Acorns Hospice

After a very difficult week, the last three days have been a little kinder to us all.

Wednesday, Niamh struggled a lot with headaches, itchiness, feeling uncomfortable. She fell asleep around 10.30pm but woke up a couple of hours later. She spent the whole night in our bed sitting up, refusing to lie down, moving her arms uncontrollably and unable to rest. It was a tough night. In the morning Alex took her to A&E. We wanted to know whether the neurosurgeons were planning anymore regarding her shunts and if not if we could increase her dose of painkillers. The neurosurgeons said that they didn't want to do anything as it was too early, but to keep her very hydrated. The oncologist consultant decided to replace the oral morphine she was on about 8 times a day with MST, a slow release morphine which is given every 12 hours. They said we could give Niamh more piriton (anti-icthing medicine) throughout the day, from every 8 hours, we could now give it every 4 hours.

By midnight on Thursday she was still awake refusing to lie down and moving her arms uncontrollably. Alex took her to A&E then, Emilie and I followed a couple of hours later. The doctors were very concerned about her. Were her symptoms due to the tumour progression or could they partly be side effects from the morphine and piriton? On top of everything, her heart rate was very low. They decided to give her some buccal midazolam, an anti convulsant drug. She fell asleep within minutes. It was amazing to see her calm and peaceful and be able to kiss her cheeks once again. She slept for about 5 hours. By the time she woke up around 9am, she was a little calmer than the day before. Yet within a couple of hours, the uncontrollable arm movements were back. The doctors then decided to put her on nozinan, a type of tranquilizer. She had a dose at 1.30pm on Friday afternoon. Within an hour, she fell asleep and remained asleep till the next day at 6.30am. Before leaving the Children's Hospital around 4pm on Friday, we had the opportunity to chat with the oncologist Consultant. We expressed how difficult we had found the last few days not being able to control Niamh's pain. They said that they had struggled as her symptoms seemed to get worse so quickly. He explained to us that the end of Niamh's battle may be sooner rather than later.

On Friday afternoon we moved into Acorns Hospice, the best decision we have ever made. It is a beautiful place, with a lot of very kind people. They have given us a family flat upstairs, as well as two adjacent bedrooms downstairs. Niamh's bed was made with Peppa Pig duvet covers and she has a Peppa Pig poster with her name on, above the bed. The last three days have been incredible. Niamh has been gradually getting better. We had a few smiles today (we had no smiles at all last week). She is still struggling with the itchiness and uncontrollable arm movements but she is managing a lot better. She hasn't needed any tranquilisers since Friday. She falls asleep on her own. We all sleep together as a family. The nurses (who are dressed in normal clothes) have taken over the medicines so we can all sleep at night. Our days are all about spending time with the girls. We have made use of their hydrotherapy pool every day since we have been here. When we go in we have the pool to ourselves, they put some nice relaxing music, lights off, and Niamh loves it. She is so calm and relaxed it is wonderful. When her lines came out a couple of weeks ago, both Niamh and Emilie were happy that they would be able to go swimming together again. On Friday we didn't think we would get the opportunity. Now we have been THREE times and if all is well we will continue to go every day. Acorns also has a multisensory room which is good fun and the most amazing garden. We have been able to take the girls out a lot.

So last week was horrible, these last few days have been a little nicer. Niamh is unfortunately not the child she was two weeks ago, she has lost a lot of her brightness and sparkle. Yet she is amazing us all once again by her sheer determination. The last few days have been so special. We are grateful for every minute, hour, day we get to spend together as a family. Emilie is doing well, she says we are on holiday in Acorns. She has everything she needs here, even a 'making room'. Most of the staff already know that she wants to be an artist when she grows up.

http://www.acorns.org.uk/our-hospices/acorns-in-birmingham