Three hospitals in four weeks, but little Aimee is still smiling

Suffering from uncontrollable epilepsy, little Aimee’s life to date has been full of trips in and out of hospital due to a number of other underlying medical conditions.

But as her mother Michelle, originally from Lisbellaw, explains, this time round her family were all too aware that their little fighter’s life hung in the balance.

Now living in Whiteabbey, Michelle’s little girl was admitted to Antrim Area Hospital on June 23.

Her oxygen levels were dipping, her heart rate was very high and as her mum describes, her seizures were “all over the place”.

She had contracted a chest infection which quickly deteriorated into pneumonia.

Recalling having to watch her only child’s health degenerate before her eyes, Michelle says it was four days before doctors decided to ‘blue-light’ Aimee to the Royal Victoria Hospital’s Intensive Care Unit (ICU).

“This was her first time in intensive care,” Michelle explains, “It was a massive shock for us. Because of Aimee’s condition, doctors have often been quite surprised that she hasn’t been in intensive care before.

“We have been in and out of hospital so many times with Aimee. Normally I am pretty strong and can take it all in my stride.

“But when I saw her on the life support machine, I just thought: This is it. It was unreal.” Also suffering from scoliosis -- an abnormal, sideways curvature of the spine -- Aimee was fitted with a plaster cast across her chest eight weeks before her admission to Antrim Area Hospital.

Doctors had no choice but to saw this off in Antrim Hospital in an attempt to maintain her heart rate and oxygen levels.

She also had to get chest physio four to five times a day to help remove the infection on her chest.

“It would have been really sore on her ribs,” says Michelle, “It was so hard to watch.

“We have had to do it on her ourselves before, but the doctors would be more forceful than us -- they have to be to move it.

“On the first night, she was fighting with them -- resisting them doing it.

“So they had to paralyse her completely.” According to Michelle, despite her repeated pleas to have her daughter transferred to the Royal’s ICU, doctors insisted this was not a good idea.

“The doctor told me: ‘I don’t think we need to go to the Royal. That is the last thing you want’. Antrim Area Hospital doesn’t have an intensive care unit for children.

“But I was sitting beside her reading her medical notes and I could see what they had written -- ‘patient would benefit from support’. In other words -- life support.

“She was just deteriorating right in front of me.

“Her heart rate was far too high, she was on the highest flow of oxygen she could be on in a ward environment. She didn’t even have the energy to have a seizure.” It was only when another doctor took on Aimee’s case four days later that the approach to her care changed.

“He told me: ‘We need to be prepared in case we need to go (to the Royal)’.” Michelle explains.

Michelle had only left her daughter’s bedside for a few minutes to telephone her husband, Steven and deliver the news.

When she returned she was told her daughter was to be incubated, placed on a portable life support machine and ‘blue-lighted’ to the Royal as a matter of urgency.

“I didn’t know whether to cry or thank the Lord that someone was finally listening to me,” says Michelle, “Like all parents with children who have complex needs, Steven and I know Aimee inside out. We know every breathing movement and we know when something isn’t right. That’s why staff need to listen to the parents of children who are as sick as Aimee, because we know our children better than anyone.” Despite the indecision over Aimee’s care, Michelle says the staff at the Royal’s ICU were ‘second to none’.

“We were so used to being on Paul Ward in the Royal.

“This was the first time I was not able to sleep beside her -- that was the hardest thing. But they were brilliant in there. And I was able to stay in a side room.

“I was up two to three times each night to check on her. The nurses would look at me and say: ‘Are you all right?’. I told them I was well-used to being up in the middle of the night!” Aimee remained on life support for four days in ICU before doctors gave her the ‘okay’ to be moved to Paul Ward.

The next step in her recovery was to have her plaster cast put back on and a feeding peg into her stomach to replace the feeding tube she had been using through her nose.

But as a matter of course in Aimee’s story, this brought with it its own complications.

The plaster cast was to be replaced in Musgrave, with the feeding peg added in the Royal.

Both proceedures required Aimee to go under anaesthetic.

When the suggestion was made that both proceedures were completed under the one anaesthetic, a multi-disciplinary debate between consultants and doctors in both hospitals commenced.

“One hospital doesn’t know what the other is doing!” said Michelle.

“Surgeons wanted to put peg in first but that would have meant a six week healing period before the cast could be put on.” On July 6 Aimee was placed on the emergency list for her peg to be fitted.

But her operation was cancelled at the last minute because doctors feared she was “too high risk”.

Just a few days later though Aimee showed doctors what she was made of when she underwent both proceedures within a day.

And her family were relieved at the end of last week to be able to bring Aimee home.

But not before they had to make a return trip to Musgrave so doctors could make a hole in her cast in the event that Aimee would require CPR.

“It was only because I pointed this out that they realised the hold was required,” Michelle explained.

Now settling back into family life at home, the focus is now on regulating Aimee’s feeds again.

“Aimee will be wearing her cast now for a couple of years,” Michelle explains.

“It will be changed every five to six months because she is growing all the time.

“The consultant in Musgrave was concerned that the plaster cast is restricting her in terms of her breathing, so she can’t open her lungs properly and that may be part of the problem with the chest infection.

“It’s really a waiting game at the moment. If she gets another chest infection then we will know it is not going to work. The only other option would be spinal rods which she can’t get until she is four.

“We have just learned to take the rough with the smooth with Aimee.

“She will always be in and out of hospital.

“But she is smiling a lot more now that she is out of hospital again.

“It’s just all about making sure Aimee has a good quality of life.

“She is never going to be seizure-free. But we don’t want to fill her up with medicines that will leave her sleeping round the clock.

“We feel it is better that she has a couple of seizures a day that we can handle so that she can be awake and enjoy life.

“I bring her to the park, I take her to the donkey sanctuary -- she loves constant interaction. Before her cast went on I took her to the hydrotherapy pool in the hospice with her friend Lola.

“There is no point in being stuck in the house.” For now Aimee’s family are counting their blessings that she has pulled through her latest ordeal.

“We are so proud of her -- she wasn’t ready to give up just yet,” says Michelle.

“It just shows how sick she can be and still come out the other side smiling.”