Monica McDermott has never seen anywhere other than the four walls at Royal Manchester Children’s Hospital, but there are plans in place for her to have a phased return to her Holme Slack home in the coming month.
The 15-month-old is currently under the care of the hospital with kidney and liver failure after suffering from severe sepsis. She was also born with an imperforate anus.
Her condition means she needed to be fed through a tracheostomy 24 hours a day and her breathing has been aided by a ventilator.
But she has been making great progress in recent weeks, with plans for a phased return home to be with her parents, Emma and Michael, and her siblings, Sean, 10 and Megan, five.
Emma, 29, says: “Monica came off dialysis in September. Her kidneys have improved a little bit and she has been off her ventilator for three weeks.
“We are now in talks for her to be discharged, but we need to get her to the point where she is not needing to be supervised and fed at night. She is currently being fed 27mls of milk through a tracheostomy a day, but we need to increase that to 40mls for 16 hours so she is not feeding at night. When we increase her milk, she starts to vomit so we have to reduce it again. It is not safe for her to be feeding at night with no-one watching her.
“At the moment, it is really stressful, especially with Christmas.
“Once her feeding is sorted and she has had surgery to reconstruct her imperforate anus, we hope for her to come home in the new year.
“We will then look at the possibility of taking her tracheostomy out.
“When she is ready to leave Royal Manchester Children’s Hospital, we will visit Royal Preston Hospital, so she knows people there as we go for future appointments.
“While we are excited, we are also very anxious for her to come home. She has not been home in 15 months and it is scary to think she is coming home without a care package.
“We had applied for a care service so we would have carers every night during the week, but now we are doing it on our own.
“Monica is on oxygen continuously during the night and once she stops feeding overnight things will be a lot easier.
“I would rather try to have a normal life and look after her myself rather than having strangers in the house, I would feel like we were in hospital.
“I would be on my own during the day as Michael works, but everything is quite simple now. She is on a nebuliser every hour until 11pm to keep her airways open and she is not on as much medication now as she used to be.”
The family was dealt a setback earlier this month, when Monica was scheduled to visit for a day, but had to remain in hospital following an infection.
Her dad Michael says: “It looks like Monica had caught an infection, which gave her a high heart rate and a high temperature.
“It was really disappointing not to have her home, but we are hopeful it will pass and we can get back to normal again and plan for her to come home for a visit in the new year.”
Sean and Megan are equally excited about the thought of Monica coming home.
Emma adds: “It has been very hard for all of us. I feel like we are getting into a routine now. Our life is different to how it used to be.
“It is weird because I feel like we are two different families. There is Michael and the two children at home and me at Ronald McDonald with Monica. We only get together once a week. Sean and Megan have been okay.
“Sean is the eldest and he gets on with it, but Megan finds it hard. I come home every Friday and she never wants me to go. For the past few weeks she has started to cry when I go. That really hurts me as I don’t want her thinking I am picking Monica over her. But once I am gone, she is okay.”
Emma adds that, despite the medical tubes and aids, Monica is happy and developing well.
Emma says: “If you couldn’t see the tubes, you would think she was a healthy child. She is behind on her development and she is only 12lbs, so looks like she is six months, but she is getting there.
“She is really happy and good at night time. She has started to roll over on her tummy, which she doesn’t like. It is good to know she is coming home properly soon. We can’t wait.”
As Emma and Monica have spent the past 15 months at Ronald McDonald House at the Royal Manchester, the family is hoping to raise £5,000 to support its facilities and sponsor a room in Monica’s name.
To make a donation visit www.justgiving.com/fundraising/emma-mcdermott8