Margaret is Home

On Sunday morning I drove down to Brisbane Airport to pick up Helen at 9.00 am. The drive takes about ninety minutes on a good day and it was a good day.   We got back to the hospital just after 10.30 pm.  The hospital is on the way home from Brisbane.

Margaret was still in the ICU so we hung around most of the day to see if we could talk to the specialist but he didn't come before we left at 4.00 pm.  Margaret was pleased to see Helen and we took turns in going to lunch.  Margaret just wanted to go home and was getting upset because her specialist hadn't come.

We got home about 5.00 pm and Margaret phoned me at 6.00 pm to say that she had been transferred to a private room and was coming home tomorrow (Monday).  I phoned the ICU who confirmed that she had been moved but knew nothing about her being discharged next day as she was still on a portable heart monitor because her heart heart rate was still erratic.   I then phoned the ward who said that there might be decision at 9.00 am next day.

On Monday I phoned again and was told that the specialist would not be in to later in the day so we visited at the normal time of 10.30 am.

Throughout the day Margaret became more and more agitated and finally at 3.30 pm I phoned the specialist's rooms only to find that he was not expected to make his rounds until 6.30 pm because he was consulting at another clinic that day.  I phoned the clinic and left a message for him to phone me as soon as he had seen Margaret.  Margaret was very upset when we left to go home but Helen and I were exhausted.

The specialist rang at 6.30 pm.  Basically there was no medical reason for Margaret to stay but he would get the Social Worker to talk to us on Tuesday to see if  if we could cope at home or if we needed extra support.  He said that the tests had shown that Margaret had suffered some heart damage and the problem of blocked arteries still existed.   She would not survive stenting or bypass surgery so she was coming home on medications to minimize the possibility of future attacks.  She would need to be treated with kid gloves.  She could get up and walk around the house using her wheely walker but must use her wheel chair for outside walking even in the garden.  He said that her renal condition was still causing concern.  He had started her on a low dose of diuretics but this had to be monitored as we were in a classic "Catch 22" situation.  The diuretics increase the likelihood of the blood supply to the heart dropping and causing a heart attack but the build up of fluid due to renal failure could cause pulmonary oedema followed congestive heart failure so diuretics are a necessity! 

We visited at 10.30 am on Tuesday.  Margaret was very excited - she was going home but had forgotten the caveat "after the social worker has assessed her post discharge care plan".  The social worker came in at 12.30 pm and made some recommendations and agreed that that Margaret could come home providing the Blue Care RN visited to assess her condition.  This has been set up for today, Thursday.  We were nearly set to go except that the specialist hadn't officially discharged her.

A couple of hours later and phone calls by the ward sister to his rooms he finally came and signed her out.

We were home an hour later.

Margaret is very weak.  She gets very short of breath following the slightest exertion.  On Wednesday I took her to my GP to get new prescriptions for her new medication regime.  We used the wheelchair but she was exhausted when we came home.  Since then even getting out of bed to go to her bathroom results in he gasping for breath.  Unfortunately this can be due to either renal failure or her damaged heart.  She will have her normal renal function blood tests tomorrow and we will get the results next Monday when she visits her GP.

In general Margaret is quite calm and joins us for dinner and sits up a little while afterwards watching TV with us.  She is still difficult to settle down to sleep and can remember having her medications.  Luckily she doesn't seem to want more than a glass or two of wine, which is still permitted under the"What the heck?" condition by her specialist.

Today, Thursday, she is annoyed that the Blue Care RN is calling and "doesn't want that woman bossing me around!"

Helen is going to stay until the end of next week to help out and also meet my young sister who comes to stay next Wednesday form the UK.  They are closer in age to each other that I am to them and Helen loves to refer to her "Auntie Sue".

To close off a few loose ends the CJD concern has been discounted and the infection scare (VRE)  proved unfounded but she had shared a room with an infected person before Christmas.