Helen's Hope

Helen's Hope: May 2013

Thursday 30 May 2013

May 30 2013

Visit with Theresa, Rachael & James.  Just missed dad, Christine, Pauline & Natalie.  Helen going back to bed because she had been out all morning.

Spoke with Carol (chief executive) who said that Helen seemed much brighter and reactive.  Her blood sugars are more under control now.  Her head is a better shape.

Finger on left hand looks sore.  Right big toe has a dressing on.  Being monitored for infection by GP.  It is currently quite dry.  Will see chiropodist in the next week or so.  She might need a toenail removal at some point.  Helen is always going to be prone to nail infections, especially with the diabetes.  Her head is a better shape.  The wound where the shunt was replaced had been oozing with a fair amount of exudate.  Swab has been done to ensure no infection. The staples were removed on 24th and wound is drying up now.  

Helen went on eye gaze yesterday and burst all the balloons.  Judi was very pleased with her progress.  She is much more focused since her operation.  

The pressure sore on heel still no worse.  She still has a padded boot on.  I told the nurse in charge that I had put in a complaint to Southampton General about it and was waiting to hear back in July.

I also told her that I was hoping to look at Helen's medical records to see if the collagenous colitis was actually diagnosed definitely during the flexi sig.  If she has the disease then the doctor can treat it more aggressively.

Wednesday 22 May 2013

May 22 2013

Phoned hospital at about 1045 and Helen was transferred back to Holy Cross at 0930.  

Phone call from Holy Cross at 4ish to say that she was fine and settled back.

Tuesday 21 May 2013

May 21 2013

Spoke with ward this morning at about 1030.  Was told that Helen could be transferred today.  Her blood sugars were still on the low side (6.? and 4.8). Her feed was due to start at 11 and she would have her blood sugar done again then.

Call from C Neuro saying that she was being transferred at about 5pm. Went to Haslemere to the garden party and to wait for Helen with Dad.

Phone call from C Neuro.  Helen's blood sugar was 3.5 as they were leaving so it was not safe to transfer her without a nurse escort, which thy did not have.  So another night in hospital and back tomorrow with escort.

Have emailed PALS at Southampton asking for an investigation of sorts into why she had her trachy changed and why she has a pressure sore.

Spoke with Holy Cross about the pressure sore.  She was shocked as well.  She also mentioned about her big toe.  It has been discussed before and Helen may need an operation to remove the nail in her toe in order to prevent these recurring infections.  This is for further review.

Sunday 19 May 2013

May 19 2013

Phoned to see if trachy had arrived.  It hasn't.

Spoke with nurse looking after Helen.  Asked if it would be possible for me to supply a trachy and them change it.  She spoke with on call and they agreed that it would be ok.  In between I spoke with Holy Cross who said she would see if they had a size 7 trachy.  She confirmed that they did and that I could pick it up and take it to Southampton.

Newbury - Haslemere - Southampton - Newbury!  150 miles to deliver a trachy.

Emailed Andy Eynon, Director of Neuro Surgery asking why Helen's trachy had been changed and about the other problems, including the pressure sore.  He emailed back saying he would look into it on Monday.

Saturday 18 May 2013

May 18 2013

Helen being turned when Isaac & I arrived to 1530.

Saw her at about 1600.  Looks ok.  Had to ask for suction because she isn't coughing.  I didn't think the suctioning cleared it very well.

She has compression socks on.  Big toe on left foot is sore.  Looks like some over granulation tissue.  Heel on left foot is very red with a round red mark approximately 5 cm diameter.  Photos have been taken.  I asked the nurse about it and she said they knew about it but did not know where it had come from, saying it may have been there when she came from HDU.  It was not there in Holy Cross.

I spoke with Holy Cross.  She confirmed that Helen did not have any pressure sores when she left them. I let her know that the hospital was still waiting for the size 7 trachy and that the only one in her bag was a 6.  She said that there would have been 2 in there, a 6 & 7.  The 7 had gone missing somewhere.

I do not know what they are using to brush her teeth.  The toothpaste from Holy Cross is still unopened. I think she is being washed in Hibiscrub!!

Questions to be answered

Where did the trachy go missing?
Why was her trachy changed for a 7.5?
Where did she get the pressure sore n her heel?
Have her teeth been brushed?
Is she on oxygen and why?
Why was I told the trachy would be in the next day by 4pm and today was told that it was a 7 working day time?

Pissed off is an understatement!!!

Friday 17 May 2013

May 17 2013

Spoke with Holy Cross to see whether they had spoken with Southampton at all.  They haven't since Wednesday.  They said they couldn't change Helen's trachy because it is a different size and it needs doctor monitoring after changing.

Spoke with ward.  Trachy still not arrived.  Consultant said that she could go back to Holy Cross and them change it.  I explained that Holy Cross could not change it because it was a different size.  The nurse said that hopefully the trachy would be in soon.  

I told them that I would be down to visit Helen on 18/5.

Thursday 16 May 2013

May 16 2013

Spoke with ward again today.  Trachy still not arrived.  Will apparently be chasing again.  Asked them if she could be sent back to Holy Cross withtrachy she's got now and they will change it.  Said they will speak with consultant.

Seen by diabetes nurse again.  Off sliding scale.  Blood sugars still high.  

Wednesday 15 May 2013

May 15 2013

Spoke with ward is morning.  Her new trachy will be coming from Cornwall this afternoon after 4!!  They apparently had looked in her bag and apparently all there was is a plastic box with bits of trachy in!!  I explained that I was very frustrated with the situation.  If I had an explanation for why they changed the trachy in the first place it may not be so bad.  I do not understand why I was told yesterday daytime that they hadn't looked and yesterday evening that they hadn't looked and each time that it would be handed over to the next shift.  I had to tell them again what trachy she should have in.

The nurse today said that she would personally look in her bag and check.  A fairly simple 2 day visit is turning into another week!!

She is going for another CT today to check the shunt.

Spoke with nurse just before shift change.  The trachy still hasn't arrived!!  And the ones in her bag are size 6 not 7 so they cannot be used.  At least I know what the problem is and that someone has looked and given me a reason.  It makes it a tiny bit less frustrating.  I need to speak with Holy Cross now to find out why she went with size 6 trachies.  

Seen by diabetes nurse.  Sliding scale is being taken off tomorrow and normal insulin regime is being started.

Said I will phone again tomorrow to see how everything is progressing.

Tuesday 14 May 2013

May 14 2013

I called the ward to see how Helen was getting on.  

Her Trachy should be changed from 7.5 cuffed to 7 uncuffed today but they have to order a new one that is going to come from Cornwall.  I said that she probably had one in her bag but they hadn't looked.  I called Holy Cross and told her and she confirmed that there were 2 new ones in her bag.

BM stable, temp stable.  She had no feed from 4am for the trachy procedure then put back on feed when it wasn't going ahead.  

Monday 13 May 2013

May 13 2013

Spoke with Neuro ICU and spoke with the nurse looking after H.  She has been for her shunt revision.  All went ok.  Shunt is working well and draining.  Her head has been shaved again on the right!  Trachy changed for a cuffed 7.5.

Hoping Helen will go to a ward for the night but no beds are available at the moment.

She will be going back to Holy Cross tomorrow, all remaining stable.  Holy Cross need her trachy to be changed for an uncuffed 7 before she goes back.

Her blood sugars are stable.  She was off feed from 4am to 1pm ish (according to the nurse). She hasn't had insulin yet today and may go back on sliding scale for tonight.

Sunday 12 May 2013

May 12 2013

Helen was still in bed when I got there.  She looks really comfy.  She's not sweaty and her spots seem to be clearing well. She still sounds chesty and has sputum round her trachy.

I thought her head seemed a little softer than before. Head seems to have more fluid building again.  ?shunt working properly still.

I came down after having coffee and they had changed her position and her head was definitely more rounded, almost to normal shape and her consciousness level has decreased.  The Doctor was called then the ambulance was called. The Doctor arrived at the same time as ambulance and agreed she needed to go to straight to hospital.  They took her to to Royal Surrey again.

She had X-ray chest, abdomen & neck done and a CT brain done. Results show chest, neck & abdomen ok but CT brain shows shunt blocked somewhere.

Helen was very pale, especially her lips. She was freezing cold to touch.  She woke suddenly with a start and almost looked her usual self.  Then she has gradually drifted back to a less aware state, almost unconscious.

There were discussions about whether to transfer her to neuro at St. George's, London being arranged or to Southampton.

Transfer to Southampton Wessex Neuro ICU for revision of VP shunt. Seems more alert than earlier. Operation won't go ahead tonight, they will decide in morning.

Tuesday 7 May 2013

May 7 2013

Helen has apparently been diagnosed with a condition called Collagenous Colitis.  It is a form of inflammatory bowel disease.  It would explain the bowel problems she has had!!  It was on the discharge from Southampton General but I don't know if they had a copy in the notes or whether it had been filed upstairs. 

I said I would send a copy to Holy Cross, along with information from Crohns & Colitis Association about the disease.



Sunday 5 May 2013

May 5 2013

Visit with Theresa, Rachael, Jonny, Isaac & James.  Helen looking good today.  She's not sweaty and not uncomfortable looking.  They came to weigh Helen but the new chair doesn't fit on the scales properly.  They will weight her later on the old chair before she goes to bed.

We took Helen outside in the sensory garden then up out onto the verandah.  Her sunglasses fitted today.  Her head control seems slightly better than previously.  She seemed to like the sunshine.