More Waiting

The transplant team came by this morning to let us know that mom’s lungs looked pretty good today. They also found what type of bacteria she has so they could give her the appropriate antibiotics. Her kidney stent will have to remain a few more weeks. It looks like the stones/gravel are still passing.

They want to move mom across the hall to their step down unit. It’s like the ICU, for patients that aren’t critical but still need attention. I’m told that physical therapy also visits this ward much more frequently, so she can keep up on the rehab until she moves to the rehab facility. I think they want to keep her close for as long as they can. They have become very attached to mom and are all amazed by her progress, determination and strength. They’re protective of her and get very upset when setbacks happen. It’s amazing how many people we’ve added to our family!

We’re not sure when she can go to the step down unit because all the beds are full, as is the rehab facility. It may be a case of whichever one has a bed first, but I don’t know. I didn’t think to ask if she will still go to the step down first, regardless if a bed opens at rehab first.

I’m still out of sorts. The day just isn’t processing for me. I had planned to go home tomorrow afternoon, but when she went back to the ICU, I put that plan on hold until I knew where she was going to be this week. So today is Tuesday and it wasn’t until a few hours ago that I realized tomorrow is Wednesday and maybe I should be packing. Then I got thinking, which is always dangerous for me, do I leave tomorrow? Do I stay in case she is moved to the step down, or even rehab? I know she’s doing fine, and would be fine if I weren’t here, but I really hate to have major changes occur without me. And moving across the hall may not sound major, but it is. Her mind is stronger and more positive but is still fragile. She has been complainng that she’s slurring her words and is confused. Not crazy talk confused like before, but cob-web in the brain confused. They think it may be some of the meds, so they are watching her and adjusting them. She was worried she had a stroke. They had checked that previously, so it’s not likely, but it’s good they are watching closely. I noticed today that the longer she is in the ICU, the more she is practicing her breathing techniques, which means anxiety. She said last night she had a little anxiety, that she was able to get through, but it was harder. I was afraid that might happen. She was also very restless today. The clausterphobia was setting in again. It took major effort to keep her occupied. We watched tv for awhile, exercised and talked a lot. She didn’t sleep well last night but she was too restless to nap. The sooner we get her out of here the better. She is still looking forward to rehab. She says it feels more homey there. Not so clinical. Feels like a hospital to me only with better paint choice, but I’m not the one cooped up in it either. Whatever it takes to get her on her way to a normal life.

Everyone says that they don’t expect her to be in rehab long at all. She’s doing so well. I just hope wherever she is, she can get PT soon. She said today she noticed that she was weaker, already. So she knows she needs this. When I left her today she was just ordering dinner and was feeling sleepy but no longer restless. I hope she can sleep tonight.

Ho Hum Kinda Day

Being back in the ICU is like coming home from college. It’s both comfortable and awkward and you find yourself looking at the calendar, counting down the time until you can get back to your life again. The more I sat there, the more I realized that this isn’t the place for us, no matter how wonderful the care and how safe I feel with mom being looked after by these nurses. It’s time to move on and we’re both ready. Mom said that being back there has felt like a huge step backwards. I had to remind her that it was temporary and that these things are expected and part of the transplant process.

She is doing better today. Last night she didn’t have one spec of anxiety! I am so proud of her! Her temperature was normal today but she does have a slight case of pneumonia and infection in her secretions. She is on heavy duty antibiotics which seem to be working nicely. Her lungs looked slightly better this morning. They took her back off the ventilator and re-capped her trach, which she loved because she could talk again. I saw a note she wrote to her night nurse that said: Can I have my voice back? I thought that was cute. The way it was written was like it was punishment. Don’t make me take your voice young lady. Ha Ha. Not that she was thinking of it that way. Just one of those things that struck me as funny while in my sleep deprived stupor. I know, twelve hours of sleep shouldn’t leave me deprived, but I require a ton of sleep on normal days. So it will take me quite a while to catch up on those 26hours I was awake.

We were a little bored today, which I think made us both miss rehab more. There’s more freedom there because you’re not tied down to ventilators, IV lines and monitors. In rehab, on your free time, you can wander down to the common areas or into the courtyard and hang out, see the world and interact. In the ICU, you’re stuck. You’re at the mercy of everyone. So we watched some Olympics. We played hangman. We stared at each other. We would have played cards, but when I pulled them out of one of mom’s bags from rehab, that I tossed in the closet, they went flying everywhere. And all I could think of was 52card pick up! Not amused.

It’s possible mom can go back to rehab on Wednesday. We’ll just have to see how it goes. When I left she was in good spirits, still tired but very coherent despite her elevated CO2. She was getting ready to order dinner. It’s about all you can look forward to and have some semblance of control when you’re in the ICU. She has to incorporate more protein into her meals, so they ordered Glucerna to drink with each meal. She wasn’t thrilled. She has a very sensitive palate and protein drinks really turn her off. She was very good about it though and said she’d give it a try. She realizes there are things she has to just do to get well and this is one of them. Good for her!

Minor Setback

First off I’m on severe sleep deprivation so not a lot of coherency happening. I’m writing this monday morning but this is actually Sunday’s  update. So pretend it’s Sunday when you’re reading this.

 

Last night(sat)at 12:30am just as I was getting into bed the nurse from rehab called and said we just sent your mom to the ER at UMC. She was getting a blood transfusion because her rbc’s were low (side effect from meds). I knew this would happen because she tends to fluid overload quickly. I warned them but there’s not much they can do at rehab but monitor and then send to ER if problems. So that’s what they did. I got there about 1am and she was already in a room getting worked up and they did a bunch of tests, xrays etc right away and then we waited and waited and waited and waited. EIGHT hours later they sent her up to the ICU. It was so weird she had her old room and nurse laura who was her first nurse after the transplant. Serious deja vu and not the good kind. By this time I had been up well over 24hours and my body doesn’t tolerate lack of sleep. I was starving and getting sick but oddly enough I felt like I could stay up and seriously debated it but I went to the hotel room and slept for three hours, after wolfing down the most godawful mcdonalds chicken.

 

I had to let rehab know and they said come get her stuff we’ll give her a new room when she gets back. We can’t hold it and we have patients waiting. So when I got there they had already packed up everything and filled her room. She’s not going to be happy. When we were at the ER she said do I get to go back to rehab? Don’t let them take my room away. Bummer. But I did clarify that she is to be in a private room, so we were right about that!

 

Anyway I got back to the hosp at about 4pm and I knew they were going to be doing a bronchoscopy/biopsy of her lungs because they were pretty wet. So when I walked in her room my heart stopped. She was on the ventilator!! I thought oh crap that’s a major step backwards but they didn’t feel it was long term. Just overnight. She was mostly on it because of the bronch and to pull off her co2 which had gone sky high. She was awake and talking a little and managed to swallow her meds. But then she fell into a deep sleep pretty quickly. She’s exhausted. They also put the urinary catheter back in! But she’s on high doses of lasix and it was necessary.

 

So they said she’s got a touch of pnuemonia and a fever which they are giving her antibiotics for. But before they could get them on board her temp went from 31.1c to 39.5c in a matter of 15 mins!  That’s pretty high. I hate metric. 36.7 is normal.  I looked it up 39.5 equals 103.1F. When she’s home they say to call doc when its above 100.4!

 

So all is being worked on. Everyone is obviously concerned but feels its manageable and says that its semi-common to have this happen. I’m bummed because she hadn’t even had a chance to get too involved in the rehab yet, that was starting tomorrow(monday). I worry that being back here will bring back that fearful, anxious mindset but so far she’s doing well. Nightime will be the time to really tell.

 

I know I’m weird but its a relief to be back in the ICU among the familiarity of it all and the people. There is just no comparison at all. None. I feel safe and confident in their abilities. I don’t have to stress over whether or not she got her meds or are they cleaning her properly etc. Nurse Amy (we bonded with her) lives near the rehab place and when I went to pick up moms stuff the tech told me that she stopped by to say hi and visit! She told the girl, yeah didie is like my mom.  How sweet. Then when I got back to the hospital they said she called there to check on her.

 

Ok they gave the iv antibiotics about 10mins ago and her temp has come down to 39.4 so that’s good. And continued down to 39.2 by the time I left. Lauran and I both thought that it worked awfully fast. She said it may be her own body fighting it because she barely got the meds into her and it was coming down. So that’s all good.

 

Once they get her all settled, I’m going back home to sleep. I have so much to do. I still don’t have an internet connection. Its all becoming frustrating. I’ll manage.

 

I left at 6pm, unloaded the car with all her stuff and crashed. I intended to wake up and write this so it would be “on time” but I slept right through to 7am Monday (today)! I’m still pretty tired, but I want to get to the hospital before they do rounds. I will come home and sleep some more I’m sure. I plan on writing Monday’s update this evening at my usual time, so all you morning birds will be back on track.

 

 

Cooling Off

I slept on it and woke up with a plan. I wrote down all my questions and concerns to help me organize my thoughts and emotions. The last thing I need to do is go in half cocked and make a mess of things. Besides, it’s not my way. Usually I just stew, vent to my friends (alot -thanks) and move on in a more mild manner, asking question after question. I’ve been around the medical field long enough to know what, when and how to ask things. I am the queen of questions and have learned to back door them enough to get what I want while seeming, dumb blonde. Maybe it’s inherent, but it’s what works for me. So I did just that. Compiled my list and am ready to go for it on Monday. Some of what I was feeling yesterday, was what I thought, just initial viewpoints and adjustments. I realized that we went from glorious ICU to vacant Rehab. We never went to the step down unit, so there wasn’t a transition period to adjust to the lack of attention. I also think this is where mom would have learned to take more control (and me too) of her situation, meds, schedules etc…So that realization helped my brain (and attitude) adjust a little better.  

Today was a much better day. There certainly aren’t any warm fuzzies coming my way yet, but it was better. Much more professional and more along the lines of what I felt should be going on. Things I feared weren’t getting done, in fact are. So that was a big relief. I’m still leery and will be watching every move right up until we are headed for home. You can be sure I won’t be exchanging phone numbers with these people. At UMC everyone was so nice and I did make friendships, but here I am so over it all, and more concerned, that I have no desire to get to know these people on a personal level. This makes it much easier for me to justify being harsh if the need arises.

Because today was Saturday, it was a slow day. Mom was up and dressed and sitting in the chair filling out tomorrow’s menu. It’s like the highlight of the day. Then when the day comes, it’s like a mystery of what she’ll be eating because she’s forgotten what she chose. We love surprises.

She had OT come in today and work with her arms. She managed to lift two pound weights doing several exercises about ten times each! I was surprised. I really didn’t think she could do that much. There was one arm exercise that she couldn’t do with weights, but she’ll get there. She was pleased with herself.

During lunch she noticed she was having trouble swallowing, so they had us take her food down to the dining room to sit with the speech therapist. It still seems weird to me that the speech person deals with this, but I guess it sort of makes sense. Anyway, she has a group of people that dine together under supervision to make sure they are safe and to pinpoint problems and come up with solutions. For mom, she needs to take a drink after each bite, especially with the “harder” foods. This seemed to help. They changed her menu to include sauces with meat. Right up our German alley! We LOVE sauce. From now on she will eat in the dining room with the group until they see if this is working for her.  When we first arrived, she decided to eat all her meals in her room. She felt awkward eating with strangers. But after today, seeing the room and how pretty and comfortable it was, she was much more open to it. She even said, maybe tomorrow we can eat here. Super!

After eating, I wheeled her back to her room, or tried. Got lost twice. It’s a big place and parts are closed off because of remodeling, but it was fun. Mom enjoyed seeing her surroundings. Plus! We finally found the right hallway back to her room and I stopped in the entertainment room for her to see. It sits right off the courtyard and has game tables, tv’s, books etc… So we sat there and worked on a puzzle someone had started. We were there for about half an hour and she said to me, I’m really enjoying sitting here like this with you, it’s like old times. Yay! Then she said, let’s go back to my room so I can cut my hair.

Seriously? Wow! She was serious! I had no idea she was thinking outside her medical needs. So we went back and she cut herself some bangs. Very cute too. Before her transplant, she was famous for cutting her own hair. It always looked so cute too. She always said, it’s a work in progress.  When she finished she said, well I might as well put my make up on while I’m here. So she did her eyebrows, mascara (talk about coordination!) and face cream. I was speechless. I just watched in amazement. I couldn’t believe she was doing this. I remember Dr. Feldman (her pulmonologist in phoenix) saying, we always know when the ladies are feeling well enough to leave the ICU, because they ask for their lipstick. So I think she’s on her way! Praise God!

She was pretty tired today again. At one point she couldn’t even open her eyes when the nurse was talking to her. She tried but just couldn’t. Later, the nurse came back and said that she’s going to have a blood transfusion because her RBC’s are low. Mom asked, what can I do to prevent that? The nurse said, eat well and get rest, but mostly there’s nothing because it’s a side effect from one of the meds. So mom is very aware that she needs to take charge of her health. That’s great! Just one forward movement after another. The nurse said that the low RBC’s could be contributing to her sleepiness.

At the end of the day, I told mom I’m going in just a bit and she said ok. Then said, I’m so glad it doesn’t freak me out when you tell me that now. I said me too! So more progress there too! She never says, where were you, do you have to go, can you stay with me, or give me some more time because I’m panicking. I don’t have to wait for her dinner to arrive like back in the ICU. I think she feels safe here and she can see that progress is being made, strength is gaining and home is around the corner. The change in mindset is astounding and I’m grateful. She never says no anymore. Well, actually I think her first instinct is to say no, but she immediately corrects herself and says, oh sure, why not. I can do this. And man can she ever!

Gut Feelings

I’d like to close my eyes on this weekend and when I open them on Monday, I’ll see the big picture. So far our experience with rehab has stirred up uneasiness. I am trying to reserve judgement until Monday because I have a feeling it’s because we’re still settling in and we arrived just before the weekend, when schedules are minimal. I also think that we were so completely spoiled by our time in the ICU, that now that we’ve entered the polar opposite, we are in a bit of culture shock. We knew we wouldn’t have individual attention, with nurses hovering over us and meeting our needs in a timely manner. But we really didn’t expect a ghost town. At least that’s how it feels. The rehab team, meaning the various therapists, have a schedule and are prompt, nice and good at what they do. The nursing staff is what worries me. I have no doubt that the rehab portion of mom’s care will be just as great as UMC, but the medical side of things, is quite different. It’s not that they’re not good at what they do, because I’m sure they are; I’m just waiting for the evidence.

It seems as though no one is on the same page, no one knows who mom is or even that she’s a new patient. When the case manager walks in and states that she hasn’t read mom’s file and tell me why you’re here, that puts me on edge. Why even walk in the room if you haven’t even bothered to familiarize yourself with your new case. And why are you coming in at 4:30pm at the end of the day for the very first time on a Friday, only to tell us you’re not going to be here and someone else will be taking over on Monday. Uh, can you say Quota filled???

Now, I’m sure I’m overreacting and being dramatic when I say this, but I get the feeling that the education is not what it should be. The basic knowledge I know you get in nursing school isn’t that difficult and this job is requiring no specialty so why do they not seem to know the basics? I do! and I’m just a vet tech! Surely if I know this stuff, they certainly should. And humor really doesn’t get you off the hook in my eyes. Either you know it or you don’t and if you don’t, fine, but don’t pretend you do. Find someone who does or ask.

If mom was a typical rehab patient, then what they provide is just fine. Nothing more is needed. But she’s not. She’s had a double lung transplant for god-sake and she’s immunosuppressed! Let me at least see you sweep the floors, or use gloves, or at least use anti-bacterial lotion. Ok, I know, dramatic. It’s probably not the reality, but it’s my impression. It’s all just a little too casual for me. I don’t expect them to hover at this point, she doesn’t need that and it obviously defeats the purpose of rehab. But answer the call button when it rings. If you promise to bring her juice, then bring it. Mom says there must be a giant abyss right outside her room because whenever they leave, they don’t return.

So I’m a little frustrated, but more than that, I’m concerned with the lack of attention to the care of her trach, feeding tube and pic lines. She has so many different people coming and going, and I guess no one does a once over or reads the chart for updates, that they didn’t even know she had these. Well the trach is obvious, but the others aren’t. They need to be cleaned and flushed regularly. Infection is a huge concern when you’re immunocompromised. Again, nursing 101. When I’m having to ask them to do it, I get worried. What if I’m not there? This is the time we’re supposed to be backing off and giving her space to be independent again, but how can I allow that when I can’t trust she’s getting the care she needs and deserves? And I’m tired of hearing excuses. ICU used to tell us, we’re not a rehab facility. Now rehab says, we’re not a hospital. Ok, fine, I understand that, but someone better step up to the plate and do what’s needed and what’s right. And it shouldn’t be me. I shouldn’t be hovering over mom and I sure as hell shouldn’t be hovering over the staff.

So before I freak out entirely and go in with guns blazing, I will wait until Monday when I pray the real “action” starts. I already know that not much happens on the weekends, which is fine. So I will wait. I have seen her therapy schedule for Monday and it’s a full morning and early afternoon.

As I said, I have no doubt the therapy will be super and I know she’ll really respond to it. I have already come to really like the speech therapist Lori, and the Occupational therapist, Brandi.  Brandi even played cards with us today. The caveat was that mom had to do all the shuffling and dealing with one pound weights on her arms! We played 5 hands and she did a great job! I thought it was innovative. I got the feeling that when Brandi came in she had other tasks in mind, but when she saw us playing cards, she said, oh, I’ll be right back, and came in with the weights. She said I don’t want to interrupt your time together, but let me just have you do this one little thing for me. Clever.

Mom also saw the physical therapist. She had her sit on the edge of the bed, which she does with zero problems now, and they did a few different legs/feet exercises. Then she had her stand up at the edge of the bed and raise up and down on her tippy toes! She did it and with nice balance. Mrs. Suitor our ballet teacher would have been proud! She had more difficulty when she would lower down and try to rock back on her heels and raise her toes up. She can rock, but those little piggies sure don’t want to lift up to the sky. But overall, I think it was a good assessment. She continues to impress me. She stood up three times in a row with those toe raises in between. Not as shaky as yesterday.

We really have to get her hearing fixed. She thinks she’s hearing something and answers but it’s completely wrong. Because she thinks she understands what people are saying, she doesn’t say things like, I don’t understand, or I didn’t hear you. So then it sounds like she’s senile because she’s replying with completely strange answers. Then we say what? Then she says huh? And in a matter of three seconds we’re all confused and frustrated. It was a long day.

So Monday, I can’t wait to see all they have her do. I also hope to get things clarified in my mind and in reality with the staff as to what we can do to all get on the same page. Essentially, I need to make them see that she needs special care and not because I’m this demanding, unreasonable family member who doesn’t know anything, but because it’s a fact of her survival and I’m her advocate. So that will be fun. More confrontation for wussy Sherri. Oh Joy! Better yet, I say, let’s get in, get strong and get home.

Light at the End of the Tunnel

When I got to rehab today mom was sitting in a wheelchair by her window with the great courtyard view. She was speaking to the speech therapist and was dressed in street clothes! It was a vision of what was to come. She looked great. She looked fresh.

Lori, the speech therapist, was telling her that they will go slow with her since she’s a lung transplant. They don’t get many lung transplants, so they’ve put their kid gloves on with her. This is not to say that they won’t be pushing her to succeed; they will just do it gingerly. They will have the function of her lungs first and foremost in their minds. They don’t want her bending over, too restricting on teh breathing. They will teach her how to use “props” as life functioning aids. Items such as those grabber things you can use to pick up stuff from the floor, was one example. I asked her if these restrictions were a life long thing or not and she said, oh no, just until we know she can fully function without any breathing compromises. She said probably until the end of the year. Mom was pretty tired today and was having trouble understanding things people were telling her. With her bad hearing and sleepy confusion, she uses her own mind and thoughts to fill in the missing gaps. She thought the lady said that she’d be in rehab until the end of the year! We all quickly assured her that was no where near the case. She will only be there a few weeks. She was obviously relieved.

She slept most of the day. They did wake her up for a chest xray. She was going to use the wheel chair to get there. She told the tech, I’m going to need some help. And before Audrey could say anything, mom said, No, I can do this. I can do it, I can do it. And then stood straight up, all by herself!!! She sat down and as Audrey started to wheel her down the hall, I started to cry. It was truly a special moment for me to see her do this on her own and so effortlessly. Even more, to see the change in her mindset. The determination was back. When she returned to bed, she needed to scoot higher up in it and Audrey said, ok, I’ll tell you how but you do it. Mom said ok. She bent her knees up (I didn’t even know she could do that!), then grabbed the siderails and hauled/pushed herself all the way up. It took two trys to get all the way up but she did it! I was stunned.

Then she slept for about 3 hours. It was a well deserved rest. They told her that today was going to be pretty mild as they were still doing their evaluations. I’m not sure what tomorrow will be like, but the weekends are light. They still have therapy sessions but not as intensive because they have skeleton crews on the weekends. Monday will be the day they jump into the real work.

They stopped her tube feeds, but she’ll have the port until her docs decide to take it out. It seems as though her kidney gravel worked itself out, or settled enough to stop causing her pain and frequent trips to the bathroom today. So that was nice. She didn’t have to worry about extra medicine. Speaking of medicine, she learned this trick from her nurse. He said, I’m bringing you some apple sauce and we’re going to put your pills in it and you can just eat them all together. It helps them go down easier and allows her to eat a few at one time. So that’s your friendly tip of the day.

Her cute little roommate left today. Mom was told that tomorrow she will go to a private room and she won’t get anyone new today! She was thrilled! This was the best thing she had heard all day! It’s all she could think about, when she was awake. It overlooks the parking lot but she said she was more than willing to give up the courtyard for privacy.

She’s been put on a cardiac, diabetic, no salt diet. They give her a small menu for each meal and she circles what foods she wants. She did this early this morning before I arrived. When they came to pick up her choices, they laughed and said it was all wrong. How can it be wrong, she circled their choices. Well it turns out there was this big number 5 and a star at the bottom. This means she’s allowed no more than 5 starred foods per meal. So she had to look and see what had stars and what didn’t. For lunch she had circled 11 stars and asked for salt. So we quickly learned that everything is regimented. She ate most of her lunch which is great, because now that she doesn’t have the supplemental nutrition in the stomach tube, she will have to make sure she eats well. Not only in quantity but in food choice as well. She’s dying for some candy though. They said she can have a little, so I will bring her some tomorrow. They did make sure that she was accomodated by putting down that she’s allergic to fish. She’s not really, she just hates it. They said if they say she’s allergic that will ensure she won’t mistakenly get it. Thoughtful, clever and a little sneaky. Love it.

While mom was sleeping, I discovered that the ipod headphones fit in her tv! So I watched tv and at one point mom woke up and saw I was tired and said, I think it’s home time for you. Go ahead and get home and rest. Wow! Before I left I showed her how to work the tv, because she had some interest in it. She wanted to watch some of the Olympics, but we came across the tail end of Jeopardy, her favorite show. She hasn’t seen it since the day before her surgery. So it was a nice treat and she was all settled and happy to watch.

Her attitude has changed dramatically. When I told her I am coming in later tomorrow, she immediately said ok; no disappointment in her voice! I asked her how she was feeling about it all, if she was nervous etc. She said I know I can do this, but sometimes I have to say no. She clarified, not because she is refusing and doesn’t want to, or feels she is incapable, (as before at the hospital), but because she is overly tired. For example, when she first stands up after resting awhile, she does it with great ease, but if she has to get up a second time, right away, her legs are like Jello and needs help. So she’s afraid that if she says no they will think she’s being a prima donna, and not for a real reason. I told her she just has to explain herself. They already said that she is in control and want her to speak up when she’s tiring or having trouble. So I think she’ll be fine. She knows now that she can do these things, and she’s ready. At least until she gets working on Monday! Day by day. For now they will monitor all her movements; remember the bed alarm? But as they see her progression, she will gain more freedom. It’s like she’s grown from child to teenager!

New Beginnings

Another jammed packed day. I managed to talk myself out of the bad mood I woke up in and got all my errands and packing done in time to leave for Tucson. I even had lunch with Lee. I dropped Malibu at school and I was so sad. I know it’s silly because he’s going to be 16 next month and doesn’t need me around all the time. He does very well on his own, but I’m attached. I want to do these things for him. I want to be able to take him and pick him up every day. I want to be at home with him even if he’s holed up in his room. The summer has already been shot and I feel as though this could possibly be my last summer where he actually wanted me around. He’s a Junior this year and this is the year where kids start coming into their own, getting more of a social life and all that. I’m sure the summer before his senior year will be spent with friends, and it should be. This was my time. Now that I’ve lost that, I want to be able to do all the little things during school that I can. So while I’m completely bummed and feeling sorry for myself and him, I know that it won’t be long now before I can do all these things I long to do for my son.

Mom didn’t get to rehab on time, no surprise there. She arrived about 1:20pm. I arrived at 2:45pm. I had to make a pit stop for her. She didn’t get breakfast or lunch, so she asked for an In & Out Burger. She looked so good. The rehab doctor was getting a history on her so I didn’t get to talk to her right away. I did notice that her oxygen was at a half liter or possible turned off altogether! It was hard to tell and I wasn’t about to ask about it because then she’d think about it and feel it wasn’t enough. Shhhhh. Don’t tell.

I must say that everyone seems pretty nice. It’s certainly a different environment. We have been completely spoiled by the stellar care by the UMC 4NW ICU Staff. In the ICU she (we) got individual, prompt attention. It’s what they do. Even though the last couple of weeks, she wasn’t considered an ICU patient, they still met her needs quickly and with great sympathy and encouragement. Rehab is just that. Rehab. Not a lot of warm fuzzies going on here. Yet. The niceties seem to be surface driven and not completely deeply heartfelt. Yet. Rehab is a whole different animal. We’re not in Kansas anymore Toto. It’s no longer one nurse for two patients. I think they probably have 20 patients. I don’t know, but I know it’s not two. It’s more casual. Things don’t need to be immediate. Needs shouldn’t be immediate. It’s hard to shift your mind when you’ve had such attentiveness. We’ll adjust.

Aunt Carol left shortly after I arrived. She waited all day to get mom to rehab and hold down the fort while I was on my way. After she left, mom ate her hamburger. The pharmacist came in to get her meds. Turns out he also had a lung transplant! So he can relate. Then we were alone for quite some time. I kept waiting for someone to come in and welcome us and give us the run down on what to expect. Never happened. Mom asked three nurses for a cup of water so she could brush her teeth. They all said, sure, but never returned. It’s just not a priority. Rehab patients must learn to do for themselves. But it seemed as though they expected her to be doing this now. Or didn’t realize she couldn’t yet. I don’t know. It all seemed so strange and I started to get a little uneasy because one person came in and thought mom was someone else. Others didn’t seem to know her history. It didn’t seem as though anyone was on the same page. Yet.

I am looking forward to tomorrow because her evaluation will begin. She will meet with physical, occupational and speech therapists. I thought the speech therapist seemed weird but they also deal with the trach and test her swallowing ability, which she has no problem. Once the eval is complete, they will come up with a daily plan for her to follow. We’re both really going to have to change our mindsets. Out with the old, spoiled, dependent, cushy times and in with the self sufficiency and can do attitude. I will really have to force myself to step back and be the observer. Now I’m just a visitor. I’m no longer the patient advocate, helper nurse buddy, who has some medical background. I’m out. They’re in. I have to let go so she can succeed and that can’t happen if they can’t see her true needs. If I’m there, I’m enabling, helping and hovering. Here, that won’t benefit anyone. I hope mom will equally adjust to my lack of involvement. Guess she’ll have to.

She is sharing a room. From what we heard, there were several new admittee’s today and she was really lucky they had a bed for her at all. So we’ll take it. It’s this wonderful set up. All the rooms surround a beautiful lush courtyard with grassy areas, gazebo with picnic tables, lots of trees and flowers. Mom has the window side of the room so she can see all this. Plants are her passion and I think it will help her mindset. Getting back to things she loves. Her current roommate is so cute. She about 3 feet tall. Not really, but this tiny older woman, about 86 and sharp as a tack, and so sweet. She introduced herself. In five minutes I knew her whole history. But she was respectful of our privacy. Too bad she’s leaving tomorrow. I hope the next roommate will be equally quiet and have all her family out of town too, like the current lady. No sharing, I say. Too many people get me all annoyed. I can only imagine how it is when you’re trying to rest! Mom wasn’t as bothered by it as I was. The whole day she impressed me. Not one ounce of anxiety. At first I thought she was having a few “episodes” because she was doing her breathing exercises, but I am pretty sure it was back pain. Seems her kidney stones/gravel are on the move. I pray so hard that this won’t become a set back. I would die if she had to go back to the hospital so soon. Please No! As the day wore on, I could tell the pain was getting worse. She called for a pain pill and they said of course, we don’t want you in pain. So that was nice.

Nurse Amy from UMC was so sweet. Last night, at home, on her own time, she made this giant card for mom. On the front it had some mantras that mom had used to get herself through the panic attacks. Some were ones she used, others were ones from the nurses. For example, I am Ok. I am Tuff (Nurse Mark always told her this). Don’t say No. I can do this. Breathe.  Then she had all the nurses signed it and wrote little notes to her. Can you imagine? See, truly caring people. Even Dr. Moulton signed it! I don’t want to leave there. Don’t make me leave! Well, I’ll just have to make new friends. Boy when this is all said and done, I’m going to be an honorary tech, nurse, respiratory therapist, pt/ot and housekeeper! If only I had signed up for their school of medicine, I could have another degree by now!

I can’t wait for tomorrow to get the process started. I know she’ll do great. I am so amazed at how well she did. My prayers were answered. NO panic attacks. Just amazing. I am so proud of her.

Movin on Up

Busy Busy day. It was Malibu’s first full day of school and that always makes me sad. If it weren’t for the whole getting smarter, need a degree to function in the world thing, I wouldn’t care if he went or not. He’s highly intelligent, let’s just leave it at that please. Life is so much happier when he’s not in school. It just puts a lot of pressure on all of us to help him succeed. Don’t get me wrong, he’s a good student, when he wants to be, but he is the typical teenage boy and the urge comes and goes. I’ve learned over the years that if I quit nagging him he will get his work done, but his time table and mine are way two different things. It’s one of the things that drives me crazy and makes me realize that I’m more of a control freak than I thought. School basically puts us all in a bad mood. It’s just stress added upon stress. This is will be especially so since he’s basically left up to his own devices to get himself to and from school, feed himself and make sure his homework is done. Lee is working a lot of hours to make up for the loss of my income while I’m in Tucson. At first Malibu thought it was cool being “on his own” when I first went to Tucson. Now, like me, we’re totally over that independent thing. We really want to be home together, with everyone and everything in it’s place. Mom cooking (yeah right), Dad cleaning (thank you Army!) and boy doing boy things.

This year will be doubly hard because apparently childhood is over and you have to decide whatever it is you want to be when you grow up. Hell, I still don’t know what I want to be, how can a teenager make that decision? There are preps for the SAT’s, pre-SAT’s, SAT’s themselves. College brochures to pour through hoping one stands out and has the curriculum that will bring out whatever it is you decided to be. Gee no pressure. I probably will be no help, I will either pick the one nearest the beach or with the prettiest campus. Lee and Malibu will probably pick the ones with the hottest girls. Thank God Hooters doesn’t have a university! Or do they? They have their own airline and hotel! I may be in trouble here.   

Luckily it looks like it won’t be too much longer that we all have to sacrifice. They say mom is definitley scheduled to move to rehab tomorrow at 11am! We hope it’s true this time. The suspense has been killing us all. When she heard the news she was first nervous, then settled quickly into the idea. I do think she is still apprehensive of it all. I knew she was concerned that she wasn’t walking but didn’t realize how much so until Aunt Carol told me something she said today. Nurse Amy was trying to get her to do some walking and mom kept saying no, I’m not going to. Amy said, come on you’ll be doing it in rehab, why not start now, you’re doing so great. Mom said, everyone keeps telling me I’m doing so great and making such progress. I don’t think people realize how sick I really am! WOW! Who knew she thought that. She’s right, we all see her astounding progress, but she’s still living in the eyes of a sick person. She doesn’t realize just how far she’s come. To her, she’s really only been coherent for a few weeks and it’s all hitting her so quickly. Knocking the wind out of her with the progression of things. Amy said, you are not sick. You’re weak, but not sick. Rehab will make you strong again and then you can go home and have your life. I think this sunk in a little, because she quit arguing and walked around a little. Good for her!

Aunt Carol will be there when she’s moved, so she can help with the transition and get her settled. I’m so grateful for this. It was something I was sort of dreading. I’m not sure exactly why other than I’m tired. I’m overwhelmed myself. I still feel as though Aunt Carol deals better with mom’s anxiety and mom needs that tomorrow. She doesn’t need to see me trying to not be overwhelmed and worried and failing miserably. I’m an easy read and she knows me so well. So I feel very blessed that Aunt Carol is taking on this task. Thank You! I will join them later in the afternoon so Aunt Carol can get home. Tag I’m it!

From what I understand, mom will be evaluated on her current abilities and come up with a daily regimen. She is still worried that they will push her past her abilities despite our reassurances. I think once she sees the place, meets the people and sees exactly what they have in store for her, she’ll still be overwhelmed but perhaps a little less anxious about it all. Or maybe she’ll be anxious to get started?! We can hope. One thing we are unsure of is whether or not she will have a private room. Of course we are praying she does. Who wants to share with strangers; this isn’t college. Someone said, we insist she has a private room because of her compromised immunity. Makes sense. Great. Let’s go with that. Another person said, oh, no, she will share. After all, rehab is all about getting back to a normal life and normal life is full of strangers. Yes, that may be, but it doesn’t mean she’s sleeping with them! We’ll fight for the private room of course. Especially since my charming personality doesn’t exactly blend well with strangers. I think it’s best for all involved if we have a private space. But they’ll find that out soon enough. It doesn’t have to be a big deluxe apartment in the sky, just something nice enough to get the job done.

So tomorrow is a day filled with possibilities. I pray she can continue to work through all the anxiety she may feel. She’s becoming a master of control and I hope this won’t set her back any. Seems as though just when she’s rolling right along, something knocks her back a little, even if it’s her own mind. I have to remind myself she’s incredibly strong and determined, as she’s proven time and again, but when it’s your mom, you tend to forget. All you see is the love and the softer sides. Not the true grit that pushes her through all the murkiness. I know she’ll surprise me.

Leaps & Bounds

Today was a day of getting back to normalcy. It was the first day of school and Malibu did great getting up with his alarm clock. It was our test, because when I go back to Tucson, he’ll have to do this and get himself to school. Something I hate, but it’s a fact for now. He’s growing up so quickly. I made him his special chocolate chip pancakes. Our first day of school tradition. Ran him to school,which was sad. He obviously didn’t want to go, but didn’t put up a fight of course. The high school is under major construction and nothing is as it was last year. So I was nervous for him to find his way around in time. He’s like me, functioning in unfamiliar territory makes us nervous.  I was grateful that we arrived just as his friend walked by. Luckily he only had a half day and he was going to the movies afterwards with his buddies. Should be a pretty mild day for him. Phew! I came home and that’s when it hit me. This is our old routine. This is my life! I’m back in it! I feel normal! It was the first time I didn’t feel like a stranger in my own home. I felt energetic, I had a purpose, I had direction. I even cleaned! Ok, that part may not be so normal! ha ha! I even had coffee with my best friend! It was great. Too bad it’s temporary.

I’m not the only one who felt normal. Aunt Carol called to say this was the best day ever with mom. She was herself. She was fully awake the entire day, chatty, coherent. She was thrilled. Early in the morning there was talk that tomorrow was definitlely the day that mom would go to rehab! Aunt Carol said, mom was totally ok with it as well. PRAISE GOD! I am stunned. She continues to amaze me. She is solely using the bedside potty; no more bedpan. And each time she gets up, it’s getting easier. Everyone is surprised at how much strength she has. Nurse Amy has been slowly, secretly turning down her oxygen. She was at 4Liters this morning, and they got her down to 2Liters and she didn’t even know it or seem bothered by it. I was concerned it would affect her walking, but it didn’t!

She had PT today as well and they too were amazed at her progress. They were trying to tell her all that would happen at rehab but the guy is so hyper that it overwhelmed her and she started to get anxious. She started her breathing and focusing, while Aunt Carol explained to him that he was an idiot. Not really, but this guy, really has no clue. Every time he comes by, he’s hyper and throws all this info at her, barely looks at her, so he never sees how agitated he’s making her. Just one of these guys who has no clue of what’s going on around him. I think he just is so excited about helping people that he gets caught up in it all. Anyway, she worked herself right through it. He was nice though once Aunt Carol enlightened him, he stopped and waited and then spoke softer. So that was good.

Later in the afternoon the transplant social worker came by to check in and she thought she had heard mom would be moved Wednesday. So as expected, we’re not sure which day it will be, but it does sound like it will be this week. I’m just pleased that Dr. Moulton felt her lungs were in good enough shape to be moved.

I’m really stunned by the turn around of her attitude. She finally realizes that she can do this. There is light at the end of the tunnel! She told Aunt Carol that during the time frame when she was having massive anxiety and panic attacks, she really didn’t think she’d ever leave the hospital. That she would ever be well again. Oh, how sad! How terrifying! I’m so grateful she’s come to this point where she now knows she’s ok. That there’s just this one last hurdle of rehab and it’s not even scary anymore. What a blessing. So much is happening so quickly. It’s amazing and overwhelming all at once. Can’t wait to hear about tomorrow.

Happy Day

Today was a good day. When I arrived at the hospital, mom was in her chair, awake, talking to Jillian and getting ready to order breakfast. Big difference from yesterday. The first thing she said was, I woke up yesterday and thought, where is she? Then realized I must have gone home because she was sleeping. I said, you were awake, and eating dinner when I left. I said you were more sleep-eating than anything, but we said goodnight to each other. We did? Yes. ha ha. She said I’ve been in the chair since 6am and I’ve been trying to nap all morning, but people keep coming in and doing stuff. Just like last night. Impossible to sleep here. So I let her nap a little, but then Dr. Moulton came in. He thought she looked much better. He asked her how her morning was going and she said she walked all the way to the curtain, which is about 12feet. He was impressed and so was I! This was about two feet farther than yesterday! He said how do you feel about rehab? She said, I can’t believe I’m saying this but I am actually looking forward to it! He said, oh, great, maybe we can get you there tomorrow. She said, well I don’t know if I’m that ready. He said, ok, no hurry. You’ve been here this long, a few days won’t make a difference. I want some more time to monitor your lungs anyway. Maybe by the end of the week. We’ll see. When he left, I asked her what made her change her mind and she said, walking this morning, seeing that I could do it. WOW! Impressive! That’s HUGE! Maybe this will relieve a ton of her stress. I hope. She said she did have some anxiety last night and this morning, but not too bad. Super! Her breakfast came, I told her when I was leaving today and that Aunt Carol would be back in the morning. She said ok. I’m going to rest my head awhile. She was able to get about a two hour nap in. When she woke up we talked more about rehab and I described the rooms and what it was like when we took our tour. She got confused and said when did he go in there? I said who went where? She said, Lee in the hospital. HUH? WHAT? Turns out that her hearing is getting worse and I guess I speak too quickly for her now and she gets confused.

Just before it was time for me to leave, Jillian came in and said, Ok, it’s time to walk. She said, ok! She helped her stand, as that’s a little bit of a struggle, then she used the walker to walk all the way to the door! That’s about 4 feet farther than this morning! She went down, turned around, asked to go back to bed, Jillian said no, it’s daytime, bed is for nights only, so she walked all the way back to the chair, turned around and sat down. I was stunned! It was the coolest thing! We were all clapping. Everyone is so proud of her. I said, you made it look effortless, how did it feel? She said it felt pretty easy! She surprised herself and I could tell she was pleased. She said this morning her legs were pretty shaky, but just then, they were only slightly so. Too cool! She stood so tall and looked straight ahead the whole time. Amazing!

We were talking about the Olympics and how I can’t wait for all the equestrian events and she said, well put the tv on and see if they’re there. That was major progress! Before, she’d been so against the tv because it was just noise and confused her. So we actually watched some swimming events for about 10 minutes. Then I noticed she was trying to sleep so I turned it off. Such good progress

It was a nice way to end my time with her. I got ready to leave and she said, you’re ending our time together short today, aren’t you going to go eat lunch and come back? I said, no because I’m going home. Remember, I have to be home for Malibu’s first day of school tomorrow? Oh, yes, of course. I told her they were expecting me; we had dinner plans. So we said our goodbyes and I felt terrible leaving. I know she felt cheated because even though I’d been there all morning, she slept through most of it. Total bummer. So I left really missing her.

Lee, Malibu and I went to our favorite pizza place for dinner. Then we went swimming. It was a nice relaxing night. Too bad it has to end with us getting up at ungodly hours to go to school. I feel as though we’ve been jipped on our summer together and now it’s time for school already. It seems just the other day that Malibu had only two days of school left when we got “the call”. Now school is starting already. Just too fast. Too unfair. I think I’m just as bummed he has school, as he is! He’s such a good kid. Really mature and has handled it all beautifully. He and Lee have been taking care of each other, living the bachelor life. Although, they’ve actually done a better job than I ever do. They’re eating healthy, trying to exercise (our treadmill broke), keeping the house clean! Wow, guess they don’t need me! Then I remember the big smiling welcome I receive and it’s good to be home!