Retired Prof. Mechanical Engineer in Ontario

MY DRESSING SUPPLIES FOR PEG TUBE STOMINA
BY: PC Ellis March 18, 2009
1. Medicom 2 in x 2 in all gauze sponges, 100 % cotton, 12 ply REF NO. 3002, http://www.medicom.ca
2. Dukal non-sterile gauze sponges, 2 in x 2 in.- 12 ply Ref no. 2128 http://www.dukal.com Dukal Corp. % Plant Ave., Hauppauge, NY 11788, tel no 631-6563800
3. Dukal 4 in x 4 in non sterile gauze sponges, 100% cotton – 8 ply Ref No. 4084 same as above info
4. TopplerSterile Drain Swabs 3 in by 3 in Ref No M12507 Made by Johnson & Johnson
5. Flexi-trak Anchoring device for catheters and tubes, 1-1/2 in by 4 in Ref No 0003-0374-40 Made by ConvaTec, Montreal , Qc 1-800-465-6302 Numero de commande 37449
6. Hypafix 5 cm by 10 m low allergy dressing retention sheet (tape) Ref No 71443-01 made by BSN medical GmbH in Hamburg, Germany
7. Micropore Surgical Tape 1 in by 10 yd Hypoallergenic Ref no 1530-1 Made by 3M Health Care, St.Paul, MN 55144-1000 USA 1-800-228-3957
8. Non-Sterile Cotton Tipped Aplicators, 3 in wood shaft
9. 500 ml Baxter 0.9 % Sodium Choride Irrigation solution Ref No JF7633 Made by Baxter Corp., Toronto Ontario

MY ENTERAL FEEDING SUPPLIES Mar 17, 2009 BY Peter C Ellis
1. COMPAT 1000 ml Vinyl Gravity Feed Bag with preattached Enternal Delivery Gravity tubing . Ref No 199216 MADE BY NESTLES at http://www.nestlenutrition.com/us Toll free no 1-877-DEVICE-8. Covered by Ontario ADP.
2. KENDALL KANGAROO 1000 ml Vinyl Gravity Feed Bag with preattached Enteral gravity feed tubing, ref no. 8884702500 MADE BY TYCO Healthcare Group, Mansfield, MA Toll free no 1-800-962-9888 at http://www.tycohealthcare.com. Covered by Ontario ADP.
3. COMPAT: 500 ml rigid feeding container with preattached Enteral gravity delivery tubing Ref no 8884702500 Made by NOVARTIS Nutrition Corporation in Minnepolis , Min., USA DISCONTINUED IN CANADA but still can be purchased in the USA at my expense
4. 60 ML KENDALL Syringe with tip cap ref no 1186000777 MADE BY TYCO Healthcare Group, Mansfield, MA Toll free no 1-800-962-9888 at http://www.tycohealthcare.com. Covered by Ontario ADP.
5. KENDALL Female lock connector tip for 60 ml syringe, ref no. 275008 MADE BY TYCO Healthcare Group, Mansfield, MA Toll free no 1-800-962-9888 at http://www.tycohealthcare.com. Covered by Ontario ADP.
6. 35 ML KENDALL Monoject Syringe with catheter tip. Ref no 1183500888 MADE BY TYCO Healthcare Group, Mansfield, MA Toll free no 1-800-962-9888 at http://www.tycohealthcare.com. Covered by Ontario ADP.
7. KENDALL ENTRISTAR (Y ADAPTER) PEG ENTERAL CONNECTOR, Ref No 8884-752042 MADE BY TYCO Healthcare Group, Mansfield, MA Toll free no 1-800-962-9888 at http://www.tycohealthcare.com.. Covered by Ontario ADP.
8. COMPAT Universal Y Port Adapter with Stretch-Lok Strap Ref No 087503 Made by NOVARTIS Nutrition Corporation in Minnepolis , Min., USA DISCONTINUED IN CANADA but still can be purchased in the USA at my expense
9. KENDALL KANGAROO Y-Site Extension Set Ref No. 8884705008 MADE BY TYCO Healthcare Group, Mansfield, MA Toll free no 1-800-962-9888 at http://www.tycohealthcare.com Covered by Ontario ADP.

ADP: Ontario Assistive Devices Program

SUMMARY of RESULTS of LUNG CT SCAN on Dec 3 at QCH Feb 28, 2009
As told to me by Dr.E Kyrillos at The Family Medicine Clinic on Feb 20, 2009
GENERAL:
1 There is a cyst at the apex of segments 5 and 6 of the liver. The remainder of liver is unremarkable.
2 At the upper pole of right Kidney, there is a 1.9 cm lesion
3 In left lower lobe there is a 5 mm nodular density
4 In right lower lobe, there is a irregular speculated 1.2 cm mass and adjacent to this is a 6 mm nodule
OPINION :
There are 2 new irregular masses in lower lobe of right lung that were not present in prior CT Scan of July, 2008. Could be related to a typical infection such as MAI, However Neoplasm in not excluded therefore follow up CT Scan is recommended in 3 months (March)
Ultrasound test on right kidney is recommended to check or confirm that the lesion is not a solid renal mass
BATERIA FROM SPUTEM SAMPLE on Feb 20, 2009 revealed bacteria called PSEUDOMONAS AERUGINOSA
This bacteria can only be treated with five different antibiotics according to Dr Kyrillos
Was prescribed APO-CIPROFLOX 750 MG or Ciprofloxacin HCL 750 MG om Fed 26.
FOLLOW UP APPOINTMENT with DR E Kyrilos is to be made after next CT Scan and Ultrasound test on right kidney.

QCHospital Stay from Dec 7 to Dec 11, 2008
Peter C Ellis
DIAGNOSIS : Infection in Right lung by chest X-Ray on Dec 7/08 or ASPIRATION PNEUMONIA
Taken by ambulance from my home to hospital early Sunday morning.
ADMITTED by Dr. S. Morrin, M.D.,F.R.C.P.(C) Internal Medicine, Hematology on Monday after spending day and night in Emergency. Was discharged on Thursday.
OXYGEN Was on oxygen for 4 days. O2 level on admittance was 88 % and when I left was 92 % while on oxygen O2 levels were 97 %
Took blood sample from artery to see if I was eligible for home oxygen and the respiratory therapist in hospital advised me not to have it at home.
CHEST XRAY in hospital on Dec 8
ANTIBIOTIC: 750 mgs of LEVAQUIN once daily in morning for 15 days total including 5 days in hospital
PHYSIOTHERAPY: Had chest physio to help me cough up and will have more treatments as an outpatient to teach my wife how to do this.
SPUTUM : Abundance of thick stringy white froth and very little yellow mucus
LUNG HYGIENE at home: Steam vaporizer with acapella
FOLLOWUP CT SCAN Ordered by Dr j Lemelin and was done on Dec 3 at QCH
Previous one was on July 18th at General Hospital. Have not been told results of it.
DIETITIAN REFERRAL I want to be referred to Bernice Wood, dietitian of ParaMed at 613-728-7080. Who has looked after me since I first had my Peg Rube installed 2-3/4 years ago.
Since hospitalization , I made a decision not to have anything orally again. Everything will go through my PEG Tube ie Vitamins, all medicines and all nourishment.
I am taking in 1800 calories a day or six cans a day. I am really suppose to have 2100 calories a day. I have lost 10 pounds since hospitalization.
I have decided to not to take anything orally as before: pint of beer, Aero dark chocolate bar because I have had 2 pneumonia within 6 months of each other.
MOUTH HYGEINE: Saw Speech language pathologist in hospital and she stressed good oral hygiene. Brushing my teeth twice a day and scraping my tongue. : Had bed side swallowing test in hospital
SPUTUM COLOUR Green. PLEASE test my sputum for infection.

Last April 25, 2008 I had chest x-rays done and was prescribed antibiotics for seven days because I could hardly breathe and was coughing up yellow and green mucus. I was told to puff my ventolin four times daily for 3 days , 2 puffs per treatment or 8 puffs per day as well as take my spiriva once daily and flovent twice daily. Now I am coughing up only yellow mucus. Green mucus is a sign of infection and I had a very low grade fever for one and a half weeks.

Last fall from Nov. 2007 to Jan 2008 I had 3 months of physio at the Rehabilitation Centre, together mixed with some lung education regarding the Anatomy of our Breathing and COPD Disease Management. Articles on these subjects have been posted below for your reference.

 

 

 

 

 

 

3-BRONCHOSPASM

 

 

                                                                        *** Wait at least 1 to 2 minutes

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

*** Wait at

 

least 1 to 2 minutes between each puff of medication

*** If you are taking both bronchodilator and steroid puffers, take your fast acting

bronchodilator first, then wait 10 to 15 minutes before you take the steroid

 

SIDE EFFECTS of BRONCHODILATORS:

-        increased heart rate, trembling, jitteryfeeling

 

AEROCHAMBER

For all of your inhaler medications (Metered dose inhalers), you should be using an aerochamber to maximize the effectiveness of the medication.

ANATOMY of the RESPIRATORY SYSTEM

SKELETON

            RIBS:  12 in total (2 are floating)

                        Protects the lings and heart

STERUM:  Breast Bone at front of the chest

Costo-sterum and costo-vertebral joints: where the ribs meet the sternum at the    front and the vertebrae in the back

            SCAPULAR:  complex (shoulder blade): attaches to the back of the rib cage

IMPACT OF PROBLEMS WITH THE SKELETON

The joints of the rib cage (costo-sternal and costo-vertebral) can become irritated with repetitive coughing.  You may experience pain in the front of your chest or at the back where the joints are..  If you experience a sudden onset of severe pain, this pain may indicate rib fracture. You should ask your doctor so she/he can provide with proper pain management. You may be at risk of rib fracture if you are know to have osteoporosis or if you have prolonged courses of steroids (Prednizone).

To avoid rib fracture or irritated joints, you should practise controlled coughing techniques.

If your ribs are stiff due to your lung disease and (air trapping), you will need to do some thoracic mobility exercises to maintain movement you have or try to improve it.

Pursed exhalation creates positive pressure in the lung to prevent air trapping.

MUSCLES OF RESPIRATION:

1.    DIAPHRAGM: Main muscle of breathing. Repsonsible for 60 to 80 percent of the work during inspiration.  Domed shaped. Creates negative pressure in lung to bring air in.

2.    INTERCOSTALS:  Small muscles located in between each ribs. Responsible for 40 percent of the air intake during inhalation

3   ACCESSORY MUSCLES:  muscles of the neck, not designed to work all the

time. Used by people with ling disease when in distress or because they have

developed poor breathing pattern.

HOW WE BREATHE:

The normal ratio of breathing is 1:2, inspiration/expiration. For example, if uou breathe in for 2 seconds you should breathe out in 4 seconds.

When we breathe in,  inspiration  or inhalation

-The diaphragm contracts and shortens which flattens it. It allows more space for the lungs to expand.

-The intercostals contract which makes the ribs move out and up in a “Bucket handle” swinging movement.

When we breathe out, expiration or exhalation

-The diaphragm passively returns to its dome shape.

-The intercostals relax and allow the ribs to return to their starting position.

-The abdominal muscles help to push the air out during forced expiration. This happens when doing your flow tests or when coughing.  If you use your abdominal muscles all the time, as some people with lung disease do, the muscles get tired which leaves you fatigued.

-People with emphysema have a slow and prolonged forced expiration.

Impact of problems with muscles of breathing

-Harder to breathe when carrying heavy parcels because the muscles in your arms and chest are being used to lift instead of helping you breathe properly. What are the possible solutions to this problem?   Cary lighter loads, use a cart, get your groceries delivered, let you legs do more of the work when lifting from the floor.  These tips should make it easier on your breathing and on your heart.

-Obstacles that can make breathing more difficult:  obesity, pregnancy, a large meal, bloating, and poor posture.

All of theses can push up on your diaphragm and don’t allow it to flatten out on inspiration, The lungs don’t have as much room to expand thus making you short of breath.

How position can affect your diaphragm

Lying flat on your spine (supine):

-The resting level of the diaphragm rises up towards the lungs.

-Gravity pulls down on the ribs, making it harder to move them up.

- The organs are pushed up towards the diaphragm and it makes it more difficult to breathe.

Solution: Lie with pillows positioned under the upper back and head

Sitting :

-Gravity helps the diaphragm flatten out by pulling down on it.

-Better position for breathing as long as your back is supported and shoulders relaxed.

ORGANS:

Heart:  Located between the lungs in the centre of the chest and to the left. Pumps  the blood  throughout  the  body.

Lungs :  There are two lungs, the right has three lobes and the left has two lobes. The air comes into the lungs through the nose or mouth, travels down the trachea which divides into the left and right bronchus into the respective lungs.  Each bronchus then divides into smaller bronchi which become bronchioles and finally the alveoli (air sacs).  This is where the air exchange happens.    The capillaries’ (Tiny blood vessels) surround the alveoli, the fresh oxygen comes in and the carbon dioxide is exhaled out.

Inside the bronchus and bronchioles are the cilia.  Their job is to.help any secretions move up and out of the  respiratory system.   They are in constant movement.  This movement is affected by any toxic substance inhaled into the lings including cigarette smoke. If the cilia are do not work properly, the secretions tend to pool in the lungs and may cause an infection or an inflammation.  Once they are damaged, it is permanent  The cilea do not regrow..

ENDURANCE TRAINING

ENDURANCE or AEROBIC training means:

Exercising at a low intensity for a long duration while using large muscle groups. The exercise should be comfortable and enjoyable. Examples include walking and biking.

The goal in doing endurance exercise is to train your muscles to be more efficient, or better, at using oxygen. The end result will make physical activities feel easier and allow you to do more.

Normal Responses during exercise:  Increased heart rate, Increased breathing rate and mild increase of shortness of breath.

For endurance training, you should be in an appropriate “Training Zone”   This can be monitored by the following :

Heart rate (your age-related traing zone)

Shortness of breath (2 – 4 out of 10 on the SOB scale, or 2 above resting level)

The talk test (you can still talk during exercise)

HOW OFTEN ??  The goal will be to achieve 20 to 30 minutes, 5 days a week

HOW LONG??   Forever !!!!!  “If you don’t keep it, you lose it”

We also aim to deisgnyour exercise program so that it is specific to functional needs and goals.  For example, if your goal is to be able to walk up a hill to get to church, we will train you to walk using an incline on the treadmill. Training only on a bicyle in this case would not necessarily allow you to fully reach yout goal.

PRECAUTIONS with endurance training:

Chest, arm or jaw pain or pressure

Unexplained swelling in your legs

Increased SOB or bad lung infection

Increased blood pressure

If you have a dramatic change in your medical condition as above, or are hospitalized, consult your physiotherapist or doctor before resuming exercise.

Last October of 2006, I had a bone density scan of my lower spine, left hip and left wrist because I have been on a Flovent (a corticosteroid) for the last ten years for my COPD and bronchiectasis.

Last December, my GP told me that the bone density scan showed my bones were thin and I was at moderate risk for bone breakage!

My GP then prescibed Didrocal medicine! I take one tablet with a glass of water every evening before going to bed!

My respirologist warned me 8 yrs ago that one side effect of 250 mcg of Flovent was osteoporosis! I will start this calcium therapy treatment next Monday, Dec 26, 2006.
All I can say now it was a good thing that I had a bone density scan.

PEG TUBE INSERTION

(Percutaneous Endoscopic Gastrostomy)

Dated: June 29, 2006

by Peter C Ellis

pcellis2001@rogers.com

MY DECISION

Two months ago, I decided it was best for my health to have a PEG (percutaneous endoscopic gastrostomy) feeding tube installed into my stomach. I told my wife at that time that if I continue to eat orally and aspirate food into my lungs I was just asking for trouble. My decision was based on the risks and complications that could or would develop (as explained to me from my respirologist, physiatrist, speech language pathologist and my GP) if I was to get aspiration pneumonia. The solution became very evident. I just have to stop eating orally permanently, stop the aspiration of food into my lungs and get a PEG tube. This means that I would not eat orally again for thr rest of my life time.

The above medical professionals who have looked after me for last ten years, all collectively, insisted that I had to have a PEG tube now. I resisted their advice for a year but finally two months ago, I agreed and accepted their position. The PEG insertion was done on June 8, 2006 by a gastroenterologist. Three days later it became infected and my surgeon prescribed antibiotics for ten days. The infection has now gone and the hole into my stomach (stoma) has started to heal.

My reasoning for getting a PEG tube was based on the following logic: Owing to the fact that I have chronic obstructive pulmonary disease (COPD) and that my forced expiratory capacity, a year ago, in the first second (FEV1) was 34% of normal. This is complicated by my bronchiectasis. I was told that I would not have much reserve lung capacity to fight pneumonia. In the last ten years, my FEV1 reading has decreased by 2% per year. Today, I expect it to around 32% of normal. I believe when FEV1 is below 25%, one will then require oxygen. On July 19^th., I have an appointment to see my respirologist at the Rehabilitation Centre on Smythe Road.

I have had bronchiectasis for seven years, a disease that is caused by aspiration of foreign particles into one's lungs. Three years ago I had respiratory physiotherapy which taught me lung hygiene and coughing strategies in how to clear my lungs of mucus which I carry out every day.

LIFE STYLE CHANGE

Two and one half weeks later, I have really found out that living with a PEG tube is a huge life style change. It has really curtailed my daily activities as I have to spend four hours a day connected up to my 500 ml feeding bag on the I.V. pole using 400 ml/hr Kangaroo pump. I have four feedings a day, each one lasting one hour where I consume 375 ml of formula or 450 calories. I estimate that I spend another hour in doing preparation work as follows: putting new dressings around the stoma; flushing my PEG tube with water, using a 35 cc syringe, before and after each feeding; filling the feeding bag with formula and priming the feed tube lines with formula; etc.

FORMULA

After three home visits and discussion, my dietitian decided that I will require 2,100 calories a day, based on my present weight of 186 lbs. and height of 6 ft and 1-1/2 ins to sustain myself. Because I was taking a teaspoon of Metamucil with water every night when I was eating orally, my dietitian concluded that I would need fibre in the formula.

My dietitian then recommended Novartis Isosource HN with fibre having 1.2 calories per ml. I have to take six (350 ml) cans (300 cals) of formula each day to make up 1,800 calories. The remaining balance of 300 calories is to be made up from either having two Novaritis thickened juice containers (237 ml) and 160 cals each (nectar consistency), or a pudding and thickened pint of beer. This means that I have to have four feedings a day, each lasting an hour. I find this very time consuming!!

I am not allowed to drink orally any liquid unless it is thickened up to nectar consistency with Novartis thickening powder.

HOME CARE NURSING

For the first two weeks, a home care nurse came to my home daily. Now, she comes only twice a week on mondays and thursdays. They look after all my medical home care needs such as tube feeding supplies, stoma cleaning medical supplies and my well being.

Yesterday, I asked my nurse to order me some 500 ml gravity feed bags because my bulbar polio friend in Toronto who has had a PEG tube for a year now, says that it only takes her ¾ hr. to feed herself 500 ml by gravity feed with only three feedings a day as compared to my four.

My dietitian then agreed that I should try using gravity feed bags. Based on three 500 ml feedings a day, I could expect to save at least one hour in the beginning if I tolerated it. Gradually I would try to lower the feeding time to three quarters of an hour. My time connected up to the I.V pole would then be 2 and ¼ hours as compared to 4 hours, a savings of 1-3/4 hours.

TUBE FEEDING SUPPLIES

Comprise of one I.V. Pole, one Kangaroo Enterable feeding pump rated at 400 ml max per hour, one Kangaroo Pump set easy cap closure 500 ml feeding bag with delivery tubing and twenty five Sterile Softpack 35 cc Catheter Tip Syringes for flushing.

STOMA MEDICAL CLEANING SUPPLIES

Comprise the following: Cotton tip applicators, 2x2 in Topper Drain swabs, surgical tape, gloves, Flex-Trak Anchors, bottle of saline irrigation solution, hydrogen peroxide, etc.

Ontario's Heath and Long-Term Care Program--Assistive Devices Plan (ADP)

The Ontario ADP will cover the cost of an enteral feeding pump only for people who are on continuous feeding for six or more hours a day. I guess I am out of luck!

Ontario's Heath and Long-Term Care Program—NUTRITION PRODUCTS

The Ontario Drug Benefit Plan (ODB) will cover the costs of my expenses for my Isosource HN with fibre 1.2 once I get a prescription for it from my doctor. My dietition has filled out and Ontario Drug Benefit Application form and faxed it to my GP last Monday. Tomorrow I have an appointment with my GP to discuss this further.

THE NEXT DAY

Well, when I saw my GP, she immediately filled out and signed The Ontario Drug Plan Nutrition Products form which I then gave to my pharmacist with a prescription for 240 days for my Isosource HN with fibre 1.2. Instead of paying $ 60.00 for one case of 24 cans I will only pay $ 6.11 for ten cases of 24 cans which is actually worth $ 600.00 without a prescription. My pharmacy will deliver 10 cases to me on Friday afternoon.

TODAY’S TUBE FEEDINGS

I am now on three tube feedings a day taking in 500 mls per feeding in 1hr 20 minutes for each feeding. I like this much better. I will also try using gravity feed bags next week where I hope to reduce each feeding down to one hour. I have now regained 4 pounds and weigh 182 lbs. My nurse is coming only once a week.

AN UNFORTUNATE INCIDENT

Two days ago when I getting out of my car, the external cap or plug which closes the PEG tube to the outside came off and all hell broke loose. All the contents in my stomach came rushing out the tube and soiled my underwear, shorts, socks and shoes. Now I use a paper clip with gauze to clamp the tube. This is part of the learning process. The same thing happened to my bulbar polio friend in Toronto while she was sleeping in bed. My nurse has ordered some gaget that will prevent this from happening again.

JULY the 9th. UPDATE:

I am down to three feedings a day, each taking between 3/4 to 1 hour, using gravity feed bags instead of the Kangaroo feed pump bags.

Spirometry Results

1. Values were lower today as compared to those on Jan 14, 2004


2. Actual FEV1 (L) today was 1.25 L as compared to 1.47L It decreased from 38% of normal to 33% of normal


3. Actual FVC (L) today was 3.42 L as compared to 4.09 L. It decreased from 85 % of normal to 72%


4. FEV1/FVC (%) today was 37% as compared to 36% .


5. FEF 25-75% (L/Sec) today was 0.44 as compared to 0.40. It increased from 11 % of normal to 12%.


6. FEP Max (L/sec) today was 51% of normal as compared to 61% .


7. Expiratory Time (sec) today was 10.16 sec as compared to 13.73 sec.

My conclusions

1. There are three different processes going on that are contributing

to my poor lung condition

• Aspiration owing to my moderate to severe swallowing difficulties which has caused my bronchiectasis.


• Bronchiectasis lung condition makes you more susceptible in getting lung infections.


• My COPD caused by my prior 12 yrs of heavy smoking has limited my reserve lung capacity to fight pneumonias as compared to a normal person and will further decrease an amount every year to a point where I will require oxygen.


• My ability to fight and recover from pneumonias will further decrease accordingly as my FEV1 decreases or as my reserve lung function decreases.


• The conclusion to be drawn from all this is if I get pneumonia the resulting consequence could be quite severe as compared to a normal person.


• The unfortunate reality for a person with COPD lung disease is that every year the spirometry results decrease . Your well being gets worse. You get shorter of breath and ones ability to fight pneumonias gets worse. The need to be on oxygen gets higher.


• The FEV1 reading will decrease by 5 % of normal every year. Below 25% things get worse and one’s ability to fight pnuemonia gets worse.

TUBE FEEDING
There are three medical professionals recommending a JPEG tube at this time: my Speech Language Pathologist , my physiatist and my respirologist. They are two against it , my gastroenterolgist and myself.
ANTIBIOTIC PRESCRIPTION
My respirologist filled out a prescription and I am to fill it out when I feel the need arises Ie: more shortness of breath, fever, the colour of my sputum changes from yellow to green and difficulty in coughing and breathing.
LUNG HYGEINE
Is the most important thing that I can do for my lungs
PROGNOSIS
My respirologist stressed that my gasterenterologist does not know my complete story as to whether or not I should have a feeding tube.
My COPD will get worse every year and eventually I will have to be on oxygen. The downward slope of my COPD deterioration has been normal as compared to other people who have COPD.

on Nov. 7, 2005 regarding
Tube Feeding by the Stomach
SURGERICAL PROCEDURE

• Valium will be used for relaxation so that the surgeon will be able to pass the scope down the esophagus and into the stomach.


• Local freezing will be used on the left side of the abdomen to enable the surgeon to cut a 1 cm. in diameter hole through the abdominal wall. Pain killers and antibiotics will be administered after the surgery is complete. The cut through the abdominal wall is suppose to be quite painful after the local freezing losses its effect. The whole procedure takes 20 minutes as follows:


• Firstly the surgeon inserts a scope and passes it down orally, through the esophagus and then into the stomach.


• Secondly, the surgeon will make the cut through the abdominal wall.


• Thirdly the surgeon inserts a wire through the hole in the abdominal wall she then with the scope she grabs onto the wire and then pulls the wire back out via the esophagus and mouth.


• Fourthly, the feeding tube is attached to the wire and then she pulls on the wire outside the stomach thereby pulling the feeding tube down the esophagus and through the stomach to the outside of the body.


• The surgical hole through the abdominal wall is located on the left side and above the belly button. My back brace will not interfere with the feeding tube at all and the surgery will be preformed with my back brace on.


• There should me no difficulty to get the scope down my esophagus because my upper sphincter was surgically relaxed.

RISKS AFTER SURGERY

1. The biggest risk is infection for ten days after the surgery. You have to wash the area around the incision three times a day.

HOME CARE

1. You will be monitored by a nurse and dietitian.

FOOD ONE CAN EAT ORALLY AFTER SUGERY

1. Same food that I am eating now.

REPLACEMENT TUBES

1. The original tube has to be replaced once a year and in so doing this the surgeon does not have to place a scope down the esophagus.

BOLOUS FEEDING

1. Will be the type of feeding used

DOCTOR’S RECOMMENDATIONS

1. She did not think that I should be fed by a feeding tube at this point in time because

I am not loosing weight
I am not aspirating
My present health is good
I have never had pueumonia (had walking pneumonia five years ago and
was put on antibiotics)
RESPIROLOGY

1. My respirologist will access if my bonchiectasis and COPD has remained stable or have become worse over the last two years.


2. With his help I should be able to make a more intelligent and more informed decision wether tube feeding is appropriate at this time.


3. I need a new Acapella device as the mouth piece on my existing one is all cracked.


4. What do you think of the flutter device?

THINGS I WILL BE ABLE TO DO AFTER THE INCISION HAS HEALED

1. Take baths and swim in a pool.


2. Will be able to eat orally as I am doing now.


3. Will be able to lie with stomach facing down on my chiropractor’s table for my treatments .

MY GENERAL QUESTIONS ABOUT PEG TUBE FEEDING Answers are in red

1. How long does a tube last before it has to be replaced with a new one? 2 to 3 yrs


2. Can I wear my back brace with a PEG tube? Has to be investigated with gastroenterologist. This may present a problem because if the PEG tube can not be installed in the stomach, it would have to be placed in the bowel which require a continuous hookup to a food supply. Hopefully this won’t be a problem where they would install a normal PEG where bolus feeding can take place.


3. Can I alternate eating orally and then resort to tube feeding for the next meal if I had a tube and so on? Yes


4. Does the tube sit flush with the outer skin or does it protrude beyond the skin. The stomma fits flush with the skin but the tube extends out by approximately 6 ins.


5. What is the difference between bolus feeding and continuous feeding? Bolus feeding is intermittent feeding and hookup while continous feeding is ongoing.


6. How often does the opening in the skin get infected? Sometimes gets infected.


7. How does one get enough fibre in one’s tube feeding diet to avoid getting diarrhoeia?


8. How would I take my medications when fed through a tube? They are crushed.


9. How would I keep my normal weight at my normal standard when fed with a tube?


10. How does one feed himself bolously? and continuously? Both are like gravity feeding from an elevated bag using a control valve to govern the amounts of food that is being fed through the tube. This feeding bag and tube has to be washed with soap and water after every feeding. Every 3 days it has to be washed with vinegar.


11. Can you purchase tube feeding food in the grocery store as normal food is bought? No it has to be purchased from the pharmacy or from the hospital.


12. Can one blenderize store bought food for tube feeding? NO


13. Can one tube feed himself with Unsure? Not sure

PEG TUBE MAINTENANCE

1. What does one have to do to maintain a feeding tube so that it does not clog up and get full of harmful bacteria and infected? It has to be flushed with water after every feeding to keep the PEG clear.

MY PRESENT ATTITUDES AND THOUGHTS ABOUT PEG TUBE FEEDING

1. I believe patients get tubes because they can not get adequate nourishment orally for various reasons: strokes, ALS, throat cancers, etc. I am not in this category as I am maintaining my normal weight. I am getting lots of nourishment.


2. My 4 modified barium e-ray studies reveal no aspiration. I realize these tests are just snap shots in how one swallows in five minutes of living. It does not give one an indication how ones swallows over 12 or more hours of time in a day.


3. I am fairly mobile and active. I am not confined to a bed like some or most of your patients.


4. I do not want to be tube fed at this point in time. Please refer to my reasons that I wrote up a month ago and which I gave to Virginia Kerry.

My REASONS FOR BEING HERE

1. To learn as much as I can now about tube feeding


2. To see what feeding tubes look like and to learn about all the accessory devices used in tube feeding.

SUMMARY and MY CONCLUSIONS
I should consider having a PEG only if I get pneumonia very often (say once).
I should consider tube feeding only if I am unable to maintain my weight and maintain my self with proper nourishment.
THINGS I MAY WANT TO CONSIDER NOW or in the near future

1. The hospital sells TRI-Puree from Campbells at $ 2.50 each frozen.


2. Arrangements for this has to be made through the dietition

TYPES OF TUBES

1. PEG feeding can either be done by bolous feeding or by continuous feeding.


2. If the feeding tube can not be placed in the stomach because of my back support brace, it may be placed in the duodenium (PEJ). A J-tube (PEJ) requires continuous feeding which I believe can be done during sleeping hours. I don’t think that I would like that???


3. Toasting any type of bread makes it easier to swallow. Untoasted bread usually forms a large thick bolus which is more difficult to swallow. Bagles are too thick or dense for me to handle

In the meantime it is very important that I keep up my lung hygiene treatments to keep my lungs clear as possible to avoid pneumonias.

Date: June 15, 2005 Medical Diagnosis: Post Polio
Reason for referral: Coughing, Possible Aspiration, Bronchiectasis
View Assessed: Lateral & AP, Radiologist, and Speech Language Pathologist

Oral Preparatory Phase:
Consistencies presented:

• Thin liquid from teaspoon and from cup in lateral and AP views.

Observations:

• Spillage from the Lips: None


• Impaired Bolus Formation; None


• Difficulty with chewing: None


• Spillage into pharynx: yes

Oral Phase:

• Hesitation: None


• Tonque thrust: None


• Repetitive tongue pumping: None


• Slow oral thrust: Doesn’t try to swallow cookie without liquid


• Tongue Weakness: Yes, base is very weak


• Incomplete/lack of Velopharyngeal closure: None


• Piecemeal deglutition: Yes


• Oral Residue: Not significant

Pharyngeal Phase

• Delayed Swallow: Yes at times


• Absent swallow: None


• Incomplete/lack of epiglotic inversion: Yes, Very minimal inversion


• Reduced laryngeal elevation: None


• Aspiration: None


• Impaired UES opening: Yes, same as last MBS post myotomy.


• Vallecular residue: None, as so little inversion of epiglottis


• Priform sinus residue: Yes, major, everything, even liquid


• Pharyngeal wall residue: Yes, minor


• Reduced pharyngeal peristalsis: Yes


• Asysmmetric Bolus flow: Yes; down Right side. This may be new.


• Multiple swallows per bolus: Yes 4 to 5.


• Dynophagia: None

Anatomical Structures

• Cervical osteophytes: None


• Curled Epiglottis: None


• Cricopharygneal bar: Cricopharyngeus is prominent


• Zenkers Diverticulum: Yes; as on last study in 2003


• Tracheo-esophageal fistula: None

Esophageal Phase
Radiologist reported primary esophageal peritalis in 2003

Clinical Impression:
Area of Dysphagia: oral phase, pharyngeal phase, moderate to severe.

Comments:

• Oral motor exam reveals slight weakness of left nasolibia fold, not new according to patient and slightly reduced right side velar retraction as compared to the left side but excellent range.


• Vocal quality is slightly wet.


• He reports biting tongue, cheek and lips both on right and left sides.


• Speech is mildly hypernasal.


• Left lip weakness on retraction.


• Dry mouth from medications and tonque. Very dry. He says he does not drink enough water but he does use constantly as a liquid wash down when eating.


• Frequent spontaneous coughing reportedly due to bronchiectasis.


• Healthy teeth.

Swallowing Recommendations:

• Small amounts per swallow(1/2 tsp)


• Sitting upright at 90 degrees during meals


• Remain upright for 20 to 30 minutes following meals.


• Alternate solid and liquid swallows.


• Add extra moisteners to solid textures (eg. Gravy, sauces, sour cream, mayonese, etc)


• Ensure no food is left in mouth at the end of a meal


• Maintain good oral hygiene.


• Allow 4 to 5 multiple swallows.

Other

• When compared with the last MBS of Feb 26, 2003, there is no significant change other than possibly the right preferential flow of liquid on AP view.


• Pharyngeal stasist evidence of tight cricopharygneus and weak tongue base appear unchanged, however the patient says swallow is more work, more nasal regurgitation, more likely breathing is more difficult with bronchiectasis.


• Patient believes bronchiectasis is caused by aspiration of food though he says Dr McKim did not agree.


• Given that the patient is now more amenable to the idea of PEG, and he has reported slight weight loss over 11 years, PEG may be appropriate.

Bulbar Polio Survivor now having Post Polio Syndrome,
Moderate to Severe Dysphagia, Chronic Obstructive Pulmonary Disease (COPD),
Bronchiectasis and Hypertension, dated June 2004

CAUSE of my lung condition: There is a remote history of polio and chronic dysphagia.

DIAGNOSIS: There is minimal focal bronchiectasis and scarring in the posterior bases of the left lower lobe. The same is seen in the right middle lobe.
There is no evidence of pneumonia. There are no lung nodules, or enlarged
lymph nodes-

IMPRESSION: Right middle and left lower lobe bronchiectasis.
PRESENT LUNG BEHAVIOUR according to My Respirologist

1 TOTAL LUNG CAPACITY 70% of normal (Spirometry).

2 AIR EXPELLED IN FIRST SECOND (FV1) is 35 to 40% of normal
(Spirometry).

3 COUGHING POWER: Between 220 and 250 L/min (Using Cough Meter).

4 MAXIMUM ALLOWABLE NEGATIVE PRESSURE (VACUUM) IN PHARNYX:
-28 cms H2O (50% of Normal) Am not able to inhale much air.

LUNG HYGEINE As recommended by a respiratory physical therapist

The following procedure is to be carried out twice a day

1 Inhale through a personal steam vaporizer for ten minutes

2 Exhale twenty times into an Acapella Vibratory Positive Expiratory Pressure
(PEP) device. Set at mid resistance

3 Inhale twenty times through a Treshhold Inspiratory Muscle Trainer Device
Set at 7 cms H2O and increase very gradually. This device is to insure that I will
be able to inhale air down to the bottom of my lungs in order that I can get air
below the mucus to cough it up.

4 Deep breath using diaphragm muscle and keep neck muscles relaxed.

5 Do trunk exercises and move.

6. Coughing: Use two swift abrupt and strong coughs in stead of one long
prolonged cough

NOTES

Acapella Vibratory Positive Expiratory Pressure System
acapella® combines the benefits of both PEP therapy and airway vibrations to mobilize pulmonary secretions and can be used in virtually any spatial orientation. Patients are free to sit, stand or recline. It improves clearance of secretions, is easier to tolerate than CPT, takes less than half the time of conventional CPT sessions* and facilitates opening or airways in patients with lung diseases with secretory problems (COPD, asthma, Cystic Fibrosis). Color-coded units (green for high-flow, blue for low) help customize treatment based on clinical needs. You can adjust acapella's frequency and flow resistance simply by turning an adjustment dial.

Threshold Inspiratory Muscle Trainer

Boost your performance! Increase your endurance! ...And do it without leaving the comfort of your easy chair! Just inhale through the Threshold® Inspiratory Muscle Trainer... Studies show that training at 30% of maximal inspiratory pressure for two months will increase max. inspiratory pressure, improve endurance time, and increase the distance walked in 12 minute trials.

The Threshold® Inspiratory Muscle Trainer (IMT) provides a constant and specific training workload, regardless of how fast or slowly you breathe. The adjustable (and calibrated) spring-loaded valve blocks air flow until you can produce enough inspiratory pressure to overcome the spring force. Inspiration muscles work harder and get stronger over time.

The IMT is easy to use. With the mouthpiece removed, twist the control knob so the indicator points to a low pressure number (around 10 is a good starting point for most people). Use the nose clip (included) to insure that you are breathing entirely through your mouth. Start training at 10 to 15 minutes a day. If your current setting is too easy, increase the setting to the next calibration mark. (The calibrated IMT is marked every 2 cm H2O from 7 to 41.) After a while (6 to 8 weeks) you will notice a training effect -- What you can now do is much more than what you could do initially!
The IMT is also very easy to care for... just rinse in warm soapy water. Flush with clear water. Shake out excess water, and air dry.

Since 1997 I have experienced moderate to severe swallowing difficulties, a constricted upper esophageal sphincter (UES), and a small anterior diverticulum (pouch) just above the UES.
After undergoing a second modified barium swallow video x-ray study in December 2001, I was asked to consider having the UES surgically relaxed (the medical term is cricopharyngeal myotomy) by an ear, nose, and throat (ENT) specialist and to explore the possibility of a feeding tube in the long run. I did not like the feeding tube solution, so I chose the UES option.
Before the operation, food and secretions pooled in my throat at the entrance to the UES. Food also collected in the pouch. I had great difficulty in passing food from my throat into my esophagus and needed up to 10 multiple swallows to get food down with sips of water.
Sometimes food that entered the upper sphincter came back up into my throat. I also had great difficulty in speaking with a clear voice through my secretions, was always coughing up mucus and secretions, and had walking pneumonia.
In January 2003, the ENT physician surgically cut the UES muscle to relax it but did not relax the muscle completely for fear of giving me reflux problems. The pouch was not repaired because it was too small.
A post-operative modified barium swallow video x-ray study revealed the following:

• pooling of food and secretions no longer occurs,


• swallowing is less effortful and takes less time,


• no evidence of aspiration,


• five multiple swallows needed instead of 10,


• speech is clearer,


• food still collects in the pouch, but the ENT doctor said the pouch will gradually disappear.

Last October, I still coughed up lots of mucus during the day, probably due to bronchiectasis (chronic dilatation of the bronchi due to infection) in the posterior bases of the right middle and left lower lobes of the lungs. My vital capacity was lower than five years ago. A scan in November showed minimal bronchiectasis. Spiriva (a long-acting inhaled bronchodilator not yet available in the U.S.) was prescribed. I also take Flovent (fluticasone inhaler) for COPD and Ventolin (albuterol bronchodilator) as needed. My vital capacity has improved and is 65-70% of normal, but my FEV1 is 35% to 40% of normal. Respiratory physiotherapy was also prescribed to teach me lung hygiene
I am very happy and satisfied with the results of the surgery. It took me some time to find a willing and experienced doctor to perform the operation on a bulbar polio survivor. My ENT doctor was young, full of confidence, and had lots of experience with this operation on cancer patients; I was the first bulbar polio patient that he operated on. I would recommend this procedure to anyone who has a constricted upper esophageal sphincter and a very weak throat.

After an attack of acute bulbar polio in 1951 at age 15, the entire left side of my body and my right arm were affected. I could not swallow or talk, but was not placed in an iron lung. Following a 16-day hospitalization in Montreal, I received physiotherapy for six months, and then returned to the ninth grade in high school. I made a good recovery, but have some residual effects in my left leg, both arms, and my speech and swallowing.

History of Swallowing Problems:

Age 43-1979:- My swallowing started to deteriorate. Food stuck In my throat, and I began to use liquids to assist the swallowing of solid foods. Barium swallow x-rays and esophagoscopy revealed a small hiatus hernia, subsequently treated with antacid medication (Pepcid, 20 mg b.i.d.). I am able to eat most foods without difficulty, and my swallowing remained stable for next 17 years.

Age 60-Late 1996:- My swallowing deteriorated over a month's duration to the extent that I could not eat solids, especially later in the day. I dreaded coming to supper, and the effort required to swallow solids became too great for me to continue trying. I lived on a liquid diet for three weeks, lost 25 pounds, became weak, and felt awful. At the end of the third week, I decided that it was imperative to get more nourishment and to risk choking. I started eating pureed foods (baby foods, Boost nutritional drinks, etc.) and other very moist soft foods (boiled eggs, cream of wheat, moist toast). I had to learn how to swallow all over again. My general praditioner referred me to a cardiothoracic surgeon for an esophageal motility study because of the symptoms of the hiatus hernia and because saliva was collecting in my throat that I could not swallow.

Age 60-April 1997:- The cardiothoracic surgeon performed a barium swallow x-ray, esophagoscopy, and esophageal manometry. The later two tests were performed on the operating table because the upper sphincter in my esophagus was constricted, and they could not pass tubes through my throat when I was awake. Test results revealed a very weak pharynx (only 10 % of normal strength), no hiatus hernia, a very small (I cm.) Zenker's diverticulum, weakness in the midesophagus, and confirmed that the upper sphincter at the entrance to the esophagus was constricted. My surgeon told me that he could cut the upper sphincter to provide more open area, but the contraction strength would decrease by 50%. He would not guarantee that the surgery would help me because of the inherent structural weakness in the pharynx and in the mid esophagus. I decided not to have surgery. The surgeon was an expert in his field, but I was the first patient he had seen with the late effects of polio. After studying many medical articles on dysphagia, I asked my physician to refer me to a physiatrist and to a speech language pathologist.

Age 61-July 1997:- The physiatrist immediately referred me to a speech/language pathologist for my swallowing and to the physiotherapy department of the Ottawa Rehabilitation Centre for a chronic lower back problem, my weak left leg and arthritic knee. In the Communications Disorder Department at the Centre, I had a bedside assessment of my swallowing by the speech-language pathologist. The following recommendations were made:

• Drink eight glasses of water per day to loosen up my saliva.


• Do not drink carbonated beverages, they are difficult to swallow.


• Do not take muscle relaxants or alcohol; they tend to relax and inhibit coordination and muscle control.


• Do not swallow foods of different consistencies together.


• Continue diet of moist soft foods.

• Turn my head to the left when swallowing.


• Eat several small meals per day instead of three large ones in order to avoid symptoms of pressure buildup In the esophagus.


• Continue taking Pepcid.


• Continue multiple swallows.


• Alternate small sips of liquids to assist the swallowing of solids. Do not take large gulps of liquid.


• Do not eat when fatigued.

Age 61-Sept 1997:- The Rehabflitation Centre referred me to Ottawa Cvmral Hospital for videofluoroscopy to further docurrient my swallowing dysfunction. Results of this study revealed moderate oropharyngeal dysphagia, consistent with dysphagia associated with the late effects of Polio.

Age 61-Oct 1997:- My wife and I viewed the videofluoroscopy film with two speech-language pathologists. This film showed what was going on when I swallowed, and was very beneficial.
Further recommendations to help me swallow were.-

• Alternate liquids and pureed/ minced consistencies to facilitate swallowing/pharyngeal clearing.


• Eat slowly and eat small quantities at a time.


• Swallow several times after each mouthful to facilitate pharyngeal clearing.


• Avoid foods that do not form a cohesive bolus, (ie., rice, lettuce).


• Eat minced, moist food.


• Use the Mendelsohn maneuver when swallowing to improve bolus flow through the pharynx. (Swallow and attempt to feel the elevation of the larynx and the feeling of the throat closingtholding one's breath. Swallow again, prolonging the elevation of the larynx during the swallow.)

Age 61 -March 1998:- I was discharged from the outpatient department at the Rehabilitation Centre after six months of physiotherapy. I also saw a pulmunologist there to determine if the function of my lungs had deteriorated as well, but it had not. Today I am able to eat most foods (liquids and solids) using the new strategies learned from the speech/language pathologists. I have to be careful, and am unable to socialize (talk) when eating. I avoid alcohol. I have regained all the weight I lost, I am grateful for the medical care and advice given to me over the past year and a half, and especially to fellow polio survivor, Bonnie Hatfield.