Hannah's Progress & Surgery

Hannah surgery is booked for the 7th Dec, 2006

I will keep you posted to on how she gets on, at the moment we are hoping she doesn't get a cold before she goes in because they wont do the operation. It will be another wait for a date.

Hannah came home early from school today fri 1st Dec feeling unwell, I thought the surgery would have to be cancelled but a quick visit to the doctor and he declared her fit and well. I think Hannah is worrying about her surgery and getting a bit worked up about it.

5/12/06 Hannah is all ready for her op the bags are packed, matthew is sorted out with where he's staying, I've prepared my workload at work and the hospital rang to say Hannah sugary is cancelled till next week. So we have to go through this all again. Have to reorganize our secludes and start over again. Hannah is very upset and so is Matthew. I'm stressed out of my head and exhausted.

Hannah surgery is booked for the 14th Dec, 2006

Wed 13th December 2006.  Arrived at the Children’s surgical ward at St Mary’s Hospital at 8pm. We decided to go down night before Hannah operation so we weren’t setting off very early to get to the hospital for 7:30am. We were able to stay on the ward unfortunately we only had one single bed between me and Jamie so one of us had to sleep in a reclining chair. Hannah couldn’t eat from 2am or drink from 6am. The hospital is so warm even when you open the window turn the radiator down.  We had use of the kitchen on the ward so we were grateful for the large number of cups of tea and coffee we consumed.

Thur 14th December 2006.  Awoken at 7:00am. 7:30am Hannah was taken in a wheel chair by a porter to Carolyn Suite at The eye Hospital which is a bit of a rout march through St Mary’s Hospital, Manchester Royal Infirmary Hospital and 100y outside. Hannah was given another bed on Carolyn Suite and was taking every thing in her stride even though two of the children in the ward screamed most of the day. Hannah watched children’s TV with the flow of one doctor or another coming to see her before she went for her operation.

Hannah was taken down in the lift to the theatre at 8am she was very brave when they put the needle in her hand and as she had the general anaesthetic to put her to sleep. When they go to sleep is always hard for any parent Hannah took her glow bear in to theatre with her.

The next two hours were spent drinking tea and pacing around the ward until you get the call to say she is in recovery.  I could here crying as we approached but was relived to find it wasn’t Hannah.  Hannah was complaining about all the noise the child next to her was making. The only thing bothering her was the dressing they had put on her eye. The patch had to be there for 30mins. The recovery room was very hot & when they took the patch off I became faint. A combination of the heat, seeing the wound, relief it was all over and that she had come through the General Anaesthetic. Jamie was a star and stepped in to comfort Hannah as I recovered.

The eye was bruised and little swollen but you could see that there had been a great reduction in the tumour They had managed to remove two large pieces of tumour but unfortunately with NF Tumours you can never remover all of it all we can hope for is that it doesn’t grow back too quickly. Hannah was a Super Star throughout her Operation. Because Hannah had Surgery we couldn’t go back by porter in a wheel chair we had to wait for an Ambulance to take her Back to Children’s Surgical Ward. We waited 5 hours! Just before we left Hannah had Cream put in her eye. Within a matter of minutes her eye had ballooned to its original size and was still growing. I called the nurse she wasn’t overly concerned. After a further request they agreed to call the surgeon who looked at Hannah on her way to the Ambulance in the lift down. The doctor said “it looked like Hannah had had a bleed in her eye”. (NF Tumours because they grow on nerve endings are renowned for bleeding very heavily). We were allowed to go back to children surgical ward. In the ambulance we had to wait for it to re pressurise so we could drive over the speed bumps that took ten minutes the journey round the out side of the Hospital took 5 minutes. When we arrived at Children Surgical Ward the nurses weren’t happy with the increased swelling in Hannah eye. At this point Sue Huston one of the NF geneticist arrived to see Hannah and she was defiantly not happy with the size Hannah eye had grown too. The on call Doctor was called we had to get a porter to bring a wheel chair so we could go to A & E as this was quicker than him coming to us. In A & E we got to see all the Saturday night Drunks but luckily we were taken straight in to be seen. The doctor confirmed it was a bleed and took out some of the stitches from the wound in Hannah eye lid to allow the blood to flow forward out of the eye. The danger with this type of bleed is if the blood goes behind the eye. This can cause the sight in the eye to be lost and the eye to die. Hannah had to do an eye test to make sure her sight was still ok. She was being prodded and pocked to get the eye to open she was very brave and patient. Hannah had a patch and big bandage put on to soak up the blood. We return back to the ward.

Hannah never sleeps after a General Anaesthetic even though she would benefit from it she was worried about being able to see the TV so she could watch Emmerdale.  The doctor came over to see Hannah after an hour and remove the bandage and patch. The wound was left open to let the rest of the blood escape and so hourly vision test could be done though out the night. We went through tissues as Hannah eye had to be dabbed to catch the blood every few minutes.

Every hour on the hour throughout the night Hannah had too be woken to read the eye chart as far down as she could and have her eye examined, her temperature taken and every 4 hours antibiotics and painkillers. It all became too much at 2am Hannah wouldn’t read the chart so the nurse called the on call registrar who came over and wasn’t too sympathetic and tried to talk to Hannah as an adult all Hannah wanted to do was go to sleep she cried for the first time and wanted Jamie (who had gone to catch a few hours sleep) no one else would do so I had to go and wake him. It was an exhausting experience for all of us. Hannah was tired and wanted to sleep but we also wanted too know that her eye was ok.

Fri 15th December 2006. First thing in the morning the doctor came to see Hannah in his full cycling gear on his way into work. He was reasonably happy with the eye but we had to continue with the hourly eye checks and it was decide that we would stay in over the weekend. The Children’s Surgical Ward Closes for the weekend so we were transferred to Acorn Ward which is a general paediatric ward with infections etc which wasn’t ideal for Hannah open wound so we were given a side room. Jamie had to get accommodation in the nurse’s quarters as there was no room for him on the ward. The ward was not as nice and needed maintenance on it the paint work was coming off the walls, the water was cold and the bath and showers were broken and we had to go to the toilet in the dark! However the nursing staff were lovely which is all too familiar story about the NHS.  

Another night of eye test but every 4 hours.

Sat 16th December 2006.  The doctor wanted to see how much the swelling would go down by Monday and how the wound was knitting together on its own and if needed put some stitches back in the eye lid.

Friends were coming to the Trafford Centre for Christmas shopping so they were able to Bring Matthew Down. Jamie went to meet them and brought Matthew back to the hospital to see his Sister. Hannah had missed him and Matthew had missed us all. So it was lovely to see him for a few hours we are very great full to all the people who have helped. Matthew was staying at Home with his Aunt Bridget and when he got home the neighbours Jackie and Howard had potted the Christmas tree so he could decorate it.

Sun 17th December 2006. It feels like a different world in hospital you are cut off from it we don’t feel very Christmassy in here. We were allowed out for 10 mins for Hannah to have a little walk which was nice to get some fresh air for her she was worried people might stare at her eye.

Hannah had all her antibiotics and medicines so she could get good night sleep as she was fasting from midnight for her stitches to be put back in.

Mon 18th Dec 2006.  Woken up by doctor, taking photos of Hannah eye.  He wanted to show the team so they could decide if they were going to put stitches in.

8am we were taken back by porter to the Children’s Surgical Ward as they had re opened.

9am Sent for by Carolyn Suite so another porter off we went again thinking Hannah was having her stitches re done and another general anaesthetic. Rosemary Abbot the NF support worker came to see us which was a real support.

Doctor came to see us said quite happy with way wound healing and if any scaring they would fix it in the future. To continue applying cream to wound to help healing and we could Go Home. Hannah priority was having breakfast as she had been fasting since midnight. We have to return in the new year to check her progress and the swelling and bruising should all disappear.

We set off home managed to get back so I could meet Matthew from School and surprise him. He was please to have us home and brother and sister were fighting after couple hours so all was back to normal.

It was lovely to be home see the Christmas tree that Matthew had decorated and have a long hot bath and a good night sleep in your own bed.

Hannah has been so brave throughout her operation with the pain, sleep depravation, pulling her eye about and even when she saw her eye and said it doesn’t look very nice she still cooped and kept smiling a remarkable young lady.

Thank you too all of you who have sent cards and gift to Hannah and a big big thank you to friends and family who have been there for us all through this difficult time.

Send Hannah post to cheer her up by visiting Post Pals Thank you to all of you who have sent cards, colouring books, sticker etc to Hannah. She is very excited to see what comes in the post. You can also send Post to her ever understaning brother Matthew.

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