May 2001 to May 2002

5 May 2001

After each oral intake of food, we put Patricia on the nebuliser for about five minutes followed by some crushed ice. The ice was dark grape juice thickened to a honey consistency and then poured into ice cube containers and frozen. They don’t seem to freeze quite as solid as water does, and are easily mashed to a gelati or sorbet type consistency within about five minutes of being taken out of the freezer. The crushed ice was spoon fed to her. I think the theory was that any mucus in the mouth would stick to the crushed ice and go down with it.

On 26 April Patricia had her most serious choking episode to date which lasted for about 8 minutes and required assistance from the ambulance service. They used suction to remove the mucus from her throat and gave her oxygen. This left her severely distressed and indicated quite clearly that her condition had worsened. The use of suction is a ‘catch 22’ situation as it appears that the actual suctioning process stimulates the salivary glands, producing more mucus!

16 May 2001

Following a visit to Bethlehem Hospital for respite care and assessment, changes were made to Patricia’s daily regime. During that stay, she had another video fluroscopy. She experienced initiation difficulties and tremor of the lips and tongue. There was evidence of threatened aspiration while drinking thin liquids. The following recommendations were made:
INTAKE: To continue with enteral feeding with supplementary oral intake.
POSTURE: Seated upright.
FOOD CONSISTENCY: Vitimised/Pureed. Via a teaspoon.
FLUID CONSISTENCY: Nectar Fluids. Via a straw.
It was also recommended that Patricia try the following strategies at meal times:
Frequent rest periods during meals.
Moisten foods with gravy, sauce, mayonnaise, cream, etc.
Alternate food with sips of fluid.
Small frequent meals.
Avoid spicy foods/fluids.

In addition, her nebuliser use was increased to six times a day, three times with sodium chloride (saline) only and three times with sodium chloride and morphine. The application of Enzymex paste on her tongue (to assist in thinning the mucus) was increased to four times a day.

Following these changes, the incidence of choking episodes decreased although the mucus problem was still there. The need to apply assisted coughing increased significantly. Where I had been doing that once a day at most a few weeks before, I found it necessary to do it several times a day, perhaps as many as six or seven times. Assisted coughing is a technique where you place the palm of one of your hands on the person’s back, and the palm of your other hand on the person’s chest, they take a deep breath and then cough, or try to, and you push both hands against the person’s body in a vibratory manner.

Patricia’s swallowing function required ongoing Speech Pathology Management. This included home visits, when appropriate, phone monitoring and full reassessment during respite admissions.

1 June 2001

The community nurse from Bethlehem recommended that Patricia go on a bowel regime and Patricia agreed to it.

10 August 2001

In the early hours of 10 July Patricia had another very serious choking episode. I was unable to resolve it, nor were the ambulance people when they arrived. She was taken to the Box Hill Hospital emergency centre for further treatment. The medical staff there were very good and listened to what I had to say. They tried the techniques I used at home without success. Eventually they put adrenaline into the nebuliser and gave that to her and that seemed to do the trick. A considerable amount of mucus was then sucked out of her airways.

As she was due to go in to respite care at Bethlehem Hospital that day, the ambulance crew took her straight there from Box Hill Hospital.

During that stay, her condition was reassessed and changes were made. It was felt that her mouth was drying out too much and was hampering the mucus management, so they stopped the Probanthine (Propantheline). This meant that she was more likely to dribble at times, but with her mouth not being so dry, it seemed to be assisting her swallow. They also stopped giving her morphine in her nebuliser and instead prescribed morphine (1ml only) four times a day directly into her PEG tube. In addition, they discontinued the Zoloft and put her on Cipramil. The overall result was that the choking episodes became very minor and were more easily managed, she developed a cough reflex which was good, and the mucus management worked better.

By this stage, the level of care had increased significantly, but the quality had also increased, which was important. To help me cope, I recruited a live-in housekeeper-cum-live-in carer.

11 September 2001

The incidence of choking episodes was still reduced, and when they did occur, we were able to manage them. The need for assisted coughing increased again, but it was not as successful as before. The community nurses visiting Patricia at home recommended injection morphine rather than suction to treat serious choking attacks.

There were some problems with the catheter, with grit blocking the tube. We decreased the amount of vitamin C that Patricia had each day to see if that would have any effect. I’m not sure it made any difference!

Patricia was tiring more easily and the new bed time of 8:30pm was clearly a good idea.

18 January 2002

Patricia was clearly more advanced but still remained cheerful most of the time. But all of her functions had clearly deteriorated. She no longer drank through a straw, all drinks were spoon fed to her. Her oral intake was down and her enteral feed was up. I gave her crushed grape juice ice before all oral intakes to help stimulate the muscles in the tongue that aid the swallowing.

The daily morphine intake had almost doubled and we were using slow release capsules instead of the liquid morphine. Several other medications had been changed as well.

Her bowel regime went haywire when the morphine was increased. I don’t intend to go into that here, but am happy to talk about it (via direct email) to anyone who feels it might help them.

Her speech worsened and she became quite dependent on both the lightwriter and alphabet board.

Her manual dexterity deteriorated markedly and she experienced trouble weight bearing. Shortness of breath had become quite common and anxiety had become a major issue.

18 February 2002

Patricia had another visit to Bethlehem Hospital. This was on the recommendation of the Community Nurses to assess possible changes to medication to combat anxiety, and to look at the bowel problem. Pressure sores (bed sores) had reared their ugly head. She’d spent the previous two weeks in bed.

Her voice is now quite weak.

She had been taken off the slow release morphine and put back onto liquid morphine. She also had Ativan (lorazepam) added to assist with the anxiety.

27 May 2002

Patricia’s swallowing had deteriorated to the point where all her essential food intake was given to her via the PEG. She was still having a little orally for pleasure and taste only.

I think the advice given by Patricia’s Neurologist 2 years previously, to consider having a PEG tube inserted while she was well enough to have the operation, was good advice. She would not have been able to have had the operation at this stage of her illness. I would even go so far as to suggest that if it wasn’t for the PEG tube, I don’t think Patricia would have been alive at this stage.

The decision to have a PEG tube inserted is one that needs very careful consideration. I talk about this more later.

I continued giving the crushed ice while she still had some swallow.

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