Thursday, January 31, 2013

and the nausea continues

We are on day five of nausea and vomiting. I wish there was more to write about, (or at least, more positives). There is some discouragement and disappointment, but James and I both know that it will pass, despite all the discomforts and misery. Every day is still another accomplishment; a day closer to transplant. We have to stay focused on that goal. We will get there. We have to get there.

These nausea and vomiting episodes slow the pace of time in the hospital. Respite comes in the form of sleep. James sleeps on and off throughout the day, between discarded basins, and cold washcloths. I sit and knit, and listen to James' laboured breath, and watch for the rise and fall of his chest. There is a peacefulness to these moments. 

I love to hold James' hands in my own, and comfort him with back rubs. I wish there was more that I could do to ease his pain and discomfort. I know that my presence brings him a sense of security, but that doesn't seem to be enough. I remind him often that he is surrounded by love. We are grateful for all the prayers. We will get through this. We have to get through this.

Monday, January 28, 2013

long days in hospital

It was a rough day, but I still feel as though James is genuinely doing a lot better, or in the least, making improvements almost every day. The nausea and vomiting comes in waves. We truly have no choice but to function one day at a time, or rather from one hour to the next. A very positive morning can be followed by a miserable afternoon, and nauseous morning can be followed by a lovely afternoon. 

Today, James woke with another nausea and vomiting episode, and with hopes that it would subside by the afternoon. Unfortunately, a second wave arrived in time for physiotherapy, and James spent the rest of the afternoon curled up in a ball and hugging a basin (with his wife by his side to rub his back and cuddle him). 

A lot of the frustrations comes with the uncertainties, and of course, a lack of known cause for these episodes. It seems to correlate with James' low lung function, and often follows several days of (relatively) good eating. It is possible that his body simply cannot handle digestion at this point. It requires more energy than is available, because the majority of James' energy requirements go towards breathing. He has no appetite and no interest in food or eating. He motivates himself to eat out of necessity, but the difficulties remain.

We ended the day on a positive note with an escape from his bedroom to the hospital lobby. We played a game of Settlers of Catan, shared a few laughs, and were able to create our own space together (in separation from the disease). I can't even begin to express the value of these moments. Our time is more previous than ever before (and that includes all the difficult moments too).  

Sunday, January 27, 2013

morning nausea

It is Sunday morning, and I am watching James try to sleep away the nausea. He is making an attempt to fall asleep to the background noise of snoring on one side, and blaring television and concerning cough across the room. These are the wonders and joys of a ward room. 

Nausea always bring disappointment, but it doesn't negate the accomplishments of the previous days. It was a wonderful week of small improvements. These gains are essential in the face of possible deterioration. The fear is always there; lung disease is notoriously progressive. Even the smallest of movements towards improvements in health status warrant recognition and celebration. James has been able to eat solid foods for the last few days, take several walks each day (without oxygen), and has been gradually gaining weight. These accomplishments lift our spirits. James' misery at a long-term hospitalization has been replaced with a sense of hope for a second transplant. 

We have now surpassed James' post-transplant hospitalization in length. It has been over a month in the hospital. The complications in securing funding for James' Total Parenteral Nutrition (TPN) feedings remain. There are a lot of politics (and that is without the additional factor of being an out-of-province patient). The Transplant Team and TPN Team have been very clear that it is not safe to discharge James without a solid nutritional plan. This would need to include feedings (in some form) to supplement James' minimal intake. James' gastrointestinal difficulties are further complicated by the previous failure of a g-tube, and Cystic Fibrosis-related pancreatic insufficiency (leading to malabsorption and impaired motility). These are the realities of Cystic Fibrosis and end-stage lung disease. We are fortunate and grateful that James' lung status remain stable at 12%. 

In the time it has taken me to write these paragraphs, James has been able to fall asleep (despite the musical of bodily sounds from his roommates). I will allow him to rest without the pressure of medications and exercise. Updates to follow, but for now, love, love, and more love.

Thursday, January 24, 2013

escape from reality

We have been thoroughly enjoying our daily escapes from the hospital. The rather unpleasant accommodations of a hospital ward room are reason enough to desire a change in scenery. It is lovely to be able to share in our own private space. We still have our morning routine. I arrive at the hospital with a thermos of tea, or rather, some tea to go with James' sugar and cream. James wakes up slowly to take his medications and prepare for the day ahead. He has physiotherapy in the afternoon three times a week, but otherwise, James and I brace ourselves for the cold, and head across the street to our little apartment. (We still go home for a few hours on physiotherapy days, but without the leisure of an entire day to ourselves). 

Ophelia prances around the apartment, and James and I collapse into bed to sleep the day away. I've become entirely unproductive around the house. My chores take several days to even reach a point of consideration, but it is completely worth a long afternoon sleep with my husband. Nights are long in his absence. We both have been missing the company of a warm body at night (for snuggling purposes, of course). These afternoon naps have become a dream to look forward to on sleepless nights. 

We both find our spirits are lifted by these hours home together. There is no ambition to do anything more than simply be together. The hardest part of the day is returning to the hospital, and once again, leaving James for the night.

James is slowly re-gaining weight with a little more solids each day to eat. He is also rebuilding his strength. He is able to walk further distances, and be active and awake for longer periods of time. These are incredible feats for a man with twelve percent lung function. There are limitations to his energy, because of weakness and faitgue, but there is always motivation to keep pushing through the breathlessness. It amazes me. I know, I know, I am always gushing with pride. It is hard not to be proud.

It has been a few weeks since I have written about gratitude. With that, I am grateful (in no particular order, and certainly, a non-exclusive list):
I am grateful for access to universal health care.
I am grateful for access to and availability of healthy food and clean water.
I am grateful for a warm and safe shelter.
I am grateful for the small comforts of home. 
I am grateful for Ophelia (my feline companion).
I am grateful for the ability to experience and feel happiness.
I am grateful for the ability to experience and feel love.
I am grateful for strength and motivation (both my own, and James' enduring fight to survive).
I am grateful for friendships (and the embrace and support of the transplant and Cystic Fibrosis communities).
I am grateful for James' organ donor and organ donor family. (James is 20 months post-transplant. We cherish each and every day that is possible because of this courageous and generous act of organ donation).
I am grateful for James.
I am grateful for gratitude. 

Wednesday, January 23, 2013

photos before bed

I am feeling the exhaustion of the day. I will make an attempt to update during the day tomorrow, but for now, I will leave you with some photographs from the last few days.
(a misleading headline. we need lungs!)

Monday, January 21, 2013

another day over and done

We had a very positive day today. I'm insanely proud of James in every respect. 

We started the day with a warm tea and morning cuddles. James had been in and out of sleep for the last few hours. This is very common with various early morning intrusions of pokes and prods. The doctors arrived at a reasonable hour with a disappointing consensus that James will need to remain in the hospital for at least a few more days. Discharge discussions and decision-making seem to be on hold. It is essential to determine a long-term nutritional plan that takes into account James' variable daily intake and gastrointestinal issues, and includes Total Parenteral Nutrition (TPN) as a prime source of nutrition. Of course, out-of-province funding further complicates the situation. 

James woke slowly with his computer as a companion. I escaped for an hour with some very dear friends from within our ever-growing transplant "family". These social excursions ease the isolation of the transplant process. I allow laughter to replace the loneliness. We completely understand each other. I feel a level of embrace and acceptance that has always been foreign to me. My expressions of gratitude will never be enough here. We never have to feel alone. We never are alone. 

James walked to the Transplant Gym for the first time in months. That's right, James walked to the Transplant Gym. Can you see my grin? I am aglow. This is an incredible feat for someone with serious limitations of breathlessness and fatigue. A precedence has been set. I will have to get some streamers for his walker.

In the afternoon, James was relocated from his o-so-private room to a ward room in the company of three other patients. We made the immediate decision to escape the hospital. It was absolutely wonderful to be home with James for a few hours. Ophelia pranced around the apartment with a playfulness that could only be attributed to a complete happiness and joy at James' presence. (I refute all accusations of anthropomorphism). I made a chicken soup, and James relished in the comforts of home. It was a sweet reminder of the relative normalcy of our lives out of the hospital (and a bitter tease to return back to a loud and crowded hospital room). The room change is less than ideal, but James will continue to cope with the same incredible strength and endurance.

Did I mention that I was proud of him? 

James is a superhero. 

Saturday, January 19, 2013

how is James? a day in the hospital

This is a surprisingly difficult question to answer. I wish there were a simple answer. The days in the hospital are monotonous and mind-numbingly slow. We always seem to be waiting; for a doctor, a test, or another hour to pass. James and I create our own structure and routine. We mark the small improvements and accomplishments of the passing days. We acknowledge the gains of each additional hour spent out of bed, or a few independent steps in the hallways (sans oxygen). Every sip of a Resource supplement warrants a celebration. These gains may seem meaningless, but each step represents movement towards the direction of discharge. Lung disease may be progressive, but James refuses to allow himself to deteriorate within the areas of his control. I know that every bite of food takes effort, and every minute out of bed is banked in hours of sleep, but James continues to endure. We may fall apart on a regular basis, but I'm insanely proud of his heroic push to maintain (and even improve) his health status.

Every morning, I wake to an internal alarm and start my day slowly with cat cuddles and a protein-rich breakfast. The warmth of my bed is a lure in the morning, and a reward at the end of the day. No amount of sleep seems to resolve my fatigue (and it is never easy to leave a cat curled by your side). I stumble through my routine, clear the dishes from the sink and drying rack, and boil the kettle for Jamie's tea. James' tea is a morning staple loaded with enough sugar and cream to make any morning delightful. My caffeine cravings begin with his brew. A month in hospital would create a coffee addict out of the best of us. I depend on the cold morning air and a brisk walk to the hospital to get me through the first part of the day, but by early afternoon, I'll be walking in my near sleep to the Starbucks for a daily dose of caffeine.

I arrive at the hospital either to find James bent over a basin, or ready to indulge his own caffeine addiction. The difference will determine the rest of the day. The rare appearance of another episode of nausea and vomiting is always fraught with fears of more days on end in hospital hugging a basin. James has had enough basin bonding to last a lifetime. (It has been an enduring relationship. That is some serious commitment). Fortunately, James has been having fewer episodes.
I take a few minutes aside to clean and organize the room, and scavenge James' breakfast tray for edibles. The room is often littered with empty packages of no longer sterile bandages and wipes from midnight glucose readings and early morning blood draws. The activities of the day are concentrated between the early hour of five and seven in the morning. It is a fury of nurses in and out of the room for vital signs, weights, and several rounds of medications. James has been in a light sleep for hours. He braces himself for the bright overhead lights. We share anecdotes of the night, fragments of dreams, and assurances that there were a decent quantity of cat cuddles for both of us. 

The waiting is soon to begin. Did I not mention that the hospital is one perpetual wait?

James will move to sit in a chair for the morning, and I often stretch out on the bed. We snack on fresh fruit, and at James request, I seek out a Tim Horton's for muffins or soup. James will disappear into his laptop, and resurface to share music, news and videos. I knit and knit (and knit) with music in the background. I eventually become restless and determine an appropriate time to disappear for a coffee (always weighing the possibilities that I will miss the appearance of a doctor or specialist). We move through the day at a snail's pace (and that is an understatement).
We are both ready to return to bed by the time lunch arrives (or rather, a foul-smelling tray that resembles something edible in colour and texture, but is more often than not, a test of stomach strength). We salvage the fresh fruit and vegetables, apple juice, and condiments for our stash. This is definitely not the Cystic Fibrosis ward at St. Michael's hospital. The chips and chocolate bars will have to come from our own budget. 

James has physiotherapy in the Transplant Gym three times a week in the early afternoon. This is a delightful exercise (pun-intended) of co-ordination between a wheelchair, oxygen tank, and IV pole. We laugh a lot, and manage through the bumps and bruises. James' determination at the Transplant Gym really is a testament to his determination and strength. He has become very weak and short of breath from the last month in hospital, but James always completes his routine. He pushes through the discomfort, with breaks to rest and listen to his body, and with that, is re-building strength and endurance. 
He earns a long nap in the afternoon, and I often return home for a few hours. This is my opportunity to do house chores, grocery shopping, laundry, and so forth. I am also trying to follow through on my commitment to get back into exercise on a regular basis. We touch base in the late afternoon, and I often make dinner to bring back to the hospital. We watch shows in the evening, and play various games. (My Scrabble skills are improving each and every day).

We procrastinate to say good night and wish each other the sweetest of sweet dreams. Some nights I fall asleep on a cot beside his bed, but I eventually find my way back across the street to a very demanding feline. (My long absences in the day have become a source of distress. Ophelia has become very vocal in expressing her discontent).

That is a novel of a blog post. I'll end it here (for now):

Wednesday, January 16, 2013

making it through

James is, in his words, miserable. This extended hospital stay is wearing him down. He is longing is for the comforts and privacies of being at home. The feelings of fatigue and weakness, along with limited mobility, translate further into a sense of confinement. His sadness and discouragement are completely valid. It has been nearly three weeks in the hospital. It would be hard for anyone to hold onto hope (and hope is hard to come by in the hospital). We are trying to stay positive, and I do everything that I can to lift his spirits. It is difficult to feel as though we are moving forward, or least, in the direction of discharge, without a discharge plan, and with all these building uncertainties. The hospital is one long perpetual wait.

We also have to come to terms with the progressive realities of lung disease. Each and very change to James' independence requires a shift in thinking, or rather a re-framing of the circumstances. We have to rediscover and redefine a sense of normalcy. We have to learn to accept the difficult changes and make a continuous and conscious effort to recognize the small reasons for gratitude. The later can be a challenge, but is essential for getting through the hard days.

James has every right to be feeling down. I'm proud of him for every effort he makes to push himself to feel better, and to make the most out of, well, miserable circumstances. He truly is focusing on everything that is within our control. He is sitting up more often, and even walking around the unit with a walker and oxygen. He always tries to greet me with a smile. We know that these are temporary conditions. It will get better. It has to.

Saturday, January 12, 2013

Well, it looks as though the transplant team may be making a liar out of me. The transplant team is advocating for James' discharge, because of the risks of remaining in hospital, including hospital-acquired pneumonia or other pathogens that roam these halls. The TPN team is responsible for the suggestion that James will remain in hospital for a few more weeks, but it seems as though there has not been communication between the two teams (in regard to James' discharge plan, that is). Wouldn't that be nice? It comes down to a risk versus benefits argument for keeping James in hospital. Do the benefits of remaining in the hospital for weight gain outweigh the risks that are associated with hospitalization and immunosuppression? It is a difficult question to answer, because James' nutritional status is an essential component of transplantation. The ideal solution would be discharge with an order for TPN at home. This remains unattainable without provincial coverage from British Columbia for extended care in the home environment. We cycle back to the beginning of the conversation. A decision will have to be made at some point. 

For now, James has rather limited mobility in the hospital, with an IV pole always by his side, and the dangers of leaving his room and contracting an infection. He sleeps a lot, and forces himself to eat between naps. I am concerned that James may become increasingly weak with muscle loss from remaining in bed all day. He has been going to the Transplant Gym three times a week, but that has its own limitations (and frustrations), because of James' muscle fatigue and his budding relationship with an IV pole. He still has that incredible determination to push himself through the essential parts of the exercise routine, but it may not be enough. The possibility of pulmonary rehabilitation was mentioned among the doctors today, but that too, has its own complications as an out-of-province patient. 

I've hit the late afternoon wall, and I am too exhausted to even complete sentences in my head. In short, James and I are coping as well as can be expected, and moving forward in most respects (or at least, in the areas of most importance). That's all for now. 

 love. love. love.

Thursday, January 10, 2013

updates from the never-ending hospital stay

Today, James was the centre of attention to an audience of ten doctors. He certainly makes for an interesting case study in both Cystic Fibrosis and lung transplant. We learned that James may be in the hospital for a few more weeks. He is still holding out for hope that it could be only a week (or less, of course). The goal is to determine James' energy needs for weight gain through TPN. It could take a few weeks to slowly continue to increase the calories to that level and to transition from 24 hour feeds to 12 hour (overnight) feeds. There is some disappointment at the thought of remaining in hospital even a minute longer, but James is prepared to do everything necessary to optimize his health for transplant. This may also allow time for the hospital to contact the Ministry of Health in British Columbia to request funding for TPN at home. 

For now, James' lung health appears to be relatively stable and holding steady at 12%. He is maintaining his weight in the same range with some normal variation in both directions. He had a rough morning with the return of a short-lived bout of nausea and vomiting, but James has gotten comfortable hugging a basin with the knowledge that the discomfort is a temporary condition. Once the medications start to work, he is ready for his routine tea-sipping and cookies.

I packed up my bedside cot at the realization that it is not feasible for me to sleep at the hospital with James for weeks. We will both have to learn to sleep in the absence of one another. I know Ophelia will definitely not protest either the return of my company or the spare room in bed. She loves to sleep on a pillow by my head (and wake me in the night with kisses and kneading). 

I am feeling very grateful for my extended transplant "family" here at the hospital. I've always considered myself to be rather shy, and socially awkward, to some extent, but I have been embraced by a wonderful group of caring individuals. There is an immediate connection with a sense of reciprocal understanding that can only arise from shared circumstance and firsthand experiences. We come from a range of different backgrounds, but that doesn't seem to prevent the building of bonds. There is no reason to ever feel alone; spare those late night encounters with an irrational loneliness, that is. 

We are coping exactly as would be expected given the circumstances. (That is my standard response these days). Our exhaustion remains. There are days that perpetual fatigue can weigh heavily on our moods, but James and I rarely remain low for any length of time. We seem to balance each other out, and lift each other up during moments of need. There has always been a lot more laughter than tears between us. That being said, I think that teary nights allow for the intimacy of shared emotions. The hard moments serve as a reminder of our love and gratitude for an ever-present shoulder to cry on. Those difficult nights reinforce our promise to always be there for each other. We get each other through it all. We will continue to get each other through it all.

Wednesday, January 9, 2013

hospital and waiting for transplant

James is still in the hospital, but he looks a lot better, doesn't he? He feels ready for discharge (and has had his mind set on discharge since early this week), but it seems as though a few more nights won't make a significant difference after such an extended admission. I also scored myself a hospital grade cot to keep him company at night. We both felt a sense of calm waking up next to each other this morning. Nearness brings comfort and security.

We keep ourselves busy on the computer, linking between articles and forums, watching ridiculous videos, and more serious online documentaries. We draw together (on occasion) and read out loud to each other before bed. We listen to our favourite podcasts and allow ourselves to drift into a restless sleep (preparing ourselves for the next interruption).  

It is hard to believe that we have only been on the transplant list for two months (and in Toronto for four months). The wait seems unbearably long, and to some extent, a lot longer than during James' first transplant process. Perhaps, it is the on-going need to re-frame our thoughts and feelings with the constant changes in James' health status. James is a lot more fragile. We also no longer have an illusion of transplant as a cure. We recognize on a very deep level that transplant is the exchange of one set of problems with another. We are prepared to go through the process again, and it is worth every day that James is still alive and breathing. We simultaneously work towards a future together and focus on making it through each and every day with as much optimism as possible. Some days are a lot harder than others, but James and I share a determination to get through this together. We long for that post-transplant glow; it is that feeling that anything in the world is possible. We hold out for hope that we will be on the other side again.

Tuesday, January 8, 2013

James here

Adena: Let's blog together.

James: I guess.

Adena: Where should we start? How are you feeling?

J: I'm feeling like I have been in here forever. I'm ready to go home and sleep in my own bed. I also miss the cat. I'm sick of having IVs and being attached to a machine. I just want to go home and rest. Hospital is somehow not restful.

A: Hospitals are definitely not conducive with the aspects of healing that require rest. The speakers come on in every room at least every hour, nurses shine flashlights in your face on a regular basis, and the early hours of the morning are, according to James, torture. This is apparently the ideal time for lab work, vital signs, and general poking and prodding.

J: I'm just a lump here. I am in a zombie-like mental state. I just want to go home and start over.

A: There appears to be a theme. We are really hoping that James will be discharged in the next day or so. His nausea and vomiting have settled for now, but there seems to be a delay, because of the need to secure funding for James' TPN, or in the least, formulate a nutrition plan for the short-term. This is the part of the blog that I return to James and he reiterates his desire to be back home.

J: That's about it.

A: Did I mention that the apartment is freezing cold? Our thermostat is broken. Several units in the building are without heat. We were given small space heaters, but the fuse keeps blowing with use. Instead, Ophelia and I burrow together under layers of blankets, and wish for another warm body in bed with us. (Cue James and "I want to go home").

J: I want to go home.       

Friday, January 4, 2013

gratitude and acceptance (and hospital update, take three)

James is ever so patiently tolerating the hospital experience. The long nights in hospital can lend themselves to some negative thoughts and feelings, but James is always sunshine in the morning. We both tend to leave our fears to late at night. It seems that loneliness begs the attention of our deepest emotions and allows sadness to make an appearance. We can spare a few tears here and there, but James and I take these moments as reminders to spend the days in fun and laughter. 

I am learning a lot about acceptance. It allows me to move forward with a lot more confidence in the present and for the future. It is almost a form of faith. We do not allow our fears to control our decisions. We move forward together with a focus on everything that is within our control. We are doing everything right, both for ourselves, and for each other; by ourselves and together. 

I write a lot about gratitude. We find gratitude for the perspective of our circumstance, rather than for the limitations of our circumstance. We do not take for granted our time together. We can be honest with ourselves about the realities of transplant, and still close our eyes at night without regrets. We find value in the important aspects of our lives. I fall more and more in love with James each and every day. He wrote me a card with a similar profession. There is something special here to protect. 

As for a health update, James started total parenteral nutrition (TPN) last night for supplemental nutrition through his portacath. There is a relief in knowing that James' nutritional needs are being met. This is currently a short-term solution for during hospitalizations. James may not be able to obtain coverage for extended care at home, because of the cross-province health care agreement that only allows for out of province acute care, rather than in home care (or chronic care). This is frustrating for a number of different reasons, but for the most part, I feel it is essential to optimize James' health status (including nutrition status) for transplant. This should be a shared goal with the Transplant Team, but of course, I also understand that there are limited available health resources (and it is certainly not ideal for James to remain in hospital). The fact that these are unprecedented circumstances doesn't negate the need to address the issues. We will work with the social workers on finding a solution prior to discharge. I will never be done advocating for James. 

James also went to the Transplant Gym for physiotherapy in the afternoon (and showed off his fancy shmancy IV pole). He completely amazes me with his ability to push through the discomforts of being in hospital, and continue towards the goal of transplant. He did a series of stretches and strength exercises, along with ten minutes of cardiovascular exercise on a stationary bicycle. He was exhausted (and nursing a headache), but still managed to get through the basic workout. That's some serious determination. Let's also take into consideration the fact that James has been in a hospital bed since Christmas. I'm insanely proud of him. Can you tell?

Wednesday, January 2, 2013

hospital update, again.

This would be the second post of the day. The first post was actually a scheduled post to acknowledge our six months anniversary, because it is important to celebrate the months these days. It may seem unnecessary (and silly, to some extent), but I am reminded of being post-transplant. At first, James counted the days. This slowly became weeks and months, and eventually, a year. o, how wonderful is was to be 1 year post-transplant. As James' health started to decline again, James and I returned to counting months and weeks post-transplant. This was not a conscious decision. We find reasons to celebrate, because James and I need these small victories to note the passage of time. Our world moves at a slow pace. Our lives are on hold. It is not easy to wait for transplant. These celebrations remind us to focus on living (rather than the alternative). We continue to move forward. It is essential to our survival. 

James seems to be genuinely recovering from this nausea and vomiting episode. We requested a combination of dextrose and saline to give James some energy (instead of the normal saline that has been hydrating him for the last few days). It seems to have made a difference. James has been able to keep down clear liquids and is ready to try solids for dinner tonight. 

A referral for total parenteral nutrition is also in the works, because James' weight loss is substantial enough to be a cause for concern. This is a frustrating and painful decision, because James works really hard to maintain his weight with 3000 to 3500 calories a day (and that is without supplemental nutritional shakes or beverages). In the first year post-transplant, James gained from 88lbs to 133lbs. It hurts to watch that weight disappear, but it can take up to a week (or longer) for James' eating to normalize post-hospitalizations, and with inpatient stays almost every two to three weeks, James is at risk of becoming malnourished. He is already clinically underweight and it really has become nearly impossible for him to recover lost weight from frequent hospitalizations. This is not for lack of effort. His body expends a lot of energy simply to breathe, and digestion requires even more energy to gain any benefit at all from his diet. We will do everything that we need for him to be as healthy as possible for transplant and post-transplant recovery. 

six months anniversary!

I am forever grateful that I was able to marry the love of my life. It has been a difficult few months, but in many ways, it has also been the best months of my life, because I have James to hold my hand. I am grateful for every single day that James and I are able to open our eyes in the morning, and find each other by our sides. I am grateful for every shared moment of laughter and tears. I am grateful for each and every breath that allows for more of these moments together. I am grateful for the depth of my emotions, and the comforts and securities of this o so special love. I am grateful for James.

It is important to find reasons to celebrate (and with James, it is not hard to find those reasons):

Tuesday, January 1, 2013

hospital update

Holidays are slow at the hospital. All expectations for tests, appointments, and referrals are on hold for a few more days, and with that, James may be in the hospital for a few more days. He is recovering at his own pace, starting to take in fluids and solids, but not enough to be granted a discharge pass. We will need need a nutrition plan in place to get James back on track with packing in the calories, and for supplemental nutrition during these frequent hospitalizations. James works really hard to maintain his weight at home, but it is becoming increasingly difficult with these nausea and vomiting episodes. Nonetheless, I don't think he will be able to escape the Transplant Gym tomorrow, inpatient or not. Exercise is all too important (and a natural appetite stimulant). We are also waiting on another home oxygen assessment, because James' blood oxygen saturation continues to decrease on exertion. All that being said, James is in good spirits, and the trend is definitely towards recovery and improvement. We don't feel a lot of worry or concern, because our focus is on getting through the days with as much positive energy as possible. We are fortunate to be surrounded by a wonderful transplant community, or rather, a transplant family. There is a lot of love and warmth all around us (and that is an understatement).

Last night, James and I both curled up in James' hospital bed, fell asleep holding hands, and discretely broke the "no overnight" rule (with the indirect permission of the nurse that closed the lights and curtains, and wished us a "good night"). Neither of us manage a lot of sleep during these hospitalizations. We were in agreement that we would rather be awake and together than wide-eyed and longing for each other. We both had a better night with the company of one another. It is clear that the nearness of loved ones are an essential part of healing (for both of us, that is). 

I came home for a few hours in the morning to find Ophelia in distress at my overnight absence. She was meowing and meowing (and meowing) while climbing all over me and licking my face. She proceeded to protest my overnight with James by following me from room to room and repeating this demand for affection and attention. She is now curled up by my side, asleep and content, with a false reassurance that I am staying home. I will be returning to the hospital in twenty minutes or so, but I cannot imagine spending another night. Ophelia has been very adaptable to all these transitions and changes, but it feels cruel to leave her alone for more than a single night. James and I are both so grateful to have a feline friend with us in Toronto. We could not have left her behind. With that, James went to bed last night wishing for his Bombay; a cat that would happily sleep under the covers in James' hospital room for days at a time.

Edit: I spoke too soon, or rather, I wrote too soon. In the short hour that I was gone from the hospital, James started to feel sick again. I returned to find him hugging a basin. I will write more soon, but for now, James needs a hand on his back.