Monday, March 02, 2009

Hospital week#4 and unexpected silver linings

Hospital Week#4
....and unexpected Silver Linings

Lent is most definitely in the air around here as my husband awoke to the alarm clock at 5am this morning, knowing what lay ahead. He would be leaving his family again to participate in week#4 as an in-patient for his respiratory rehabilitation program.

As usual he wasn't looking forward to being decontaminated before entering the actual program facility where he would arrive just in time for breakfast and the daily routine schedule rundown. He would be the first to tell you how long the weeks have been while being away from home, how tough the program is but with everything imaginable, he would also admit to recently finding a silver lining amidst the struggles.

Last night as he repacked his suitcase, and gathered his things, he remarked in jest at the growing shrine-like of items located around the bathroom taps on his side of the countertop. Yes, each week our young daughter blesses him with her sweetness and an entire collection is now gathering there.

(Psst - What he doesn't know is a package will be waiting for him at the hospital today with much more sweetness from our grandchildren and there will be more to come to get his room all decorated this week.)

One of the most frequent questions I've been asked recently is; "What is the purpose of this respiratory rehabilitation program and how will it benefit your husband?" Out of simplicity, my answer would include four basic points overall;

  • Improve breathing
  • Increase exercise tolerance
  • Teach and instruct particulars of lung diseases
  • Help a patient cope with their condition

The amount of staff it takes to run the program is impressive! To date my husband works with two respiratory doctors and a team of six physiotherapists and one of them is assigned to him personally as head chief of his case. A team of occupational therapists rotate shifts with several educational classes held each day on his schedule offering ways to conserve energy while performing everyday functions inside of the mock apartment at the hospital. It is there where he learns and truly has come to appreciate the many tips and hints offered to save him from the usual fatigue from normal tasks. Each weekend I witness something new as he incorporates things at home and I can already attest to the extreme benefits offered for the patient.

For instance, instead of ending up ultra fatigued after standing to shave each morning, he now opens up the cupboards under the bathroom sink, places a chair there and sits to shave. After a recommendation came from the therapist, he also pulled out and dusted off his electric shaver for those mornings when keeping his arms up in the air becomes all too much for him, and he realizes the benefits of conserving his energy.

Other benefits are; practicing ways to conserve energy while cooking in the kitchen, making a bed, washing a window, storing things in cupboards for easier functionality, and so forth. In fact there is an actual binder filled manual he uses during these sessions, so much more to learn in the weeks to come. It all sounds so easy to someone like you or I but believe me, it soon becomes an awakening for the patient struggling while attempting to appear and maintain normalcy with everyday issues.

Stair climbing efforts continue (this pic is from last year).

Another example; one thing he has to correct was his dread of stair climbing...again. Not only has he had to learn to climb them in a whole new way by stopping on every third step for just a second to take a breath of air to expand his lungs as necessary, he realized last week how much he detested stairs due to all of his experiences collapsing at the top from exhaustion. It dawned on him he had grown into the bad habit of holding his breath all the way up instead of breathing at regular intervals, rather than have anyone notice the difficulty involved for him to perform this task. Holding one's breath only makes it worse, feel faint, require recovery at the top, and so since then, I see him stop on every third step and actually take a moment to do what he's been taught. It is something so incredibly simple, the momentary rest factor that is, grabbing that air intact to continue, so practising these tips are now providing hope for him along the way to be something akin to "normal" in this task.

Two weeks ago, reality hit my husband's hospital room after all were witness to one roommate being denied the possibility of a lung transplant due to ineligibility from having two heart attacks and a heart stent in place. He was also denied the lung reduction operation he moved here from the Maritimes for, the only thing that can offer him a better quality of life with the advanced stages of emphysema destroying his lungs. With extreme emotion at the helm, he made a decision to sign legal waiver papers insisting on having the risky life saving operation for a lung reduction anyway, and doctors entered his name on the surgery board this past Monday morning to operate on him. My husband and the other patients were completely thrown off more than once when reality hit hard, leaving them to also ponder their own future medical fate when someday they too will have to make lifesaving decisions and sign legal forms like this man had to do in front of them. Happily though with a strained voice, he called to tell me he had learned his roommate not only lived through the risky operation that day, he was recovering well and will be returning to his hospital within the week. It was all too close to home for all of us, and this man has really been on our heart.

When this man left to have his surgery, obviously another patient was admitted to my husband's room. Not only has he been terribly obnoxious but even in his degenerative lung diseased state, he insisted on chain smoking at every opportunity beforehand and entered the room on day one reeking like a disgusting ashtray. Nurses were swift in making the patients leave their room though the timing was terrible being right at their afternoon rest time. She opened up all the windows to air out the room, sent the culprit to the shower, changed and disinfected all of his bedding and confiscated all of his clothing to the laundry. The rules must be followed. No scents are allowed as they are wild triggers for lung disease patients, so this guy sent everyone into a tizzy with the disrespect he offered upon his entry into the program.

Nurses eventually slapped not one, but two nicotine patches on his multi tattooed arms, and banned him from smoking for the duration of the program. They seem to reprimand him daily over other areas of rebelliousness where he loses civility and disrupts his roommate's well needed sleep. Mostly it is media issues with noise from husky and loudly voiced telephone calls at inopportune times, and his TV or radio blaring without ear buds in his ears. Daily naptimes last week were filled with sounds of the Rolling Stones "I can't get no satisfaction" tune over and over again at ridiculously high decibels, leaving very much dissatisfied other roommates in the same room, all snowballing to the point of exhaustion after obviously becoming severely sleep deprived several days in a row. Today after fulfilling a well needed recovery at home all weekend with naps and many hours of nightly sleep, my husband returned knowing he and the other two patients were being moved to another room.

Have you ever had to literally fight for your life performing each day on a program based on a rigid and scheduled twelve hour day where no one else was involved, no children were near to worry about or have to tend to, the only prerequisite was for you to work on your own health and wellness? This respiratory rehabilitation program has been a Godsend. If however my hubby had known before hand what he would be doing while there, perhaps he may not have agreed to participate. It is often incredibly intense, often seriously gruelling and physically draining hour to hour. Sleep plays a major role in the daily schedule for all the patients living there, so yes, they need some satisfaction for enabling that area of their lives each day to become the best it can possibly be, sea-peps or oxygen white noise included for many.

The rehabilitation team has been marvellous thus far and the individualized and personalized schedule seems to keep changing and evolving with additional items entered along the way. Overall every single day becomes very busy and I know my husband remarked many times on how exhausted he was the first week, ready to call it a night by 7pm. By the end of week#3 he was pleased to report he could handle some evenings until 9pm depending on the outcome of the day. Still in all the zeal for the program, he was tempted to quit twice last week because the emotional part or physical exhaustion sent him for a loop and often got in the way of remembering the benefits to the program.

This is one of the devices he was supposed to use, but last summer he began to panic while using it and stopped. It has returned to his daily routine and he must avoid the panic that accompanies it.

The day to day routine has become ritualistic while in hospital though and as I mentioned it continues to evolve with additional items to keep it interesting. His regular day includes breakfast by 7:45am. followed by a one hour "breathing technique" class which builds and stretches the lungs out. Sometimes they use devices such as a spyrometer, other times just the practise of diaphragm building breathing movements. Next up is 1 ½ hours of physiotherapy, 1 ½ hours three times each week of occupational therapy and then it's a well deserved lunch followed by a rest for a few minutes only. During this time he has no problem fitting in a power nap and finds it refreshing to do so. After his siesta, it's onward to another 1 ½ hours of physiotherapy with harder intensity training. Twice each week a 45 minute upper body weight training session has been inserted into his week and during the hour long breathing exercises in the afternoon session, they've added in some tai chi to offer motion therapy by breathing in with a movement and breathing out with its return. I teased him about being prepped for the next Karate Kid movie - wax on, wax off....brush up, brush down- same thing he said too as we both giggled about it.

Ten days ago he was introduced to a team of medical students intent on finding several patients to perform walking tests on and gathering data for the study back at their university school. Of course my husband has always agreed to participate in these, why not? Back home in the west he drove to the University of British Columbia several times each year to help out in respiratory study sessions there, lunch always included as gratitude for him joining in. Here now in the hospital, twice weekly he performs 3- 16 minute walking tests while hooked up and followed to a monitoring system by the students. It's very tiring for him, but it is becoming exciting to think of how much stronger he is becoming with everything there when his muscle system had been failing him previously to this course!

Intent on getting as strong as possible for his own future operation, the entire program staff is very pleased with his motivation and growing determination to exceed because at the end of the program those working hard and finding success are also acknowledged as "Graduates". As difficult as it becomes, it's a good goal to keep in mind to celebrate the sacrificial challenge it has become for our family at the end of it all. And with plenty of testing of various sorts outside of the program in other hospitals each week (CT scans, Rheumatology, etc...), we are looking forward to their results very shortly.

Cheeky guy - he had to show the camera both back and front views of his swim suit.

Last night as my hubby packed up his suitcase, gathered his medications and assembled his toiletry bag, he then searched for his bathing suit. Twice each week they will now have him enter a swimming pool to walk with and against a rolling current wave system to the rhythm of a chronometer (sp?) beating loudly nearby. His main physiotherapist has deducted after only ten minutes of this type of exercise, he will need 1 ½ hours to recover. She has rearranged his schedule to place an occupational therapy educational class and rest afterwards so he can sit and become partially immobile for a time.

The entire staff is comprised of many building on their reputation for this program. Besides the obvious twice each week my husband meets with a nutritionist to become more educated on selecting the best foods for optimal macro foods to offer better digestion and keep from the burning reflex and heartburn that plagues every person suffering from a lung disease. She also suggests ways to incorporate the Canada food guide for choosing the best foods with nutritional content and after discovering his love of cooking, she offered many assorted tips for easier and quicker meal preparation to get him off of his feet sooner while in the kitchen. I roared with laughter when my husband was first offered to select his week#2 meals, choosing to have an apple crisp every evening for his dinner dessert before Lent began. I would poke fun and tell him this was most definitely beginning to sound like a Club Med for sure (medical).

And a silver lining comes by the weekend when my husband declares the planned and well thought out meals he will be making for the family. Yes, that's right. He loves to cook. And if there is one thing the rest of the family marvels over, it would be my husband's discovery of the "Food Channel" on his hospital TV screen. His afternoon break comes just at the right time as the 4pm program, where Michael the cook dazzles his audience with his superb kitchen creations.

My husband has begun to WOW us with his newfound culinary skills. This weekend was something else! Not only has he found and began to utilize ways to conserve energy in the kitchen, he practiced making poached eggs using the vinegar tip from his cooking shows. He presented gourmet sandwiches to bring along to the hockey game, and our breakfast Sunday morning equalled to a five star restaurant's presentation.


He had rave reviews from the family consumption of this meal!

He insisted we shop for fresh rosemary and mushrooms this weekend because he was intent on making a special stuffing to sit inside of a fresh turkey breast. In the end after not finding one he thought looked enticing enough to purchase, he chose beef instead. Along with realizing the need and delegating to helpers, he had assistance in meal making all weekend also providing garlic mashed potatoes and veggies. Oh, and it was Sunday, the day within Lent where we've developed a tradition of sorts to have a pie for dessert, so guess what he served for a little dessert after this scrumptious meal? Did you guess? It was apple crumble pie with a dollop of vanilla ice cream.

Sneaking in a funny...he protected his clothing like a chef by donning *my* apron below... snicker, snicker.

All of the patients in the program meet several times each week with a panel of social workers where they are also taught the importance of support systems, ensuring the health and welfare of the caregiver, the mental and emotional needs of the patient as the lung continue to degenerate, the spiritual side to all, becoming a Graduate of the program and volunteering to coach the next class of new patients in the program and more.

**I suppose the big bomb this past week was twofold. My hubby must follow continued bimonthly assessments after the completion of the program where all graduates will meet afterwards for a support group meeting. But, subsequent to this program, my husband (and all) must become inpatients every year for 3-6 weeks to refresh themselves to the program continually. The news hit me like a full blow, but then, rationality entered my brain and heart once more and I realized this is all good. It will be easier next time, knowing what he does and how the program works. Yes, he must revisit it all again next year and every year after for literally the rest of his life. There is great meaning to this commitment for our family, confirming our decision to move closer to this whole general area three months ago. Wow! God is good! He knew just what we needed to do all along..... and knew in time we would respond to the call to get a move on.

Our verse...yea baby!

So I apologize for this long winded post today, but there have been so many questions with inquiries into the topics above and I hope I've satisfied you all with good answers.

As we stand at the threshold of week#4 for my husband's respiratory rehabilitation in-patient hospital program, my hope and prayer will be has a much better and productive and week after resting up all weekend at home. Sneakily my heart is singing a bit today because as I have not yet been able to travel to the hospital as I would like to, knowing during the day I would be interrupting his valuable scheduling, however this week marks our 32nd wedding anniversary and I have decided to make a surprise visit one evening to whisk him away for a bit of memorable time alone together. Yes indeed, a midweek date will be just what we will both need to get through yet another week apart! I am praying for good weather to make it all possible....

Happy Anniversary to us!