope and a pager while pretending to be a doctor or if it was because we had an all star nurse and dad had a great night. I started to see a change in dad that day when he started to respond a little more and when the nurse asked him to rub his lips together after she put on a hospital form of chap stick (which looks like nothing more than Vaseline in a tube), he did! He was sleeping really well each time I went to check on him and I think the nurse was just as excited as I was to see him doing so well. I give her a lot of the credit (to make her feel good of course) but I could tell he was starting to turn around. They were a little overstaffed in the ICU so she was able to give one on one care which I was pretty happy about. I would always ask the nurses how many high priority patients there were in the ICU and I especially liked the ones who responded with the appropriate answer of one, while they were looking at dad.

Chris was working and since dad was doing so well I decided to pretend to be doctor and walk around. It’s amazing to see how many more people say hello to you when you look like a doctor rather than just a family member. I was acting as if I was a specialist from out of town who was there for educational purposes. I even went into a room to shut off a call bell! I continued to check on dad periodically throughout the night until about 5 am. Each time I had a nice chat with the nurse who was still on cloud nine and very excited about his progress.

I decided to finally go to bed a get a little rest that night. I slept for 3 hours or so and then I journeyed over to my grandparents hotel room to pack up and take a shower. I had noticed during the initial stages I thought I forgot my toothbrush, so I had to buy a new one and I kept it at the hotel. As I get out of the shower and get ready to brush my teeth, but I realize my toothbrush isn’t around. I ask my grandma about it and she looks at me as if she was confused. It soon comes out that she thought it was her toothbrush and that apparently she’s been using it for the entire trip. I was kind of grossed out, but I think I was really just too tired to care that much about it. I made sure I used really hot water that morning.

We get back to the hospital to say our goodbyes and dad is still sleeping pretty comfortably. It wasn’t easy to leave, but we were in a time crunch and knowing that he had been doing better the day before really helped out. We make it to the airport and my grandpa tells me they aren’t going to sit next to me, because a “cute” girl might sit next to me instead. Indeed he was right, and I did get to sit next to a cute girl. I warned her that my grandfather would say something about her sitting next to me and no sooner than I said that, he turned around and yelled “lucky.. lucky...” It made both of us laugh and as we get off of the plane I get thrown under the bus saying that I didn’t stop talking the entire flight and was a pain to sit next to.  We land in Baltimore and have a 2 hour layover and all I really remember about the airport is a that apparently they were testing fire alarms and they weren’t aware of how to turn them off. I remember hearing a overhead page saying “this is just a test” but it was an annoying long test. I’d estimate it went on for at least 15 minutes.

My next flight was a nice short one and it turns out the lady who was lucky enough to sit next to me on this round was a healthcare journalist. Of course I thought about the blog and mentioned to her that I’ve been writing about my experience in the hospital and she promised to check it out and give me some constructive criticism on it. It’s kind of strange how much it has blown up and how many people whom I don’t even know have mentioned to me how they enjoy reading it. It’s been so much easier updating the blog rather than calling a lot of different people. It reaches so many different people that it’s truly incredible. It’s kind of cool how I was able to talk to certain people over the past 4 weeks and connect through this ordeal nd strange that I can even connect through this on the airplane.

Typically whenever I’m flying i’d call my dad or even text and let him know where I landed and how the flight went. As I was walking off the plane, I caught myself taking my phone out and dialing “Dad.” I even attempted to do it again when I was sitting in the Baltimore airport. It then hit me again, that I haven’t been able to talk to dad as I have in the past. I’m not really sure how I’d handle it if I didn’t have the opportunity again. I was ready to tell dad how bumpy the landing was, and where I was going to eat in the airport. It’s the little things throughout your day that you don’t realize you have until something is in the way of that routine. That’s when you really begin to miss it.

I’m thankful I have so many amazing friends willing to give their time to help me out, I’ve had friends come and clean out the sour milk and food from my fridge, do laundry I had piled up (thanks jeff) and ones that have even picked me up from the airport. As I got home I sat and talked to John and Carla (my ride) a little more and once they left I decided I should probably eat something.  Although I was still pretty tired, I made a little food and sat on the couch to eat it. Next thing I know I’m waking up in the middle of the night with my food in my face untouched. I decided there was no use in eating it and continued to go to lay in bed while not worry about waking up at any particular time. I eventually wake up around noon and immediately think of my chiropractor friend after I stretch. I haven’t really been used to stretching out when I sleep, and in some form or another my back was reminded me of that.

I was welcomed back to Erie by snow, yes snow. After I was getting up and ready to do my task for the day, I get ready to walk outside and see snow. Seriously, snow in April, how ridiculous is that. Courtney (step sister) calls me later in the day and tells me dad is responding more and he’s even smiling when she was talking to him. Leery that he’d be smiling when she was talking to him, I was convinced he was still a little sedated to recognize her. The next morning when doctor walked in the room and introduced himself dad reached up to shake his hand. The doctor was ecstatic and gave two thumbs up on his progress. Apparently throughout the day dad was trying to pull out his tubes and was getting very anxious together.  He was excited trying to give Chris hugs and was even playing with her hair and smacking his lips making kissing faces. The thing I immediately thought about was either I should have left sooner if he’s doing this well or I’m glad that I got out just in time so I don’t have to witness touchy feely stuff.

Yesterday dad went to surgery and they put in a peg tube. I asked Chris who was with her in the waiting room and she told me that Quincy was there.  I was surprised by this because I assumed that he was getting ready for his weekly American idol party but apparently someone else took over the task of frosting the cupcakes this week. I’m sure he was hoping the surgery would get done soon so that he could go home and watch it live.  The peg tube is placed in his stomach so he can get more nutrition and it’s not that annoying tube that goes down your nose. I was able to talk to him on the phone a little and he is starting to sign and mouth words back to us and Chris is poorly attempting to translate. Most of his medicines have been taken off and he has been doing really well. He’s still in ICU and we aren’t sure when he will come out of it, but they aren’t going to rush anything to get him out of there.

Today has been even better than the last couple. Unfortunately I missed the call when I was at work, but my dad was able to talk a little today. A speech therapist came into today and put in a valve so that he could talk a little. It’s not in all of the time, but they’re going work their way up on wearing time. I was excited to hear that he was able to talk and is doing so much better. He was able to talk my sister and tell her he loved her.  I’m sure it was such a relief and encouragement to hear his voice. I’m kind of scared in a way to hear from him, because he might tell me that he’s understood everything I told him when he was sedated and I might get yelled at. I’ll just have to keep my fingers crossed for a “hey bud.” Look for another update coming in the next couple days from the guest writer, I have no doubt it will be a good one. Continue to pray for improvement. We’ve seen miracles so far and he’s been doing great. 

Warning: Not recommended or small children.

Last night was without a doubt a test of self control and patience. The night was dragging and I was having a hard time keeping dad calm. I was able to do it for 5-10 minutes and then he’d start back up again, finally he started to rest for a little longer and because I’m very familiar with the staff who had him and confident they’d come get me if needed, I decided to rest my eyeballs around 1:30. The waiting room was pretty full with 5 people sleeping and only one lawnmower (which was impressively loud). I fall asleep and shortly wake up to a group coming into the waiting room and talking. I’m used to many people coming in and out throughout the night but most are very courteous and observant that people are trying to get some sleep so they stay as quiet as possible. This was not the case for this family. They’re talking with their outside/mid day voice and consistently complaining. I look up and give a slight death glare and see that everyone else in the waiting room was awake as well and doing the same thing. We try to fall back asleep and then one of the family members decides to sit on the chair next to me and call someone while another family member across the room was calling what sounded to be like friends. I soon hear the words inmate and detained next to me and I perk up. Apparently there was an inmate from a prison who was beaten up by someone and sent to the hospital without notifying the family. They then decided to turn the tv on and increase the volume so they could even hear it upstairs. I almost didn’t care if I had the remote anymore because I was about to throw it across the room at the loudest accomplice. Of course I’d be upset as well, but I think I’d have the courtesy of talking in the hall way or being a little quieter when 6 people are sleeping. Granted I was lacking sleep so it may have increased my irritability but I was considering how much bail would be for assault because I strongly tossed the idea of throwing them out the window. I texted Chris to warn her that if there is a code 13 (hospital lingo for rowdy family members) to the waiting room, not to be alarmed. After I asked how much the bail would be set at and she said probably 1k per person, I was still comfortable with that. I just can’t believe how people don’t have enough courtesy and respect for others to at least act like they’re aware people in the same situation are trying to sleep.

I wanted to attempt to sleep a little because the opportunity arose in which I could wrestle alligators. Apparently Hot Springs has an alligator farm and it’s time for the gators (that’s what us real wildlife men call ‘em) to come out from inside and go outside into the pools. Quincy’s old basketball coach owns the farm and so he needed help moving them from inside. The gators we moved ranged from 7 – 65 years old so some of them were pretty big. We grabbed onto their tail and drug them backwards into the water. They were moving kind of slow because they are still semi-hibernating. Some were a little feisty but nothing that  scared me too much. It was definitely a cool experience and something I never thought I’d actually do, so I’m glad I can now call myself THE alligator man. As I was leaving I began to think about how I could add my experience with the gators and in the south together and the best idea I could think of was crocodile skin cowboy boots. I’m on the lookout for them, don’t worry. After wrestling we decided we needed a good hearty breakfast so a McDonalds trip was in order.

I get back and begin the rest of the day in the room. Dad is a little restless which is probably mostly due to Chris being in the room elevating his blood pressure. I took over and finally calmed him down and he slept well for a couple of hours. They wanted to take out the feeding tube from his nose and put it in his mouth, but he didn’t tolerate it well so they just switched nostrils. Dad has inflamed sinuses which may be part of the reason for the temperatures. He wasn’t really weaned off of the medicine too much today and he stayed pretty stable. The thing that they’re mainly working on at this point is getting the powerful sedative out of his system. The fetanyl is stored in fats and can last in your system for quite a while. He does seem more alert today and it’s good to see. He has started to open his eyes when you ask him to and he’s even started to squeeze my hand again. I started to ask him questions and told him to squeeze my hand for a yes. I began to ask him if he was in pain, and if he’s squeeze I’d ask where. He was able to squeeze and tell me a few different things that hurt, and that he was having trouble breathing once. I also asked him if he wanted to roll to the left or right and he scrunched up his face as if he was confused. I asked him if he wanted to roll left and he squeezed yes. I then followed up asking if he wanted to roll right and he didn’t respond. The responses to me were very appropriate but it could just be involuntary or non purposeful squeezes.

I know from experience not to get my hopes to high and to expect the roller coaster ride. It’s going to be tough to leave tomorrow seeing the gains that I saw today. It was welcome to see these improvements but then again I don’t want to get too hopeful and have to cope with the downhill aspect of the ride. Dad has started to become more restless throughout the afternoon and it appears to me as if it’s some sort of hallucination from the drugs. I try to picture what he’s thinking as he’s moving around and try to match the motions with a story. One story I thought about was him driving the bus, he put his hand up as if he was shielding the sun, and then would pump his right foot up and down as if he was pressing the gas. Another story I thought about was that he was a karate kid. He would kick his legs and flail his arms as if he was attacking someone and he got a few good kicks on me here and there. Myself, along with the nurses have been surprised how strong he is. He’s been resisting and kicking pretty well and still has lots of strength. I can’t wait to come back and see the improvements he’s made.

Many people have asked if Chris will keep up with the blog in my absence, my initial response was a laugh, and then my secondary response kicked in and I come to the conclusion that I’ve set such a high standard for this, that no one can come remotely close to making this blog in a way I approve. I feel like letting her take over the blog would be like giving a toddler matches in a pile of dry leaves, it’s just not a smart idea. No really all kidding aside,  I will try and keep everyone updated as much as I can. I won’t have the first hand information and Chris will be busy enough as it is, I doubt that she will have time to write. I do have a mystery guest spot lined up for this weekend and I have no doubt it will be a stellar one. I plan on being back within a couple weeks and will give my input on a new unit if we’re out of ICU. I am going to plan on keeping the blog a secret this time so it won’t hinder my writing style and I’m not afraid of what everyone will think about it. Please pray for improvements and him to continue to wean off the medicine with no complications. 

Attn: PETA - No cows were harmed in the making of the blog

There has been word all day about an upcoming storm, the clouds were gray and it felt as if the rain was coming. The TV was set to the news station, and the weather man with to much hair product (like I should talk) was on for hours, there were weather advisors out all over the state as the storm was approaching. I put my chairs together, curl up and get ready to fall asleep for the night to the sound of the only other occupant in the room making motorcycle noises. I close my eyes and doze off when I’m awakened by a lady on the phone complaining that she can’t get the window closed, she had closed all the blinds and is asking my houseguest to move away from the window. Apparently there is a “level 1 tango” which is hospital code for a tornado warning in the area. The sound of hail (marble sized), rain, and wind was pelting the window along with the flashes of lightning and the crackling of thunder. I begin to think to myself is this the place I really want to be if a tornado hits? And then I got excited that I could potentially see a cow flying by if I looked out the window, if it really did come.  The thoughts didn’t last long as I was watching the spokes person for suave hair products point out the rainbow of colors on the TV I dozed back off. It was then the nurse wakes me up. She told me dad has been pretty restless for the past 20 minutes and wanted to see if I could calm him down.

At first I was confused on who it was that actually woke me up, but I quickly gathered my thoughts and came into the room, dad was all over the bed. It was as bad as I’ve seen in awhile, and I’m so thankful she was willing to come get me. This is what I’m here for and it was nice that she was willing to let me help. I came in and respiratory was in monitoring his breathing and trying to help. We eventually got him to calm down and I sit down for 3-4 minutes when I see the x-ray guy push his cart to the door and I had to demonstrate a little self control not to go block the door. They took the x-ray even though the nurse and I were perturbed. Of course he became riled up again and it took a little longer to calm him down this time. Respiratory came in again and bumped up his oxygen and it seemed to have almost an immediate effect. He fell asleep again and appeared to be resting comfortably. Today was the first time in awhile I’ve seen some expression on his face. He had an expression on his forehead again as if he was hurting or confused. Although I hate seeing that, it was welcome to see some sort of expression come back. It’s been over 2 weeks since I’ve seen that last. I think seeing it makes it harder for me to go home for awhile, because I know I need to be here.

The staff tonight has been fantastic, the communication and care has been top notch. The nurse was interested in dad and what he did for living. I always enjoy listening to my patients and their stories on where they work(ed) and what their background is. It gives you such a better understanding for the patient and type of person they are. As soon as I told her that he now owns a business after 30 something years in education she shot off the name of his store and you could see her recounting the times she had talk to him. She went on to say that her and her husband have a ministry in which they help get furniture and mainly bedding for underprivileged kids and how dad and been great in talking and helping her. She recounted a story in which he had told her about a coffee table. He had the opportunity to buy it, and he really didn’t need it for the store, but felt a need. He took  it in and within a couple of days a lady came in and was crying near the table. He found out she had been struggling recently and fell in love with the table but couldn’t afford it. The nurse then told me, she didn’t know how much it was, or how much she paid for it, but she did know that she could afford it that day, and went home with a coffee table. It was touching to see the smile and sparkle in her eye and she was recounting the impression that dad had made on her. They had just talked a handful of times, but he made a lasting impression.  It’s always amazing to hear these stories from people whom I’ve never met before and the different ways dad has touched them.

It’s been a long night, dad has been giving me a workout. I think he heard that I gained some weight and I’m starting to look hefty, so he felt the need to give me a workout. Different churches bring meals for the ICU families each weekday for lunch, we’ve been getting lots of pizza and lots of sandwiches and of course I’ve been eating whatever I can. I’m thankful that people are willing to spend some time and money and help us out with meals. It makes things easier when you don’t have to worry about going out and getting something or going down to the cafeteria to get some “food.” I would assume that when you would approach a cafeteria or a kitchen you would smell the food that they were cooking, but it hasn’t been the case, so I haven’t been a big fan of eating there. Since I’m not a big fan of the cafeteria food, I had the opportunity to eat at an IHOP for the first time and it was amazing. I ate an unhealthy amount of food, but it was so good, and I can’t wait to go back and continue the feast. Who knew there were so many different kinds of syrup.

My breakfast today consisted of cheetos and a coke, it’s a breakfast of champions if I may say so myself. I also feel a little weird I haven’t really made fun of Chris in awhile. I really haven’t seen much of her recently because we’ve been alternating shifts or she is just napping when she tells me she’s doing homework. Chris is working tonight so it appears as if I have night shift again. 

I feel slightly out of the loop again because I slept from 10-3 or so, I missed all the doctors coming around and had to get my information from Chris. Since I really never pay attention to her, and am used to automatically tuning her out (kidding people… mostly). The fever has subsided throughout the day, and it’s about normal. He has had periods of restlessness and sleeping. It figures that most of the time he was sleeping today was with Chris, so I get the tough work. I was in the room for a couple hours so far and I’ve been kicked in the unmentionables a few times, and the face once so far. I think it’s just his way of getting back to me for all the things I did to him growing up.

Dads meds have decreased a little today, and the doctors have decided to leave him on this new medicine a little longer. It’s a newer medicine and we’ve read reports where it has been on as long as 11 days, but it’s only typically  on for 48 hours. I’m pretty sure that has been all the changes throughout the day. Hopefully tonight will be a restful one. 

Report: Mayor to take brief leave of absence Sunday.

Today has been a pretty good day, I don’t think dad has moved a muscle but he is on the highest dose of this new medicine that he can possibly be on. I believe I mentioned in the last blog that this medicine is really only suppose to be on for 24-48 hours, which brings into question what to do next. I think they’re trying to take it down slowly already to help ease the process tomorrow. He stayed on volume support for around another 8 hrs today and tolerated it well. He was still pretty snowed because of the drugs, but he seemed to actually be sleeping for the first time in awhile. His fever has decreased to slightly above normal, and his rash has seemed to go away. One of the fentanyl patches have been taken off and the drip is no longer on. The kidney function is back to normal, but his sodium levels are still a little elevated. One of the doctors was starting to talk about the irregularity of his CT scan and was talking about doing a lumbar puncture so that they could analyze the Spinal fluid to search for irregularities.

I have been able to tell a difference in the staff and their communication recently. It may just be because I’m starting to like the new nurse. I’m not really sure why she’s growing on me, because she doesn’t suck up but she knows her stuff, jokes around and most importantly takes good care of my dad. She’s an advocate for taking down the medicine slowly and efficiently. She’s willing to talk to the doctors and be a liaison for us. She’s good at communication and has a halfway decent and humorous personality. I feel slightly bad about terming her as a nerd although it wasn’t bad, I just didn’t know another way to describe her. She told us that they were talking about what nurse they wanted to pair with us tonight so that the care and personality will match. It think they did pretty well from what I could tell with my first interaction. I’m usually fairly good with first impressions and seeing what type of nurse they are going to be and she passed. She’s a little thing and seems to be very sweet. I’ll have to check on her a little later to see how’s she’s doing and if she’s still on my good list.

As mayor of the waiting room, I have many responsibilities to uphold. I am in charge of answering the phone (or delegating if needed), greeting new guest, and even helping set up beds. There is an older lady here with her brother-in-law who has termed me “sweet beans.” It’s kind of funny, and I have no idea why she started calling me that. She asked me what my real name was, but I told her sweet beans was fine and she has to tell everyone that story. I’m pretty sure it made her day. There has also been a guy in here, who looks like he’s fresh off the farm with the stained jeans and everything. I started talking to him yesterday and I’ve realized to never judge a book by the cover. This guy is a literary genius. He was talking to me and I was floored by the stuff he was saying. He has written three books and is talking to Hallmark about publishing some of his quotes to put on cards. To look at him I’d never in a million years have guessed he would have been so good with words, but I will admit it once and probably only once, I was wrong.  I felt bad I couldn’t talk to him any longer, but since things were going so well I had scheduled a meeting earlier in the day.

I met with some of the directors of therapy today for outpatient and inpatient. I have to leave soon to go home and take care of some things, go to a few appointments and take the test I have missed. I plan on coming back as soon as I can. I know I’ll need to work a little because it’s been winter so my money tree hasn’t grown as well indoors as it does outside. I was initially going to go to my “networking” meeting in my sweet house shoes, but I figured that wasn’t the best option. I think the best option here would be cowboy boots and a cowboy hat, and since I clearly don’t have those, I chose my sneakers. It was nice to meet the other therapist and sort of see how things worked down here. It’s a bit different, but everyone seemed great and I think it would be a good crew to do some part time work with if I stayed here for another few weeks. I’m not saying I’ll look into it more, but at least I know the option is there if I need it.

I’m planning on leaving Sunday and taking my grandparents back home as well. I’m trying to convince my grandmother that I’m only taking my grandpa with me and she has to find her own way back. Of course she knows it’s not true, but it’s fun anyways. It was tough today because I knew I wouldn’t see a couple of the nurses and staff again before I leave and we’ve developed pretty close relationships. Denise is such a sweetie and she’s a great nurse. I think she spoiled us a little too much with her personality and sucking up to me, but she has great qualities. You can really tell when someone loves their job and she is a prime example. I’ve said it before at places where I work, if you don’t enjoy your job it shows, and the patients can tell. I know for some people it’s hard to get out of a job you dislike,  but you’re not the only one miserable if you hate it, your patients will be miserable with you as well.

It’s definitely going to be hard to leave, and it’s not going to be easy not getting a first hand look and grasp on all the information. It’s both easier and harder to be here. My aunt described it perfectly today, with a roller coaster analogy. Being here is being on the ride, you experience all the emotional ups and downs throughout the day, whereas those who aren’t here are at the end of the ride watching it after the ride has stopped and you can’t get on it. The blog is a view of the coaster with the ups and downs put together so you get it all in one taste.  I enjoy having a direct input in what’s going on with his care, and talking to his healthcare providers and giving my input, and I think it’s going to be difficult when I can’t do that for awhile. I want to help as much as I can and do everything I can to help ease to process for everyone. In my absence my sweet family aunt and uncle have decided that they will come down each weekend and help so that Chris can go to work and not stress out too much about everything that’s going on.  I may even give a few guest blog spots if the opportunity arises. 

Names have been changed to protect... (myself?)

The waiting room was back to normal! I have new housemates and have decided I’m giving them a month of rent for free. I figured since I’m the CEO of the waiting room and since I have issues with sharing our remote, it’s the least I could do for them. After last night, I wish I could revoke the contract and get fines for disobeying the noise ordinances.  There was a lady in the right corner who sounded more like a clogged drain in the bathroom when she snored than anything else. A lady lying on the couch in front of me has the best story to date. She was sleeping with her rear facing us and she was out. She fell asleep early and fast. As we were sitting with our computers and talking, I started to smell something that resembled rotten eggs. I remembered that I ate an omelet for dinner the other day, so I didn’t want to mention anything. However the green cloud of smoke started the suffocate us. I soon realized it was not the smell of raw eggs but it was far worse. I can’t even describe it. I’ve had the opportunity to smell a lot of nasty things anything from sour milk, limburger cheese, cadavers, and a third world country. Mix them together and you may have something that will rival it. I actually had to get up and leave the room, and was still afraid to go back in an hour later. Anyways, thankfully the ceiling tiles we’re singed and the pleather chairs don’t seem to hold in the odor so it’s back to normal.

I woke up this morning to no one in the room, either I was incredibly tired, or they finally listened to my inside voice lecture. I woke up a few times last night and noticed Chris wasn’t in the chair next to me. She had fallen asleep 3-4 times attempting to do her homework on the computer so I assumed she had just gone to bed. When I woke up fully in the morning I text her to see how things were going, and she told me he had a fever, was restless and his oxygen was low. We have another new doctor today, and he feels the fever could be coming from what we thought was a contaminant really was an infection in the blood. They started him on a new sedation drug that is supposedly easier to wean off of than the current one. I had a few friends mention the medication to me, but last I knew the pharmacy here didn’t have it. Dad has been quiet so far today since he’s been given the new medicine. They’ve also been able to wean him more off of the fentanyl because he’s been so quiet.

Today as I was sitting in the room when the admiral (of the ICU) came in and told me she printed out the blogs and was reading them. After my heart started beating again, I asked her how many people knew about it. She told me that a lot of people (even some doctors) do and a lot of people are questioning what their nicknames are. The pressure is on now, and I have to be careful what I term them. I’m having difficulty coming up with a good word to describe the nurse we’ve had the past few days, I’ve considered; stringent, the foreman, but I think I’ve settled on, the nerd. She’s very determined and focused, which reminds me of those kids in school who have to get the straight A’s and study all the time. She’s been good at communicating with us for the most part, she tells us what she going to do, what’s she planning on doing and is good at describing what things are before we have to ask about them.  I could call her the teacher, because she is focused on making him better, but that’s a little too nice for me. Before she gets a big head, she’s not in my top 3 favorite employees yet, you have to work hard for that (sucking up goes a long way with me), it just doesn’t come easily (unless you have cookies). I was intimidated on my first impression because she told us she’s keeping him quiet and doesn’t want us to over stimulate him. She also told us that’s she’s planning on cleaning up the room and clearing some things out, so I could term her as the housekeeper, but I don’t think it’s that fitting, there is still a bit of a mess around.

The kidney doctor came in and told me that his kidney levels are all normal, and that his kidneys are looking good, but with the fever and the stuff going on, that may change. The doctor is funny, he’s very quiet and seems pretty shy, but he’s been stopping and talking to us and keeping us up to date. He’s been one that has been great at communication and keeping us updated. Today he took a little time to find out more about dad and our family. He was asking where we were from and just more about dad. It was kind of nice to see him genuinely interested. We had a nice chat and I learned more about him as well and the places he’s worked and traveled. It was pretty refreshing to see.

The Admiral came in a little later and started talking about the blog and just listening to concerns. She was great to talk to and nice to have an ear of someone who knows the situation from both sides and is truly interested and concerned about the care. We were talking more about communication and how you can be the smartest and most knowledgeable person in your class, but if you’re a terrible communicator it will make others perceive you as a bad health care provider. I’m lucky I have the best of both worlds I’m the smartest person I know and probably the best communicator you’ve ever met (that’s incredibly sarcastic if you didn’t catch it).

There has been talk about moving out of the ICU to a long term acute care unit (LTAC). He is able to go there on a vent, but he can’t go while he’s on pressors for his heart rate. We’re not really sure how the care is on the LTAC and I’m kind of nervous about it. I know the nurses and respiratory therapist will have more patients so it won’t be as close of care as what you get in the ICU. One doctor said it would be a week or so before he leaves ICU but then someone today mentioned possibly tomorrow. I think we want to find out a little more about LTAC before the move is made and see if we approve.

For those of you who know how much I love my girl scout cookies, I wanted to let you know how big of a step I took today. I shared… I know it’s hard to believe and it was hard to do, but I actually gave away 3 of them. Usually it’s one maybe two if you’re lucky, but I gave away 3!!! I had to sit down and gather myself together after the generosity. I’m pretty sure I also made our cardiac doctor feel really bad today. I was sitting in the room talking to the nephrologists (the coolest name ever) she popped her head in and asked if I’d be here for a bit because she was going to stop back in. After an hour and a half of waiting and talking to the Admiral I went to the waiting room to rest. 7 hours later I go back and see her and she apologizes immediately. Of course I give her a hard time and tell her I’ve been waiting all day and haven’t left. She tells me that she’s been incredibly busy and apologizes and I continue with my guilt trip and tell her I saw her outside and in the cafeteria taking a break today (I really didn’t). She hung her head and said I was right (I’m used to hearing it now) and that she did in fact eat there today and I caught her. I then took it a step farther, and told her I didn’t see her there because I didn’t get a chance to eat anything because I was sitting in the room all day waiting for her return. She really felt bad, and I’m not sure I fully convinced her that I was kidding about the whole thing. I think the laugh was good for all of us and made the mood in the room a little lighter.

Today was pretty good, He rested nearly the whole day. He stayed on volume support for 9-10 hours and tolerated it really well. The new medicine we tried seemed to work really well, but from all the studies I’ve read you’re really only suppose to use it 24-48 hrs. This could be to quick to fully wean off the other med, so I’m not sure what the next step will be, we’ll find out more tomorrow hopefully. 

I saw the sun!

Tuesday –

You ever have one of those neighbors who sticks a leaf blower or an old fire truck siren in your window to wake you up in the morning? Well maybe it’s just me, but I’m sure you at least have had one who mows the lawn really early or is doing some sort of work outside that wakes you up early on a Saturday or a day in which you’re trying to sleep in. Today is one of those days. There was one family in the waiting room last night until about 3 in the morning with 2 young twins that had a more than healthy set of lungs on them. After I finally fall asleep, I wake up to another family “meeting” at 7 in the morning. There was a group of 7 sitting across from my “bed” discussing how hot the water is in their house, and how many times their phones ring before the answering machine picks up. One guy was also talking about how he doesn’t like coffee, but he likes the way it smells to wake up to.  It’s not really the stuff I want to wake up to but I’m guessing it could be a lot worse.

This morning the nurse came to get us and told us the doctor was here and wanted to talk to us. This was a pleasant surprise as it hasn’t happened in a long time. We sat down and had a little family meeting with him and threw our questions and concerns out to him. He was very respectful and we worked over our disagreements and were able to get some questions answered. He reported that the infection was more than likely just a contaminant (something wasn’t fully cleaned probably) and he’s not even going to use antibiotics because it’s not in the blood. They also ordered another CT scan to see if there have been any changes. He reported that there are areas of slow perfusion in the brain which is fairly common with all the drugs he’s on. There are areas that appear to have decreased blood flow to them as well which could be due to his low blood pressure. There is nothing to be overly alarmed with at this point. It’s hard to tell what the final results are going to be like until we clear all these drugs out of his system. The doctor is hopeful and as we all know it’s not going to be an easy road.

The doctor also reported that we try and help to decrease the stimuli. He wants his room to stay fairly quiet and be careful when we touch him or try to calm him down. He said he’s easily agitated and because the effects the medicines have had on his brain, it doesn’t know how to perceive touch at times and that could be why he’s moving so often. It was hard for us today, but we tried to limit the time we were in his room. Chris, Quincy and myself all went to their house for a little while, and of course Quincy had to catch up on the American Idol he had missed, so that being the only TV I am aware of, I was forced to sit through it as welI. (It was funny watching him getting so excited over it). We (I say it like I did it, but I didn’t do anything) washed clothes so we could smell clean and fresh and just took it easy out of the hospital environment. We went to get a bite to eat with grandma and pa and then to the wonderful wal mart to get more bread and water (not really) to eat.

As we returned it was visiting hours so we went back and asked the nurse how he was doing. In passing she said they put him back on blood pressure medicine because his BP was at 60. It didn’t really click until she left, but Chris felt as if it was something she wanted to be informed of. We questioned her a little more and she reported it was 60/30 or somewhere around that.  We have the feeling that it could be due to lasix (Water pill) that they had given him. I think they gave him two units of blood by mistake yesterday when it should have been just one so that could be why he had the water pill so that he could get rid of some excess fluid.

Overall it was a fairly quiet and relaxed day for us, I’m glad we were able to sit down and clear some things up. The nurse this morning seemed to be very good at answering questions and helping us with what we needed to know. I don’t really remember if they gave us the results of the EEG. I want to say they said it looked pretty good, but I just don’t remember. I’m updated the blog at 1 am, and I’m starting to get a little sleepy so I’ll try to add the stuff I didn’t mention tonight in tomorrow’s.  Lets pray for a restful day tomorrow and that the medicines they changed will begin to help him and we can start to wean off of these drugs and the vent. 

You talking to me?

The first thing that comes to mind as I start today’s installment of “Man vs. Hospital” (thank you Sheri) is “O what a night.” Throughout the day it was fairly calm, and the nursing staff was great. We were excited to hear that Mr. Clean was back to be our night nurse, because he’s been great and we’re confident and trust him. However, last night made us worry a little. As you can tell we ask lots of questions, not overly annoying petty questions, but ones that concern us or from stuff we want to learn more about. Anyways, I wasn’t back at the time and Chris had noticed some levels on his vent had changed that we’ve been having issues with in the past.  As Chris was questioning why they had changed, and as dad was restless and squirming the nurse sternly tells her “We aren’t going to do this tonight, They’ve answered your questions all day, and we’re taking good care of him.” Surprised, Chris asked what he’s talking about, she’s been sleeping all day and thought everything was kosher (apparently not). She leaves and calls a friend to run things by and tries to calm down. One of the night supervisors then comes by and is hearing her account of the story. Meanwhile I’m in the room sitting with dad and the nurse asked if Chris is returning because he wants to apologize for losing his cool.

Chris eventually comes back in with her crew and we talk things and options over. The nurse then comes in and sincerely apologizes. You can tell he was upset about the way he acted and told Chris he was just stressed and it came out. We’re nervous that the staff doesn’t like to come into the room and see it as burden to take care of dad, because we do question things and we want to know what is going on with his care. I think it’s hard that we are fairly familiar with medical terminology, but we have no idea anything about ICU. I feel bad for families that don’t ask or don’t know anything. There is a lady we’ve met in the waiting room whose husband had a stroke and was making gains (from my understanding of how she described it) and they recently just told her, there is nothing more they could do so he’s now going up to hospice. They told her this would be the best quality of life he would have and it wouldn’t get any better. This did not set easy with me. She’s content at this point, and I don’t want to raise concern with her, because I’ve never seen him or looked at his progress, but they didn’t even attempt to take the vent off and put him on a trach.

I know I’ve been pretty frustrated over the past few days, and it’s building. The first EEG they did last week was lost and they did another one this morning. We’ve had meetings pretty much all morning to talk about our frustrations and concerns. It seems all good, we’ve been happy with the care and trusted the doctors we’ve had, we just want explanations as to why things are or aren’t being done. After our issues recently, I know the nursing staff has been talked to and now I feel they are going to try to be overly nice and kiss up which is not what I want at all. I don’t want people to fear coming into the room just because they know we’re going to bring up questions. We’ve been here for over 3 weeks straight and have had at least 15 different nurses. It’s hard for them to see the changes like we’re able to notice. If you watch something for 3 weeks you’re bound to learn more about it than you are if you are in and out every week.

I’m not one to enjoy confrontation so I’m always sitting on my hands and holding back. I don’t like to say things or complain about things (I know you don’t believe it). Chris on the other hand isn’t afraid of anything. It makes me think of the older ladies under 5 ft who aren’t afraid of anything or anybody.  Chris kind of reminds me of one those ladies. She’s not afraid to voice her opinion or mention anything. It scares me at times, but I think it’s been a good thing. She may come across as if she’s mad at you or more stern than you’d like, but she just wants the best for my dad. I think it’s a blessing and curse that she works at this hospital. She knows a lot about the way things are run, she has a lot of connections because she’s been doing this for 80 years, but then how familiar is too familiar. She’s big on researching, which is never a bad thing, but I think her tiny 5’2” frame and her voiced opinions is highly intimidating to many, including doctors.

Dad has been restless most of day. He tried a couple different medicines this weekend that seemed to work pretty well, but he’s no longer on those. The reasoning I received from a nurse was because it can affect part of the heart rhythm, so they don’t want to keep giving it. I’m not sure how true it is, but it’s all I have. They have him on the same meds he’s been on for the past week so I’m expecting him to still be quite restless. The kidney doctor who still comes around reported that he had positive cultures in his blood which could mean he is septic. Sepsis is caused by the body fighting a severe infection that has spread via the bloodstream. It could result in a low blood pressure leading to poor circulation and lack of perfusion of vital tissues and organs. They ordered more blood samples to test for this and I haven’t heard anything back yet. The EEG results were lost so they had to do another one this morning. I’ve heard it can take 3-5 days to get the results again.

Unfortunately we just got word that Barb’s, my waiting room friend who I asked everyone to pray for last week, husband died. He was the one who they transferred to hospice because there was nothing else they could do. She came down stairs to tell us, and she seemed to be coping fairly well with it. I feel terrible for her, and I wish there was something that I could have done for her, but it’s a fine line having her seek other opinions or agreeing with their call without ever hearing the information from the source. I can’t imagine being in that situation and struggle with the decision she had to.

Dad has opened his eyes more today than I have seen in a while. He still hasn’t been focusing and isn’t looking in the direction we’re talking. We were able to relax him a little today but only for short periods of time in the morning. This afternoon I haven’t been able to settle him down at all, I think I’m losing the touch. I feel bad the last few updates have been more about frustration than anything. I think that weeks in the hospital can do it to you. Through all of this stuff we’ve been through, we’ve definitely seen/been on the other side of healthcare. It’s going to make me think much more about my communication with patients and family members. Hopefully tonight will be peaceful for him. He still has an allergic reaction to some medicine, but it does look slightly better. Overall it seems as if we’re still at the same point we were this time last week with really no changes.

Don't touch... but you can press the giant red button to exit

Last night was fairly calm besides the fire alarm going off when I was in Dad’s room. I was getting excited and ready to jump into action by pushing beds around, but turns out it was just someone on the psychiatric unit (I think that’s where Chris really should work).  The word from the Mr. Clean (night nurse) was that I should be glad I wasn’t in the room the entire night because of his stomach activity. Although it sounds gross and probably shouldn’t be posted, this is a good thing and we’re happy they’re starting to work   He had a few periods of restlessness throughout the night and this morning when I came in, but overall he was pretty relaxed. The waiting room last night reminded me more of a nursing home reunion than a waiting room. At one point I think there were more people sitting in wheelchair than there were chairs. I’m disappointed nothing overly interesting has happened in the past few days. It’s been fairly quiet throughout the night. And no one is snoring extremely loud, it’s messing up my sleeping habits, I was getting used to the white noise and bright lights.

As I make my way into the room this morning, a nurse who I thought was a model (She told me to put that here) introduced herself (which hasn’t happened in awhile) and immediately made a good first impression (which is huge in my book). Soon after our introduction a smiley nurse comes in, looks at me and ask “Are you the blog writer?” I was thrown back and scared that I have never seen her in the ICU and she’s aware of my blog. I then ask her, how many nurses up here know about the blog? The responds with a simple smile and reports “a few.”  She then goes on to tell me she doesn’t want to make it into the blog, which makes me immediately perk up and pay attention for things so that I can write about her. I told her it’s completely up to her and the care she gives that will determine if she’ll make a blog debut.

I was on edge for awhile thinking of all those who I don’t know that read or follow this thing, but then the more I thought about it I don’t think there is anything I wouldn’t tell them if they were in here right now. If you read it and know me, you’ll know I like to make things enjoyable and light hearted in rough times. It makes it easier for everyone involved to have a laugh here or there. Of course I don’t like confrontation, so I was nervous about those days where I reported we’ve have nurses that we haven’t enjoyed, but no one has been able to compare to my favorite nurse yet, we’ve just been spoiled by her I guess.

I’m hoping today turns out to be a good one, it started off great when I wake up to see one of our ICU families who’ve been here for about week (they don’t stay, so they’re not as fun) sitting across the room. As I start to set up, she walks over to me and tells me her daughter is getting coffee and she knew I’d be here so she’s was wondering if I wanted any. Unfortunately I’m not much of a coffee drinker but I thanked them anyways. 5-10 minutes later I am then greeted by a glass of milk and doughnuts. What a way to start the morning! Let’s hope the trend continues the rest of the day.

It’s always entertaining sitting in the room and watching people leave the unit. Dad’s room is right by the unit and there is a red exit button about the size of a half dollar with a large 6 inch square sign that says “press to exit.” It’s humorous to see the new families come in and wait for the door to magically open by themselves and then they look around in confusion and someone to magically open it. I knew today was going to be a fun day when the smiley nurse was trying to push open the doors without pressing the button. As she was struggling and wondering why they were locked, I get up smile at her and say “I got ya covered.”  Of course this has all happened in the first couple of hours and we still have then entire day ahead of us to look forward to.

The doctors made their rounds this morning and the Intensivist starts to play around with the IV’s and the vent and turning them down. I notice he turns the fentanyl drip completely off (he does have two heavy dose patches though). The nurse came in shortly after he left and as I told her I think he turned it off, she clearly wasn’t too happy he turned it completely off (which made me like her more). He’s been on volume twice today and has tolerated it fairly well. When he gets worked up, he produces a fair amount of secretions which makes it hard to breath. The doctor has changed some meds and he seems to be tolerating it well.

Another therapist came in today but the nurse quickly sent him away. Dad has been active enough recently and he really doesn’t need much therapy; however they’re still coming anyways. When they come we usually have finally gotten him to calm down and we don’t want to disturb him or agitate him again. Even the nurses are careful with moving him or bugging him when giving meds. I’ve started to get into the habit of being very careful and quiet.

Chris went to go donate blood Friday and it usually takes 3-5 days for them to do whatever they need to and send it back, so they can give it to dad if needed. His blood levels were a little low today and they were too thin, so he’s getting 2 units of blood and plasma. The plasma looked like a butterscotch milk shake; it was kind of weird to look at. Unfortunately the blood that Chris donated wasn’t ready yet.  

Today marks day number 21 (3 weeks for those of you who can’t do the math). It’s been a fairly good Sunday with minimal restlessness. He’s still pretty sedated and not responding, but we’re working our way down (slowly). Time has seemed to fly by most of the time, it seems as if I don’t have much time to do anything, which is kind of hard to believe. I don’t really do anything besides sit or wrestle with pops. I was actually able to sit in the room today and watch Indians game with dad (I actually watched it on my computer with headphones in the room). It brought back some pretty good memories of all the games we’ve watch over the years. I’m looking forward to the day when we’re going to be able to do those things again. I think I’m going to get the cheap high seats, just so he’ll have to walk to the very top and get a little exercise for the workouts I’ve had to endure the past few days. 

More like a see-saw, less like a coaster (it's easier on my stomach)

Dad was restless again last night, but it wasn’t near as bad as it has been in the past. I was in the room for awhile and he was resting, so I went out into the waiting room to get a little rest and “fresh air.”  I would go back and check periodically until about 3 in the morning. At that time I told the nurses and respiratory therapist that I was going to lay down and rest for a bit, but if he started to get restless and squirming to please come and get me or call me. I was leery on the idea, but I felt confident enough that they would come get me if I was needed. Debbie one of the respiratory therapist is usually pretty good at letting me know how he’s doing and if I’m needed.

As I made my way into the room this morning Chris was in there with a very stressed looked on her face. She looked as if she had the same frustration I was experiencing the night before. We’re all having a tough time trying to find the right dose of sedation and trying to wean. No one is really totally sure on why he’s squirming as much as he is. The best idea we’ve had so far is because of hallucinations which is common with the fetanyl (pain/sedation drug).  I’ve also heard the term drug induced encephalopathy but when I asked the neuro doctor about it yesterday he didn’t seem to think so, which is a good thing.

The results from the EEG still haven’t come back yet, and I’m assuming we won’t get results over the weekend so we’ll have to wait until Monday. I’m pleased with the cardiac doctor, she’s our favorite one we’ve dealt with so far, and she’s quite thorough and pays attention to the small details. She’s confident in Chris and myself when we bring up concerns or answer her questions. She noticed a rash we’ve been talking about and was concerned more than the other doctors. She explained that some antibiotics can cause fever and rash and we are 2 for 2 on those today. I mentioned something to her about the squirming and that we’ve noticed diminished movement and usage of his left arm over the past few days as well. She’s still pleased with his heart and how that’s doing so she’s not changing any medicine for his heart, but I’m confident she will follow up and consult the other doctors with the other areas of concern.

The Intensivist (who directs and provide care in the ICU) described that we need to start weaning his fetanyl drip and trying to get him out of the state he is in now. Chris is doing a ton of research and feels that they should change some of his meds to help calm him down and help with the withdrawal we’re facing. He’s been on these drugs for 20 days and they aren’t your average Dayquil. These will store in your tissues and stay in your system for 24-48 hrs. I think a lot of people are intimidated by Chris and the fact that she actual researches stuff and other alternative means. It seems to me that they don’t really listen or care what she has to say most of the time, and would rather stay on the track they are now because it’s “their plan.” I’d be 100% fine with that if you could tell me why you’d rather do something this way rather than another one that research shows has benefited. I know as people talk to me in therapy if they ask me a reason as to why I’m doing something different or not doing something, I have a reason for them. Either I’m focusing on something different, I’m not familiar with it, I haven’t seen it to be effective or I just haven’t thought about it. I’m going to tell them that, I just don’t want to brush it off as if I’m not listening.

I think the key word again today is frustration, we just don’t have answers on what to do. We have idea, and we know we aren’t doctors by any means, but we’re trying. Chris and I were talking that we feel most of the nurses who aren’t our normal ones have to draw straws and whoever loses has to work with us. They don’t want to deal with the talkative Gillenwaters who have questions and concerns about everything. It makes you think, if we weren’t here all the time or asking so many questions what would happen. How long would his femoral artery have bleed, would they have noticed the irregular heart rhythm that Chris did? Would he have fallen out of bed yet?

It makes you disappointed and sad when you’re a part of the healthcare field. You see things a little differently. It’s tough for us to take off our hats and be family rather than the healthcare worker. But what if we were just a family member with no idea what was going on? Would we be where we are today?  Sometimes you feel like just a number and that after so many days it becomes a routine for everyone. Every patient is different and every patient will not have the same path to their goals and I think that’s hard for a lot of people to see. It seems as if we have a different doctor everyday and they don’t agree with each other on what they want. One will say they don’t want something, but then the other comes in and adds it. The continuity of care is tough; every physician has a different approach and no one seems to be on the same page. We want dad to get better and we know it isn’t going to happen overnight, and we’re willing to wait as long as it takes, but it just gets frustrating seeing everything that is going on and not having solutions to solve it.

Although dad is pretty sedated, he still has a sense of humor. I’ve been meaning to tell this story for awhile but I keep forgetting. Dad’s bowels have been making some pretty good sounds lately. As Denise and Janet (the dynamic nursing duo) were in the room Chris turns on the fan right as pops releases some methane gases in the direction of the nurses. Next thing we know Janet is holding her breath and running out of the room. Apparently it was pretty powerful. It made a rough day a little easier yesterday, it definitely made for a good laugh. Dad was finally able to calm down this morning around 12. They tried a few new drugs to work in conjunction with the old ones to help with the weaning process. He’s been pretty quiet most of the day but has had a few episodes of craziness. I’m confident with the activity he’s been doing; he’s going to be in better shape coming out of this than he is in. He’s probably going to be able to run a marathon. It’s humorous at times to look at him, because it’s a constant struggle to keep him up in bed. As soon as we boost him up so his feet don’t hang off, he squirms right back down to the bottom. His legs look like frog legs, and he’s definitely more flexible than I could ever imagine.

I’m surprised he’s able to constantly move so much and not fatigue. I’m tired 3 hours faster than he is. You can see his respiratory rate increase and he starts to sweat, but I’m right there with him doing the same. Since he was fairly quiet today I was able to get out and get a bite to eat. It was another nice little break. It’s always nice when we go out and I can experience real air and warmth. I was shocked that is was 90 degrees outside, it was nice for about 2 minutes then I realized it’s way too hot for April. I’m used to the 30 degree terrible weather in Erie.

Rodeo is in town.. who wants a ticket?

Surprisingly there is no one else in the waiting room tonight. I’m starting to wonder if people write a blog about me, and the funny things I do when I sleep. There was a young lady in here for a short period of time that kept staring in our direction for an awkwardly long time, but she eventually left the party and went home. Our normal house guest are still visiting the waiting room regularly, but they have also graduated to bigger and better things and moved camp. The human alarm clock/ secretary is going to stay at his sisters house which brings to question why was he here this long if she lived so close anyways, but who am I to judge? Barb the wonderful lady with the incredibly loud snore is rooming in a guest house with another lady she has met in the waiting room. It has definitely developed into a little family here. Everyone ask about the other and what their loved ones progress is, we all have somewhat of a routine, we talk about the same topics, we laugh about things, it’s definitely made the experience better, it’s just a shame we’ve met under these circumstances.

Tonight I will be in and out of dads room making sure he’s not getting to rambunctious and trying to toss himself out of bed, or getting scratched up by flailing. I sense I may start to have empty nest syndrome since no one else is in the room, it’d be weird sleeping without the ridiculous background noise such as snoring, wolf calls, and Michael Jacksons distinctive yells.

Our luxury suite (normal hospital room) has been taken away because of the need for beds on that floor. We have since moved from the nice pediatric unit to the upstairs hospice unit and it definitely smells different! The pediatric unit, has nice buffed tiled floors with new equipment and a nice lcd tv. The hospice unit, not so much; my first thoughts when I walked into the unit were the thoughts of being in a funeral home. There are live flowers everywhere, and it kind of made me uncomfortable. The flowers appeared to be funeral/sympathy flowers, they definitely were not relationship flowers (I say that like I’d know, I’ve never gotten flowers FROM anyone). Courtney and Chris thought that the “old people” carpet that lined the hallways smelled of a nice clean lemon scent when in actuality I am pretty sure it smelled like urine (then again my chemoreceptor’s may not be as fully matured as theirs). I can’t even describe the odd smell inside the room either, but they did have a normal toilet height that I’m super excited about.  I’ve always been a bit of a germ-a-phob so it’s kind of weird living in a hospital because I know how nasty the germs are. I was looking at the bed sheets on the bed as I was making it, and was sort of grossed out by the weird random stains on the sheets, but then the bigger part of me couldn’t be happier to have the option of sleeping in a “real” bed. My grandparents are sleeping at the hotel next door, and have offered one of the beds numerous times, but I just want to stay close, and how else am I suppose to get all of these amazing stories.

Fridday –

Last night was ridiculous, I had a workout like I’ve never had before. Dad was restless and moving the entire night. I had the task of staying up and making sure he wasn’t kicking off the bed or in a position to hurt himself. He could potentially pull out lines, get his arms or legs stuck, fall out of bed, or even break something with the movements he’s been doing. I basically had to lay on his legs to keep them down and it wasn’t an easy task. You’d think that someone who’s been laying in the bed for over 2 weeks would be pretty weak, but that’s not the case. After wrestling for 7 hours he decided to calm down for a little around 6 am and I decided I needed a nap. I was starting to get frustrated and cranky and it wasn’t a combination I really wanted to have. Frustration began to set in because I felt so helpless. I can’t calm him down, I can’t keep him still and I have no idea how to fix it. I don’t know why he’s moving so much and nothing seems to help and you just get to the point where you get upset when there is nothing you can do.  You can’t fix it as hard as you try. I wish I knew that answers, I think knowing why or what was going on would help me cope.

As I laid down and napped for an hour I was woken up by a new family coming into the waiting room talking with their outside voices. They needed a lesson with using their inside voices, it didn’t help I was already cranky because of the lack of sleep. Added on to the loud talking at 7 there was someone who had phone with an incredibly loud obnoxious ring. The ring was the song the general lee would play on the dukes of hazard when the horn was honked.

I make my way  back into the room and a new nurse is in assessing him. She begins to wake him up and move him around which I was worried about because we just got him to calm down (I think he just wore himself out).  Janet was back again today (a new nurse who’s been orienting to work in ICU ) and we had someone else we haven’t had before. They talked me into going up to the room and getting some sleep around 11 in the morning, because they promised to sit in there and watch him. I was going to go earlier but I was waiting for the doctor to come around and get some word from them.

The first doctor to come in was the kidney doctor who is still pleased with the progress and had no new news to report. The second one was the heart doctor who reported the echo looked good and his EF is still 45-50% which she seemed very happy with.  The last doctor I saw this morning was the neuro doctor. He confused me a lot and I think he had a lot of his words mixed up. He kept on talking about a lack of oxygen, but keep on using the wrong words to describe it. I knew what he was trying to say but he was using the wrong words to describe it (I even looked it up to make sure I was right). Basically what I understood from him is that there really isn’t a way to get a prognosis on the outcome because he’s still sedated heavily. He was saying that everything else needs to heal first and then the brain will recover.

An electroencephalogram (EEG) was done this morning to test the electrical activity of your brain.  A ton of sensors are attached to your head and computer records your brain's electrical activity on the screen or on paper as wavy lines. This will help find out the activity of the brain and show it’s performing appropriately. I feel like I’m not as up to date as I have been in the past, I pretty much slept the rest of the day away and started to move around again at about 6 at night. I think this is what it’d feel like to work night shift, and I definitely don’t enjoy it. I’ll stick to my working in the afternoons and a few mornings. He’s starting to get restless again and is moving around the bed a ton, I’m guessing tonight is going be another night where I’m attempting to keep him up in a bed and trying to keep him still. 

And on the 18th day he rested….(kinda sorta)

Today has been one busy day for dad and I unfortunately really do not have any crazy stories from last night. The waiting room was busy once again, and instead of attending what sounded more like a monster truck rally than a hospital waiting room. I heard entirely too much about acid reflux than I wanted to from a new houseguest. I then decided  to attend the luscious resort downstairs again. I happened to wake up around 5 this morning to the snickering of what sounded like three girls (two nurses and Quincy). They had a plan to put a Depends (diaper) on me and do something with a large syringe that is typically used for fluids. I’m assuming they were going to give me a wet diaper, but they were unsuccessful.

As I made my way upstairs to see dad and Chris who had spent the night in the room, I found out that he was scheduled or a CT scan and was being moved right at that time, there was also a schedule for a picc line, an abdominal ultrasound, and a echocardiogram. The picc line was placed in his right arm and it replaced the central line in his neck. The central line has been in for a week, and is a common sight for an infection. Although they didn’t feel it was infected, he did have a fever and because of the time it was in, it was best to have it replaced. Basically the point of the lines is to make an easy access for the mass amounts of medications he receives.

The abdominal ultrasound was taken to take a look at the bowels and see if there are any blockages or any obvious concerns. A portion of good news for the day is that we finally had some signs his bowels are working (thankfully I wasn’t in the room at the time). We’ve been concerned with the bowels, so we haven’t been using tube feeding but we did start it back recently because he did have active bowel sounds. I believe this now means we can stop the Gatorade IV and increase the amount of tube feeding.

I spoke with the kidney doctor today in the hall and he said he’s pleased with the progress  of his kidneys and feels as if he doesn’t have to see him much anymore, because they’re starting to function properly. The kidneys are typically the last organ to come back after an insult like they experienced, and from the way the heart doctor sounded, they would never work again after his last episode. We’re thankful that this has not been the case with us and that dad fought enough to get these to start functioning again.

The CT scan results came back and it appears that there was some sort of an infarct to his corpus callosum. An infarct is a small area of dead tissue due to a lack of blood supply. The corpus callosum is an area in the brain that connects the right and left sides and allows them to communicate. A neuro doctor came in for a consult and with his evaluation of the CT scan he feels like it’s not big enough to be concerned with. We are planning on getting a couple different opinions to make sure nothing was missed, and that they feel the same way. The hospital that we are at now isn’t really a big neuro hospital and it’s not that we don’t trust this one, but usually I’m the only one who is always right.

This will be our third echocardiogram (echo) and they are used to determine the ejection fraction of the heart. The last time it was tested it was in conjunction with the balloon pump and was 45 – 50%. The doctor was very pleased with those results, but they reported it could be skewed because of the pump.

Being the wonderful son that I am, I forced my hand and made Chris go get a massage today and yes I even paid for it. I am currently the favorite son (my words not hers, but I can read her mind). She was always throwing out clues that her neck hurt, and she did look like she was going to beat me if I said the wrong thing. It’s been a high stress time, and I think 30 minutes of relaxation would be beneficial (I considered asking for the deep tissue one, so she would be in a little more pain, but I didn’t).  She returned and looked refreshed and actually even looked friendly and approachable. If I knew that’s all it took, I would have done it along time ago.

The overall plan for the day has been fairly successful. We wanted all these tests to be run, and we wanted his 103 temperature to decrease. Denise took an extra day of working and was our nurse again and we were all in agreement that it would be best for him to rest again today with all the tests and as hard as he’s worked in the past 36 hrs. We increased the sedation and he’s been resting pretty much most of the day. He’s had a few times were he has been restless, but usually calms down much quicker than the past day and a half.  He was moving and flailing his legs so much this morning that Chris was basically practicing for the rodeo, and was even kicked in the jaw a few times. Although I shouldn’t have found it as humorous as I did, I’m glad to see that he’s actually relaxing and getting some rest.

His fever has decreased at this present time and is now at a wonderful 98.1. This is a significant improvement from the 102.4 yesterday at this time which is a temperature that our friend at Baptist would say sounds more like a radio station he’d like to listen to. Overall it’s been a good day, he’s been calm, tests  have been good so far, I got Chris out of the hospital, and nothing drastic has changed. I’m just glad today isn’t like it was yesterday. Tomorrow I think the plan is to work more on weaning the drugs. I haven’t talked to anyone to determine the plan of action, but I’m assuming that’ll be the goal unless they feel he needs another day of rest. 

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.