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.