good news for a change

I have been neglecting the blog. I am completely out of the habit of writing. I have been composing in my head for the last week, but I haven't been able to get myself to start. I suppose it is wonderful. I no longer need a source of daily catharsis. We are insanely busy with hospital(s) for appointments, tests, physiotherapy, and so forth. We are loving on each other in between, and regaining a sense of normalcy and routine. It is so wonderful to share a space together again. 

This will be a brief version of an update, but I will definitely make an effort to get some photographs on here in the next few days. 

James is at physiotherapy three times a week. He continues to build strength and endurance. His determination is as strong as ever. He no longer requires a walking aid to get back and forth from the hospital. We only use the wheelchair for long distances. I continue to watch in complete awe. The changes are nothing short of remarkable.

We also have weekly Transplant Clinic. These are long days at the hospital with a succession of tests, and a lot of waiting around (and that is an understatement). There are no major concerns with James' health. His lung function is at 40%, and should improve with time to completely heal. There are also some pockets of fluid in his lungs that are indicative of months in bed. We expect this will also improve during the recovery process.

James doesn't have an official diagnosis of Diabetes, but it is a very common post-transplant complication (and for individuals with Cystic Fibrosis). We have been going to Diabetes Clinic for education. James is getting comfortable with managing his blood glucose, carbohydrate counting, and administering insulin. We are still hopeful that his blood glucose will decrease with a reduction in his steroids.

We are also being followed by the Cystic Fibrosis Clinic, G.I. Clinic (for Cystic Fibrosis), and by Palliative Care to manage James' medication withdrawal. Our calender is very full, to say the least. We are thrilled. You have to be alive to go to appointments. 

We are lighter in our steps. We are laughing a lot more. It is getting easier by the day. We are moving forward. We still function a single day at a time. We have gratitude for a lifetime. 

home, alas

A: James is home. He came home on Friday night. It has been a long seven months in hospital.

J: I still can't believe I made it.

A: It is absolutely surreal. I wake in the night to look at him. It is amazing to have him home, beside me, and alive. James is alive.

J: I am just happy to be home and sleeping in my own bed.

A: We anticipate challenges ahead of us, but these will pale in comparison to the last few months. James is still very weak, and becomes short of breath on exertion. He has lost a lot of weight in these last few weeks. Nevertheless, it has been amazing to witness James' daily progress. Only a few months ago, James couldn't put on a pair of socks, or move from sitting to standing without needing five minutes to recover. I love watching him move around the apartment without the constraints of oxygen tubing. This is freedom at its best.

J: I am really looking forward to physiotherapy and getting back in the habit of exercising 3 times a week.

A: We will still be at the hospital every day of the week. It will be exhausting, but I am looking forward to the transition back to some form of normalcy. I feel lost amongst the changes, but these are changes that deserve embrace.

J: I love being home.  I don't know what else to say, I am just super happy with how things are going.

A: It is truly unbelievable.

J: Thank you to everyone, including my donor, for all your love and support!

A + J: Love, love, love

discharge from hospital

We have wonderful words to write. Home is no longer an abstract concept of the distant future. James may be home by the end of the week.

There has been a slowing down, and with that, an awareness of a different form of exhaustion. It makes it difficult to write. We are both very emotional with the acknowledgement of memories of the last year in hospitals. It is impossible to process the grief of these last few months. There has been a significant trauma. We will both need time to heal, but in that, James and I look forward to be able to look back on these aches.

The challenge remains to regain weight in the face of on-going nausea and vomiting. James is no stranger to lack of appetite. The threat of force feeding always looms in the background with each gentle encouragement of "one more bite." This is all within the realm and realities of Cystic Fibrosis. These difficulties pale in comparison to the last six months. That perspective allows James to push through the discomforts. 

We held onto hope. It was always on the horizon.

good-bye ICU

James is out of the ICU. We are back on the Transplant Unit. (We skipped the ACU Stepdown Unit). It has been an emotional ride, to say the least. 

What is our next goal? Home. 

We will write more in the coming days. Good night, for now. 

love, love, love.

progress

James is moving mountains again. He is determined to thrive. It was a difficult week with the re-emergence of James' nausea. We have some intermediate resolve with a return to feedings and a bowel routine. We can expect further episodes of gastrointestinal distres, but James will not allow it to impede his recovery process. Here are some highlights from the last few days:

James is no longer on the ventilator during the day and night.

James is "corked" at his tracheostomy site, and breathing on his own (without oxygen support).

James is walking several times a day.

James is walking short distances without a walker.

James is wearing clothes again, and has been able to shower again.

Best of all? James is being discharged from the ICU! We are being transferred to the Transplant Acute Care Unit (Stepdown) on Wednesday.

An Update From James

Dear supporters, James here updating from the hospital. Things have improved dramatically since the last update. I am no longer nauseated, nor am I suffering from dystonia. I am back up to my goal rate of tube feeds, so my nutrition is much better. I am receiving medication through my nasal tube. Adena and I have made trips out of the hospital room with the help of our nurses. My tracheotomy is corked, and I am off the ventilator. I am only on 0.5 litres of oxygen through nasal prongs. I am optimistic and I am looking forward to the coming week. It looks like I am going to be moved to the step down unit where I hope to make further strides towards getting out of the hospital. I am able talk and get dressed without running out of breath. I am wearing real clothes instead of a hospital gown. I am feeling very emotional these days, and although my memory is very spotty, a lot of moments are coming back to me from the previous year is hospital. I am filled with love for my wife and family, and everyone who has helped me to get to this point. Thank you all for reading, and I will keep updating in the future. xoxo, James.

dystonia

It has been difficult to write. I suppose there has been an element of discouragement. There is a sadness that weighs heavily on my shoulders. I want to be able to seek catharsis through writing, but I am reluctant to write without being able to focus on the positive.

The return of James' nausea and vomiting has been very difficult. Everything was put on hold again. James started to move backwards in several regards. He is back on an IV infusion of pain medication. He has not able to get out of bed throughout the episode to participate in physiotherapy. There has also been discussion about TPN following five days without nutrition. This should not detract from his astounding progress, but the nausea and vomiting easily lend themselves to a feeling of endlessness. We desperately want to continue to move forward. We desperately want to be home together.

Yesterday, James and I had hoped to be able to celebrate our first anniversary, but James was still miserable with nausea. There were a lot of difficult and conflicting emotions. We look back on the last year together with gratitude for one another and complete amazement at James' drive to survive. We share a lot of wonderful memories, but also a lot of pain and hurt. There is a lot of trauma in the transplant process. We have lived with ever-constant fears. We continue to live with a shadow of uncertainties. It makes our time all that more precious. It is an important perspective. We cannot take a moment together for granted. Everything can change in an instant, and it does.

Today, James' nausea was seemingly on the path towards resolve, but it was a frightening afternoon. James had a dystonic reaction to a last resort anti-emetic treatment. He has had dystonic episodes in the past to several different anti-emetics, but it was thought that James would be safe with very small doses. It was a mistake. It will never happen again. James' entire body started to shake with incredible muscle spasms and rigid jerks. He arched his back in bed, and started to distort into uncomfortable and repetitive positions. His jaw trembled and threatened dislocation. He had no control over these movements. He pleaded for help over and over again. He squeezed my hand with horrible strength. It took nearly an hour and several doses of Benzatropine and Benadryl to settle.

James also had a tracheotomy change in the late afternoon. This has become a rather routine procedure, but is fraught with its own discomforts and anxieties. James requires high doses of sedation that tend interfere with breathing, and lead to mechanical ventilation again. Nevertheless, James' new tracheotomy should allow for speech. He will also be able to have a swallow assessment. He might be able to eat and drink for the first time in several months. That will be a great reward for all of James' exceptional hard work.

We are completely exhausted (to say the least). Exhaustion takes precedence over writing, and I am going to attempt sleep again. My migraines have returned with full force. I have not had relief for nearly ten days. Sleep is not a guarantee, but it does provide some temporary respite.

nausea again

These are the days to dread. It has been a miserable and long weekend. James' nausea and vomiting returned on Friday night. He has been hugging a basin for three days. I am completely helpless. I watch him tremble and wretch for hours at a time. We have no known cause. We have no solution. It could last for days. It could last for weeks. We are completely helpless. I am too exhausted to write more. I will try to update tomorrow.