Friday, July 22, 2011

My new home...

After a lengthy absence from this site, I have decided to see what thoughts I might be able to share today. This could be long or short depends on my typing and how much I really have to say.

I have been in the hospital since June 1st, and looking back the time has flown by. Although there are many days that crept along and wished the night would come. I never expected on June 1 that my life would lead me here. I guess I thought I would be one of those lucky CFers that would get the call for new lungs while they were basking at home with their rotten lungs. Although I told my nurse that I would have been very upset had I know this was coming.I don't remember the day but I think it was June 14, I had a terrible night of no sleep for the 14th day in a row. I had asked Chris to spend the night because I kept feeling like I couldn't breathe. that morning I woke up for therapy and suddenly my oxygen plummeted, in a matter of minutes I was sidled to the ICU, and from there my memory gets fuzzy. My carbon dioxide had reached an level that was requiring help to bring it back down. But my memory is more of lights and whispers, dark amber glowing lights and waking to find my Dad or brother or husband at my side. What I forgot to mention was that just that seeing them was beauty because just a day or two before I told them all goodbye. I didn't know what entirely was happening but I knew it was important to share my love. To my surprise I made it and to be honest.

Most days are the same, I spend them doing therapy, eating, exercising, doctors visiting, and napping on the ventilator to regulate my CO2. My days are never the same and my nights are never the same either, lack of sleep is one of my problems as is anxiety with each day from staff changes to my feeling good or bad that day.

I am learning to do small things related to my trachea, like changing the cushion, coughing through the hole in my throat, and being extra hands during suction.

I wish these days were consistently easy, and I would feel good from morning to night but it just doesn't happen. More so I wish these new happy lungs would arrive.

Tuesday, July 19, 2011

Finally, another update!

A seven-year old's birthday party, a used car purchase, and visitors from a far away land have all conspired to create a whirlwind and whisk away a week. I arrived back down in Rochester yesterday to re-assume my courtside seats and was greeted by someone who looked another shade closer to the "healthy" Sarah. I know it is a long slow climb, and she has had frustrations and setbacks, but she has steadily moved up that hill to a better place. She is walking short distances without a walker, and last night she walked a very long distance pushing the wheelchair before she had to hop in and let me race her around the hospital.

She did receive some less than fantastic news about the length of time she might expect to wait. Her CF doc was in yesterday, and he has been gone for a while on vacation. She has developed a rapport with him over the years and felt more comfortable asking many of the questions that were preying on her mind. He outlined that she might be waiting some time before the lungs show up. The original timeframe we were told, (3 minutes to 3 weeks!) is really not accurate. She is looking at 3-6 months, with the understanding the match could truly come at any time. It takes some time to recalibrate your mind around that big of a change-- and to realize the room you're in is going to be "yours" for a while. Sarah took the news well and I think is trying to craft her approach to the wait.

She is trying to spend time down the hall at the atrium, exploring places at St. Mary's and she will even (eventually!) be able to go across the street to the Honker for a real dinner out. Her doc has recommended that she start to take charge of her room and her care, moreso than she has so far. I have seen many changes in her activities in just the week that I have been gone. She showers without assistance, walks across the room to grab her pj's, transfers her oxygen lead to the tank to walk, and a dozen little things that last week she couldn't do on her own.

Unlike many patients in the hospital, she does much of her own care. She is hesitant to usurp too much from the nurses and respiratory techs, but as she feels better she will need to take on more of the components she traditionally did at home. This will help her not always be waiting for someone to do her basic vest and nebulizer therapy. She is hesitant to rock the boat as she doesn't want to agitate the people she depends on for so much, especially the respiratory techs. But too often she is the one agitated as each tech who comes in has a different approach and she spends as much time helping some of them understand how to do her meds and therapy as it would take for her to do it herself. This can be repeated with each shift change. (This is not to say anything bad about the techs, as they are just not as familiar with CF patients-- as many of them don't live long enough to be frequent visitors)

Sarah is getting stronger. She is preparing herself for a long wait. Let's hope it is the shorter end of the spectrum.

Eating Out for Dinner

Posted Jul 12, 2011 9:39am
Back in Mpls and derelict in my duties. Sarah has had a few days with more ups than downs. She ate dinner with my parents out in the 'Atrium' just down the hall from her room. Dining out!

She managed to walk half way to the large waiting room with huge windows that overlooks the main entry and out to the west. I think it was a motivator, because she has headed that way a few times now, making it most of the way there on her own power.

The other CF patient on the floor suffered some setbacks and I think it made Sarah realize that is is doing better than she thought. I'm sure it is somewhat strange to know someone is suffering in a similar unique way: unable to communicate on the vent, choking during the suction, struggling with each breath, and just trying to hold on until the lungs arrive.

We found out that it is likely that size of lungs will play a large role in the amount of time Sarah will need to wait. We knew it would play a role, but not sure how much. Because she is smaller in size, it will be necessary that her donor be smaller as well. While this helps us understand the checklist of things that must align, it can still be 5 minutes or 5 weeks.

But for now she is holding steady!

Oops... lost a day

Posted Jul 9, 2011 4:40pm
I had a post yesterday, that I thought I put up. Much to my surprise as I sat down to write this one, and yesterday's was nowhere to be found.

I guess this will have to cover twice as much ground! Sarah is steadily climbing back onto a plateau. They have completely revamped her drug regimen and it has helped her relax and be very active in her care. Little things-- like putting on her own vest, pushing the bedside table out of the way as she stands up, brushing her teeth at the sink-- have resurfaced as routine. She isn't struggling to just sit up in the chair without falling asleep, or just wanting to be asleep rather than dealing with the challenge of the day. This is not to say she doesn't have some wicked downturns in her day, but she now has the 'up' periods to balance it out.

Yesterday was a challenge of wrapping up MA paperwork and making sure her medical coverages are still tracking. It is exhausting to make sure all the i's are dotted and t's are crossed, rather than the other way around. It can be especially difficult when Sarah struggles to clear her mind because of high CO2 levels, drug induced haze, and lack of sleep, on top of having non-stop doc visits and therapy procedures fill her day. Sometimes we get out wires crossed on where to find documents or what information is time sensitive. I can't begin to imagine how someone would do any of this alone!

Yesterday, was the usual rollercoaster, but she walked to the atrium twice and had a nice surprise anniversary gift from Chris. 6-year anniversary gift is either electronics to distract from transplant wait or a diamond trach cover. Sarah can now distract herself with Angry Birds, electronic Sudoku, and Netflix. She was VERY excited to have some new toys to pass the time.

Not much more to share that is different than the other days. Today when I said I should leave before she gets sick of me, she told me it was too late for that. Nice to have her back again. Again.

News and a Photo

Posted Jul 7, 2011 9:52am
Once again, I'm back at home in Mpls. There is little new news to post, Sarah is still having very difficult mornings and better afternoon and evenings. Yesterday afternoon she managed to get outside with Dad to the courtyard and enjoy some fresh air and green surroundings. I think the mobility and change of scenery does her a world of good. I know when we talk about events or chat with the Docs, it is often hard to remember what day of the week it is, or when something happened-- yesterday? two days ago? last week? The room, the view, the food, and the visitors(!) never change, the therapists and nurses change constantly. There is little to mark the passage of one day as different from the next. Perhaps we can begin to explore the grounds to find some new and interesting places to pass the waiting days. As for the visitor portion, many have asked about when/if Sarah will be able to have visitors. At this point she is too up and down to be comfortable with anyone coming up. Additionally, she is at risk for picking up a virus that might jeopardize the transplant, and this just adds to her anxiety. So in the meantime, email, texts or posts she can read are all great ways to communicate with her. I'm posting a picture from yesterday of her outside with Dad. Enjoy.

Tuesday, July 5, 2011

A message from Saran

After a long night again, Sarah found herself up at 2:00. She was wide awake because of a pounding headache. She decided to write a message to everyone.

As I try to find some rest tonight, I want to thanks you all for following my journey, whether from day one of my life or more recently. Your love, support, prayers, and well wishes have been such an important gift during this time.

This has been a very hard road to walk, but I have never walked it alone. To my family and friends, my whole heart swells with thoughts and memories of you. I hope I get to enjoy life's journey with my new lungs. But know the journey to here and with you, new lungs will not erase the beauty of those memories.

Love, Sarah

We met with the Docs again this morning and went over Sarah's concerns and the litany of data they collect. They check the fluids, and top off any that are low. Ask if there are any new aches or pains, clunks or wheezes that are bothering her as she gets up to speed in the morning. She has run out of ways to say she is miserable.

She's frustrated, and tired of waiting. She feels like crap and that is the best she is going to feel until that magical moment where someone unknown and unannounced shows up at her door and says, "let's go!"

But these are all maintenance concerns, so far none rise to the level of crisis and the nurses, the therapists, the docs all say the same thing-- you're doing great, you're working hard, you're in great shape for the transplant.

But too often these last few days, it falls on deaf ears. She has begun to run out of tangible things to grab a hold of for strength. We talked about little things like feeling the sand scrunched between your toes on the beach as the water washes over them, about hopping in the car to go watch Josie and Cooper play ballgames on a Saturday and deciding to stay for a barbeque after-- no vest, no oxygen-- or about her showing up at my door on a Saturday morning for coffee and donuts to continue on the way Mom and Bruce do.

These things, I think, gave her real things that she can and will do before the year is out-- and she could see them and feel them and do them in her mind. Perhaps you all can list a few highly specific tangible things the Sarah you know and love will look forward to doing.

She struggles with the knowledge that someone will need to lose their life for her to continue hers. Everyday I think, please, just let it be today-- then realize the same thing. So with the caveat that I don't want to rush anyone to their demise-- please, let it be soon.

Monday, July 4, 2011

Two images from a few days ago when she moved to the RICU.

A calm night

Finally, a calm night. The yesterday evening, Sarah began to have a bit more energy. My mom brought her a brownie, and Sarah gobbled it down like Cookie Monster goes after his cookies. We laughed how Mom's brownies are so good, even though she'll always say it's just a box mix. Perhaps that little bit of Mom's touch gives them restorative healing properties, but after that she had a bit more determination in her eyes.

She had another issue with her port, which is always a point of concern for her. Her port, for those who don't know, is a small nickel-sized disk under her skin midway down her ribcage on her left side. A tube runs from the disc and discharges near her heart. This allows her to constantly receive medicine, blood, and anything that would normally go in an IV without being stuck a dozen times in each arm. She guards this closely, because it is a pain in the butt to replace it and this is her third one. The other three have clotted off because of mishandling by technicians who weren't familiar with it's use and Sarah blames herself for not speaking up when she felt they were doing it wrong. She won't let that happen again.

However, the port is still good! This lifted her spirits a bit, as the look on her face was was evidence that she was sure it was shot.

She pushed to get on the exercise bike for about 10 minutes before dinner, and then had a good appetite. She had thought she was getting spaghettios for dinner, and was a little disappointed to find the fish/noodles/slab of shoe-leather on her plate. However, she went after the food with a pretty good hunger-- then the nurse showed up with a plate of spaghettios too and she downed those as well. For at least one meal, the appetite was back.

She got a shower in before her evening therapy and I think that helped too. This morning she was digging into breakfast when Dad got up there and the docs were busy visiting her. Food and sleep are the best medicine for her at this point, and it is good to have them back in her repertoire.

After a few days of downer posts, it's nice to have some positives to post!


Posted July 3rd, 2011

Sarah's window looks out on the Generose Building and a quieter part of the St. Mary's campus. However, between the helicopter landing, a car fire last week and occasional oddities, it provides a disproportionate amount of entertainment. Also, our cousin is admitted to Generose, and he is on our minds each time we look out the window.

Last night anyone else looking out the windows on Sarah's side of the building was probably surprised to see someone in a colorful clown wig waving a giant bubble wand, blowing bubbles in the wind.

Those bubbles were for Sarah, and the wearer of the wig was Aunt Peggy visiting her son. Thanks, Peggy. I like to think it injected a little surreality into everyone's evening.

Last night was another tough one for Sarah and we are back to several days in a row of no sleep and it is taking it's toll. Same news, different day.

Further updates as events warrant.

A long day

Posted July 2nd, 2011

Just before I crawled in bed last night, I checked Facebook, only to find a classmate from high school had died. Matt had CF too. He was 5 years post-tx. He picked up an infection two months ago and died of sepsis yesterday. I worried about telling my parents; I still worry about telling Sarah. I knew his death would be a kick in the teeth for them as much as it was for me. Less about the loss of Matt whom I hadn't seen in years, and more about a loss of hope for Sarah. But, there is hope and sadness mixed, and much to learn as well. The immediate lesson is twofold: First from his life. He was married, had two kids (1 & 3) and it sounds like he filled those five years with as much living as he could. The second, from his death. The length of anyone's life is not set, but for Cystics and transplants it is a palpable mortality. Matt's infection did him in, and one of the things that is most difficult post-tx is protecting that new life from assailants that come from every direction. Sarah is already habituating many of the safeguards that she will need to employ post-tx.

Sarah has not been pregnant with a child, but it is unmistakable that she is gestating her new life. I have told her time and time again how the ice chips, the beeping machines, the interminable waiting, her discomfort in her own body, the unbearable swelling of her legs, the constant loss of appetite because her body feels full, and the inability to cool down her body are so reminiscent of going through labor. I spent hours wringing washcloths for Sarah the same way I did for Alana.

Sarah will bring a new life into this world, but it will be her own. She will take a first breath with new lungs; new to her, but not to the world. She will have foals legs and baby steps to look forward to during recovery-- but it will be a brand new life.

Today, for Sarah, has been the same as yesterday with a tiny bit more energy and a little less lightheadedness. She sees sparkles when she looks at things, like when you are about to pass out. I told her it was just Fourth of July fireworks. Blood pressure is low, pulse high, oxygen low-- all indicators of low red blood cell count. So they checked, and sure enough she is at a 7.2 when she should be at a 9. So they gave her a blood transfusion, which is supposed to help all of these things. Tonight was rough as the anxiety is climbing up on her again. She had some issues with her port that were resolved, but she is constantly concerned about it and it just wound her up. The nurse said often additional hemoglobin can induce a deep, deep night sleep. Let's hope. Perhaps tomorrow will be better.

Friday night I crashed your party

Posted Jul 1, 2011 8:15pm

The last two days have been tough for Sarah and have been a bit of a setback. I have resumed my post bedside, so I can now report from the front lines. It has been tough to post anything before now, because we just didn't know where things were headed, or what to think. Is she worse than she was? Yes. Are we back across the hall? No.

Sarah is back on antibiotics as her 'lung butter', as she calls it, is once again harboring evil aliens. It is nothing new, and as one Doc put it, three bacteria survive and a week later you've got three trillion again. When there is as much crap in her lungs and they are in such

She is weak and anxious and her blood pressure is high and her oxygen is low and her pulse is high and then the new drugs make her blood pressure too low and then she is sleepy and has no appetite. She is shedding weight at an alarming rate. So we are worried, and she is worried. But the docs say, if she can get up and move-- she's just gotta hold on and they will transplant her. If she becomes unresponsive or organs start failing then they won't transplant.

According to the Docs, holiday weekends, especially the 4th, tend to produce (ahem) additional donors. If other transplant centers have a surplus, they pass along the goodies that they can't use.

They just gave her some stuff to bring her blood pressure back up, and her lips have color in them again. She is sitting up and interacting with the nurses, so that is good. Lets hope for a good night, and lungs soon.

The rollercoaster that won't stop

Posted Jun 30, 2011 10:52am

Sarah had a very tough day yesterday. New meds, new trach, bad sleep, poor suction, low oxygen-- no one is sure which is the culprit or if they all conspired to lay her low, but they succeeded. She was in a stupor all day and couldn't pull out of it. They are changing around her meds again to try and help. The new trach is smaller, which helps; and causes problems with suction and coughing, which doesn't. They will discuss the option of going back to the old one and the option of taking it out altogether. While this would seem like a great thing, we are all concerned that there might be a rush to get it out, because that's what you would normally do to help someone recover. We have all seen how Sarah got to here and how she has come back in large part due to the vent and (in our non-medical opinion) it is really helping quite a lot with Sarah's stability. We just have to ask the questions and see what the Docs are thinking.

The truth is that we are in a holding pattern and the ups and downs make your head swim. When we were kids, Mom and Trish when on a ferris wheel at the fair. The operator thought they looked like they were having fun, so he sent them around and around again. Mom ended up getting sick. Every day feels like that, only on a rollercoaster. Where there are some straightaways where you can catch your breath, but then it's all crazy ups and downs. We're just trying to keep our head and arms inside the ride at all times, and hopefully the ride will come to a stop soon. (This metaphor makes me think of her new lungs like a bag of pink cotton candy by the ride exit)

I can't even imagine how hard this is for Sarah, when she's fighting for each breath, the drugs make her loopy or sleepy, and she just doesn't know how to keep going. I'm hoping to get the message this morning that she had a good night and things are up again.

In related news, I'll probably never get a text from Mom and Dad again.

Txted Updates.

As you can probably tell, I am back in the 612 and my first-hand accounts of Sarah's days begin to suffer. My stream of information comes in the form of text messages. A fantastic tool, but I end up with small nuggets of 160 characters or less and manic punctuation to decipher like a coded message. This is not to malign the senders (mom and dad!) but it is the nature of the medium. I have to try to interpret the meaning between the words in the same way they have to divine my dropped vowels. Thrs jst alt 2 try 2 get n2 a lttl spce.

A selection of yesterday's updates:

Dad here this morn. No shower because keep getting interrupted. Now resp therapy bfore phy therapy. Maybe after this. Diff med today. Dad knows.

No bleeds. Sleep til 3. Then every hour on hour.

So from that I try to craft a post. It gets really interesting when auto-correct suggests words that completely change the meaning, like when it changed the Canadian Honker to the Canadian hooker! (You parked next to WHAT?) I know a lot of the info in the middle; it was a bad sleeping night, she had to be suctioned from 3 am on each hour, so she is tired and wiped out emotionally as well as physically, but thankfully no new CSI episode.

Yesterday was a tough one for Sarah. Nothing critical, but after her bleed the day before, changing meds and a Monday. Monday involves rounds of new docs, review of approach and the weekend situation, and just a generally busier day. I guess it is a lot easier to say she had a case of the Mondays. A true bad day puts her back across the hall in the other ICU, this one just kinda sucked.

New meds helped with anxiety ('cause it's hard to sleep when you think you might just stop breathing and you focus on each inhale and if it's deep enough and what's-my-oxygen-level-at how-many-breaths-per-minute, and is-my-pulse-racing? Oops! time for the next breath.) After reading other CFer's blogs, anxiety is a constant companion for them at this point in the transplant journey and can be very hard to control.

Her PT session yesterday showed her how much strength and muscle mass she lost in a very short time. They changed out her trach for a smaller model and took out the stitches, but this one cuts off her air a bit more when she is being suctioned-- which she says makes her panic when she tries to pull in that breath and it's just not there.

Today, however, is looking good so far. (Dad called when I texted him for an update, they'll probably never text me back again!) A good night sleep again, and the new meds seem to be helping. Sarah is hoping to put together something to post, if she gets a long enough break from her PT, OT, Resp T, Meds, chance to shower and change clothes. When she sends it, I'll put it up.

Groundhog day

Posted Jun 26, 2011 10:32am

I feel like I keep posting the same thing. Sarah is doing good, bike, shower, walk... and I keep trying to find the next thing or something new that she did today, when I realized it is the same challenge she has. Every day she wakes up and thinks, "today might be the day" and has the same short list of things to do for the day in her room. When hstarts her evening therapies and the lungs haven't come, she goes to sleep thinking maybe before she wakes up. When the morning arrives, she does it all over again.

She said last night that this is one game she can't play everyday. She realizes there is nothing she can do to make the transplant come any faster (short of committing a heinous crime) and it will happen when it does. She is working on figuring out what things give her strength and we are working on surrounding her with those images. It was a nice conversation to have, and one that perhaps we all could benefit from having about our own inspirations and goals.

Her text upon waking this morning was that it felt like Easter and she wished she could put on her dress. The sun shining and a good night's sleep conspired to make her particularly cheerful. I told her we could hide eggs around her room for her to find. I figured it would give her a new challenge.

Finally, a few more thoughts about ways to help and Sarah's post-transplant world. Many have asked about sending flowers, or cards, or doing something nice. As much as she loves them, she can't have flowers in the ICU, and this will be the case post-tx (that's CF lingo-- I'm catching on) as well. Also any cards or mail, should be sent to my parents house so they can be opened for her and she doesn't deal with the envelope that has been handled, sorted, routed, bagged, shipped, and in contact with dust, fungus, germs, etc.

We are all learning the nuance of how to protect her from us, and it is often an odd game. For example, she has to wash bananas in the peel and then wash her hands before she begins eating. Why? Because the outside of the peel is never washed because the fruit is protected. Dust, herbicide, fungicide, insecticide; from jungle to storage to back room of the supermarket, there is a lot of 'stuff' that can accumulate and it gets on your hands when you grab the banana. When did you last think of washing a banana?

So, how to help? First we will be hosting a fundraiser toward the end of the summer/early fall. I will post more as we get things planned and this will help her with cost of living expenses as she recovers from the transplant and won't be able to work. The first 100 days post-tx are considered critical to recovery and she will have many restrictions to her life through that period.

Second, we are bringing her little treats from outside to augment her meals when she feels up to it: smoothies, coffee drinks, malts, fries, really anything high calorie, big comfort that she requests. If you really want to send something in lieu of flowers, send a gift card. Otherwise, I'll have the account set up soon for donations and that will be the other way to help.

Our mantra is, it's a marathon not a sprint. We keep trying to use that mindset to approach the weeks to come. Thanks for cheering along the route!

Big smiles and bright days

Posted Jun 25, 2011 12:22pm

I walked into Sarah's room yesterday and saw a completely different person than I left on Tuesday afternoon. She was busy doing things sitting on the edge of her bed; dressed, corked and ready to go. She got up and paced around organizing some of her things. I met her current nurse, and watched her interact and direct the nurse about what she needed, her plans for the afternoon and thoughts and directions on her medication. She was in charge and in control of her domain.

She had plans to get outside to the courtyard and had taken a shower earlier in the day. She told me that she had discovered things about switching between vents and corked that make it easier to exercise and walk around. We sat outside for about an hour in the courtyard on a glorious summer day and I think it gave her a nice break from the inside of a hospital room.

Later in the day, the nurse (who also works in post-transplant sometimes) was coaching her on trach maintenance and ways she will be able to take care of things herself-- like coughing stuff out the trach rather than her mouth or using suction and that she will be able to suction herself when she is ready. The next time she had to cough, she was already implementing things herself.

Each of these little steps have added up to some pretty big changes, but it is still frustrating to her that she has lost so much. Standing at the sink, brushing her own teeth before bed-- she was irritated that she was so out of breath and that such a simple event took so much effort. It is a double edged sword. She knows she needs to give herself credit for coming so far, from laying at death's doorstep one week ago to being mad that standing and brushing her teeth is a challenge. That frustration, though, is what will fuel the fire inside that keeps her going.

The talk of 'going home' is done for now. They told her if she ever gets to the point that she comes and asks to go, they will be able to get her there, but no one is going to tell her it is time for her to leave.

Her focus is on reaching her transplant, and because that is not a fixed point in time it is hard to know how to wrap her mind around it. If you knew that sometime between the next minute and next month, a person would walk up to you and say, "Ok, time to go get hit by a car, hope you survive, and then go through recovery," how would you deal? I'm not sure it is possible to find the right way to wrap your brain around that.

She has been reading the posts herself and has enjoyed all of them. It means a lot to her to have the support and love of so many, and she asked me to pass along her deepest gratitude. She will not be able to have visitors now or for quite some time after the transplant, so this a great way for her hear from all the people who love and support her.

There are so many small facets of life that will have to change for her with the transplant and she is trying to implement them now to make them her new default. She won't be able to eat at most restaurants, or eat food prepared by others unless she knows a strict list of precautions in preparation have been followed, she'll have to avoid shaking hands or touching doorknobs without immediately washing hands, hugs and kisses will be few and far between, and she will often need to wear a mask in public or anytime she visits the doctors office. Her immune system will be suppressed, so anything that can make her sick, scratch her skin, or be a origin point for infection needs to be avoided at all costs. A cold can put her back where she is right now. All these things will be a constant challenge and will replace the religion of her vest and nebs 3 times a day.

But, all in all really great progress. Just waiting for that person to walk in the room, and the world to go boom.

From the no news is good news department

Posted Jun 23, 2011 9:34pm

My return to full time stay-at-home status with the kids in summer break mode in Mpls has made posting updates more of a challenge than I would have hoped. So here is the catch-up post.

Sarah has had an ebb and flow to the last couple of days, but for the most part stayed fairly stable. She has done well with challenging herself: showers, walking, riding the bike, hours off the ventilator. She has also had some trying times, and can't seem to get past some pretty severe exhaustion. But the truth is that she had 20% lung function when she was 'healthy' and surely that has decreased with the latest episode making recovery more of a task than if she had better lungs. She also had a bleed in her lungs yesterday, which because of the trach sprays out all over, evidently making the equivalent of a CSI crime scene. Obviously, this can be very troubling to her level of comfort, as she is just trying to get out of crisis mode and back to 'normal'.

They have talked of getting her back to her life, and that has been good and bad. The escapism of TV, movies, music, and art are all very useful distractions for helping her pass the time and forget she is in an ICU unit. The Recreational Therapist stopped by and helped her get started with some painting yesterday, thus validating her 'I paint' comment from the other day. However, the discussion of possibly getting her out and back home has come up again and is not a helpful conversation at this point.

I think she has seen every kind of therapist they have at the hospital: respiratory, occupational, physical, recreational, etc. I might just put on scrubs, walk around with a bunch of plants and call myself a landscape therapist just to see if anyone bats an eye.

I will try and be better about updates, and perhaps when I get back down to Rochester tomorrow I can get her set up to post something herself. Wouldn't that be a treat!

Steady as she goes

Posted Jun 21, 2011 4:20pm

Sarah is adapting to her new environment quite well. She is still exhausting herself by doing the little things, but that is a positive step as well. She spent almost 3 hours off the ventilator this morning as she was taken for a video swallowing test. I asked if she wanted to post it to you tube, but the silence that followed was deafening. She did, however, pass with flying colors, which is good because as she stood up at the edge of bed her feeding tube slid straight up through her nose and onto the floor. No pull, no catch, just 'shluuup' there it went! (Well, that was easy to remove. Much better than the catheter!)

While not exactly what everyone had in mind-- her comment was, "well it was starting to hurt, and now it will be easier to swallow." Which says a lot considering she was obsessively counting calories since last fall for the opposite reason that others count them.

When they took the ventilator off, they 'corked' the trach and she was able to speak. I think her voice even surprised her at first. It was nice to hear her talking, though it was a bit shaky at first.

We found out that she will most likely remain here for a while and they will work on strength and managing until the transplant. I think the doc was trying to boost her spirits when said she might even be able to go home with a portable vent-- but I think it scared the crap out of her instead. She saw her transplant position evaporate just like that. But it wasn't so, he just wanted to give her a glimmer of hope-- guess that backfired!

I'm headed up to visit her in a bit, and I will try to post again later.

Busy day yesterday, smartphone problems today

Posted Jun 21, 2011 9:24am

I will try to post a short update, as I am experiencing technical difficulties - please stand by.

Sarah is doing quite well. Busy day yesterday. After a good night sleep, she was up in the chair for a big chunk of time. 10:30ish to 4pm. She was then moved to a new room in the Respitory ICU. The new locale will enable her to be more active and better able to regain some strength. She also has much more space here. There is a loveseat and a recliner, and still room for the nurses to move around us to give care- the last room was half the size of this one. If it was a hotel, they'd advertise this as a kitchenette!

She slept well again last night in her new digs, and is now asking questions like, what are the limitations of this trach? and And what are my goals? And when can I wear pants? These are nice to hear. She is taking charge and that is a good sign. Whoo hoo!

To sleep, perchance to dream...

Posted Jun 20, 2011 1:47am

Some pretty good milestones today. Sarah got to drink water, then juice after the water went down ok. She spent the majority of the day with her eyes wide open, and interacting with everyone. Not only did she take her first steps since moving up to the deluxe spa room, she walked the length of the ICU desk and back. Overachiever.

Tomorrow, she may be moved to respiratory ICU, which is more geared toward maintaing status quo on the rest of her body while she is in here waiting. The weekday team and her CF nurse angel Vicki will be in, and I would guess we'll see the development of a game plan for the waiting game

Every nurse shift comments about how small her current room is, so perhaps she'll get the double superdeluxe spa room next. As a modification of Grandma Siebenaler's quote about being happy with the tiniest amount of space in heaven, we're just pleased she is still occupying the little room in Mary Brigh.

We are not out of the woods by a longshot, but let's call it a clearing where we can get our bearings, and one can see the sun peeking through. And for now, she is asleep.

An uphill climb

Posted Jun 19, 2011 9:34am

After another 'good' night, Sarah's eyes were bright this morning. She slept for about 4.5 hours uninterrupted. That is the longest stretch of sleep she has had since she was admitted. I'm exhausted just thinking about that.

We have managed to get some of the worries off her mind, and perhaps sorted with the staff in the ICU. It is so difficult for her, after more than a decade of listening to her body and administering her own care in response at home, to let others be in charge of those actions. Hopefully, those watchful eyes can rest a bit easier.

We talked this morning for a while, and she told me how bone-tired she feels. I think this will be her greatest challenge, as she waits for the new lungs. Not knowing the hours or the days makes it hard to steel yourself for the journey. I think if we can find other benchmarks for her to work towards: a shower, a wheelchair ride, the beautiful view from the waiting room. Having some simple things that will take her mind off each breath for a while would be salve for a different ache.

She asked me to read the postings again last night, so keep them coming. They are a window to her life outside of tubes and traches, and help lift her spirits.

Upright Sarah Brigade

Posted Jun 18, 2011 6:53pm

The positives: Sarah was off the ventilator for a big chunk of time today. She sat upright in her chair for about an hour. They have taken her off the sedative/painkiller she had been on since intubation. They have taken out several of the extra IV lines so she is less tied down.

So those are all great accomplishments. However she exhausted herself and is sound asleep. She has been so hot for the last few days they have started keeping ice packs on her body. For all the times that she froze at home and at work this last winter, it seems an odd punishment for her to suddenly be so uncomfortably hot. She is back to being aware of every beep and action going on around her. She has spent her life managing every detail of her vest, nebs, and medicine that she is constantly tracking her nurses and caregivers. It's a good thing, but makes her anxious if they seem to do it differently or are at all unfamiliar with the procedures.

Let's hope for another good nights sleep.

Just like the old days

Sarah was awake for a while this evening. For about 90 minutes she asked me to just tell her about my day and wrote to ask about other news that came up. She was thrilled to be able to have ice chips and told me she was starving. We joked a bunch and caught up on things I knew she would want to know. She smiled many, many times because I tell stupid jokes- but it was almost like a normal visit with my sister (and tens of thousands of dollars of medical equipment.) She looked a bit tired so I helped her get comfortable and she went to sleep. It was fantastic to watch.

Sleepy, sore, but more comfortable

Posted Jun 17, 2011 8:58pm

Sarah is coming out of the anesthesia and seems to be much more comfortable with the tube out of her throat. She is still quite groggy and floats in and out. But when she is awake, she is quick with the pen to ask questions and tell us what she needs. Kai peeked in and blew a kiss from the hallway and Sarah blew one back. Her nieces and nephews are a big source of strength for her and her eyes had a sparkle when she saw him. The surgeon was positive about the surgery and there is talk of moving her to a different part of the ICU so they can focus on some physical therapy.

She was lucid enough that I read her most of the messages that have been posted so far, and they brought lots of smiles. Several made me tear up, but she is patient with me :)

We are on constant alert for the transplant call. As one doc put it to the other one, "keep the batphone handy!". So watch the sky for the bat sign. If you squint, it really does look a lot like a pair of lungs.


Recovery and a photo

Posted Jun 17, 2011 5:14pm

Sarah is back in her room from surgery. I am waiting at home with Kai to get the information from the docs about what the next steps are and what to expect, but I know they felt it went well. We'll see this evening how much activity they will allow her to do, but Dr. Wylem wanted her up and moving around as soon as possible. They don't want her to lose any muscle capacity while she waits for the transplant. I told her he wanted her to run a 5k and she smiled-- she knows how strongly he feels about keeping active. She takes the continued exercise pretty seriously and will even use her resistance bands while she lays there and can do nothing else. When I know more I will post it.

About the photo-- When Sarah arrived in the ICU she had Tricia take a picture of her attached to all the machines. She wanted it posted on her blog to help document her journey. She has used others' stories (blogs, videos, discussion boards) as a way to understand the challenges and set her expectations. Her blog is a way of paying that forward to those who will walk a similar path. She was adamant about showing the hard parts, as she knows showing and explaining them help reduce the fear and anxiety that other patients will have. Leave it to her, again, to be thinking of how she can help others while she is in desperate need herself.

More tonight when we hear from the docs.

Surgery Day

Just a quick post this morning, as it will likely be a long day for Sarah and will present many changes. She is to go in for the trach surgery around 10 am and it should take a little over 2 hours. She had a restless night again and only got sleep in smaller chunks. The tube in her throat is obviously bothering her, and they had to decrease her sedation to prepare for the operation. This caused her to feel the discomfort more often and wake up about every 45 mins. They would give her a burst of drugs that would knock her out, but she'd be up the next hour. She is ready for the surgery, and I don't think morning could come soon enough for her.

Mom, Dad, Chris, and Tricia are up there after relieving me early this morning. They will meet with the Docs on rounds and the ENT Doc doing the procedure, as well as an update from the Transplant Team. When I hear more, I will post the info.


Another Glimmer

Posted Jun 16, 2011 2:09pm

Another day, another plan. This morning we met with every different doctor to discuss the next few steps. Nutrition, ENT, Floor Docs, Transplant Docs-- you name it.

The current schedule has Sarah undergoing surgery for the trach tomorrow morning. Our experience so far tells us that the schedule might be more fluid than that. They will not be doing the stomach tube, nor the sinus surgery right now. They feel those operations are luxuries at this point and don't want to rock the boat. Additionally, they feel like the transplant is so imminent, they want to avoid any possible complications. One of her transplant Docs made the comment that it could be one to two weeks for lungs-- but of course no one knows. We are cautiously optimistic that things are stable and perhaps we have reached the nadir.

Sarah was awake a few times this morning and was able to write some small notes. She wanted to know what day it was and if her doctor had been in. When I told her about the surgery schedule, she asked if that would allow her to talk, as she is unable to do so with the tube down her throat. The nurse explained it might take some time, but I told her she wouldn't be sedated so she could write more easily. Her response was, "I paint." Even intubated and barely conscious she was still cracking jokes. That's a great sign.


Sleeping Beauty

Posted Jun 16, 2011 5:50am

Sarah is sedated and sleeping peacefully for the first time in 2 weeks. It's a starting point. She will go in for her trach, a stomach tube, and her sinus surgery today- most likely this afternoon.

A bit of good news awaited me this morning as I arrived, she has tested negative for RSV. It is a nasty little virus that is often responsible for making kids pretty sick. Grae had it several years ago, and her little playmate was briefly hospitalized for it. If it had come back positive, she would have been off the transplant list until it cleared. There is another CF'er in the ICU awaiting a transplant who does have it, and will have to wait. So we'll rejoice in a small victory.

Sarah would be the first to point out that the other young woman is in worse shape, has a rarer blood type, and her parents have already lost her brother to CF. There is always someone who has a tougher path and it's important to keep that perspective. Sarah is in tough shape, but not without hope.

More later,

A bit more

Posted Jun 15, 2011 8:39pm

I can't begin to say thank you enough to everyone. The outpouring of support and love has been just wonderful. Many have asked what they can do to help us beyond messages and prayers.

The tough part is that this might only be the beginning. We could be in a holding pattern for weeks and then have the transplant, which is a whole new set of challenges where we will REALLY need all the help and support-- especially after weathering this current storm.

Just know it means the world to us to have such wonderfully caring friends and family. It is a testament to Sarah and how much she means to everyone. When we figure out where we are in this process and how we can use the help, we'll take you all up on the offer.

Thanks and much love,

Another Setback

Posted Jun 15, 2011 5:07pm

Things aren't going well. The doctors are concerned that she is too exhausted and just can't keep fighting on her own. She just keeps losing ground.

They have decided to intubate her in preperation for a tracheostomy. The trach will help her not have to be sedated for too long. While we know this is the next step in the progression of treatment to bridge her to the transplant, it is also the start of us being unable to communicate with her clearly. We all had to say 'goodbye' with the hope that we will see her again in a couple of days.

She is still fighting, but embracing the help of the machines to get her through this struggle. She welcomed the chance to let go of some of the stress and labor. She was positive and shared that if she doesn't come through her life has been a wonderful journey-- one that she hopes to continue if it is in the plan.

I don't want to paint a bleak picture, but she is running out of options to help her. The positive is that the doctors are still operating on the guiding purpose of getting her to the transplant. One doctor said they did a lung transplant last night of a different blood type-- had it been a match, it is likely this would have been a much different post.

Thanks for all your support. Sarah appreciates the postings, as do we.

More soon.


ICU Day 2

June 15th, 2011

I got up here at 4 to relieve my dad. Sarah had been asleep for a couple longer stretches through the night and that is good news. She has had almost 2 weeks without a good night's sleep and it has taken a toll.

The BiPAP machine is helping but she struggles not to fight it. It does the best work when she is asleep as it can take over for her completely. She woke shortly after 4 and wanted a break from it, so she went back on the standard oxygen mask. However, she can't relax because she is constantly worried she is not breathing enough (as has been the case several nights) and her oxygen levels will drop. Her levels seemed to be steady even without the BiPAP and when reassured she went back to sleep.

They are in now drawing blood (2nd time already this morning!) to see if her blood gasses have leveled out. Hopefully, we get some good news today.

Thanks for the lovely comments. I have passed a few along to help relax her anxious mind and they have helped. Sometimes when every breath is a chore and the world is needles, machines, and harsh lights a little love and reminder of life outside is great medicine itself.


Where to begin?

June 14th, 2011

We thought we might lose Sarah yesterday. We weren't too sure about today either. She is very ill. The last two weeks in the hospital have been a constant game of one step forward and two steps back. She has been unable to eat, unable to sleep, and unable to breathe-- not a sustainable combo.

Yesterday, they realized her CO2 levels in her blood were causing her severe headaches and the readings were very high. Not yet dangerously high, but trending that way. If they got much higher, her organs could begin to shut down. This morning those levels had increased further and they moved her to the ICU.

She is now on a BiPAP machine that helps her breathe. It basically acts the same as a ventilator without having to be intubated. This way when she is wearing it and especially when she sleeps it will do the work for her and continue to remove the CO2 from her blood. If all goes according to plan her levels will normalize by tomorrow.

She is additionally slated for surgery in one week to put in a feeding tube and clean out her sinuses. Part of this is pre-transplant and has been planned for a while. More on the tube later. The expectation now is that she will be in the hospital at a minimum until that surgery occurs.

She has been moved up on the transplant list. If the donor is a match for blood type and antibodies, she will go in immediately. It could be hours, days, weeks-- but it will likely be much sooner than we had initially anticipated.

Tomorrow we hope to have an idea of where we are headed. The doctors are positive about how she is doing. As they have said, on paper she is healthier than the day she was admitted.

I'll add more when I can, or if I think of more that I forgot to include. Just know that she is tough and fighting as much as she can-- but she is tired, very tired. Every breath is labor for her and she said sometimes she feels as if she is being suffocated. She has said she just doesn't know how much fight she has left in her. She needs this ICU visit to help and the machine to give her respite.

Send your love her way. She needs all the extra strength she can get. We will read your postings to her.


Straight Postin.

So, I have been unable to post here much as I have been using up my words on the Care Pages. Saran's goal was to share her journey through the transplant process, and document it in the hopes it would help others as well.

So I am going to cut-n-paste my posts from her Care Pages over to her blog to preserve the continuity of the narrative as we move to transplant. I'll try to keep the dates with the posts so they'll make sense.