Niamh was relaxed last night and today and didn't need any extra medication (nozinan and oral morphine). In fact, this afternoon she became noticeably more relaxed and we gave her a nice warm shower on an special mesh chair. She really seemed to enjoy it and did open her eyes a little.
Niamh is no longer absorbing food or water. Her medications have been switched to a syringe driver and thaloset. Not all her medications can be given this way so they have been adjusted slightly. Shes continuing to have morphine but the anti-sickness and anti-convulsion medicines have been replaced with nozinan and midazolam. This may have a more sedating effect but should be effective at stopping sickness and seizures.
We've all said goodbye to Niamh and accept the inevitable which, today, is one step closer.
Emilie has had a very busy day today and enjoyed herself playing making and swimming and tipping buckets of water over daddy's head.
Helene and Alex,
ReplyDeleteWe are in the distance, thinking, shedding a tear, hoping, wishing we could really share your pain. You have spared nothing in easing Niamh's journey, and we are confident that all your cherished memories will smooth the way ahead.
Love from Noel and Mary
I really wanted to write something to help you through the next few days but unfortunately I dont seem to be able to find the words. Thank you so much for sharing Niamhs blog with us, you have allowed so many people into your family through the good and bad times and even now somehow manage to draw the strength to share your emotions and cherished memories. I feel privileged for spending some time with Niamh and Emilie at acorns and send my love to all of you.
ReplyDeleteAlways in my thoughts and prayers Janet xx
Oh my goodness. It is too real; like others so hard to find words and nobody should ever have to say goodbye. You have helped her so, so much; nobody could have done any more.
ReplyDeleteLucy, James & Daisy
All in our hearts our thoughts and prayers. Precious memories how they linger. How they ever flood my soul.
ReplyDeleteLove to you all from Albert 'Tricia and Leah
Alex, it is so heartbreaking to read but also so heartwarming to hear you talk about your brave and beautiful little girl. Thinking of you all.
ReplyDeleteMartin Warnes, Hannah, Louis, Mackie
Vous nous avez donné une belle leçon de vie tout au long de ces mois. Quels mots pourraient apaiser votre douleur, je ne sais pas. Niamh restera toujours dans mes pensées et dans mon cœur, même si je ne l'ai jamais connue personnellement. C'est un petit ange auquel vous avez apporté tout l'amour et le soutien que vous pouviez. Puissent ces souvenirs vous aider à supporter les prochaines étapes. Amitiés. Christine
ReplyDeleteThinking of the whole family at this time, so sorry to hear how things have changed since I last saw you all. Stay strong. Love Nick + Pau x
ReplyDeleteToutes mes pensées vont vers vous,j'espère que tous ces témoignages que vous recevez vous apportent un peu de réconfort et vous aident à continuer avec autant de courage. Bien affectueusement.Claudie
ReplyDeleteje pense bien a vous vous etes des parents courageux ainsi que votre emilie vous entourez de tout votre amour votre chere petite NIAMH.
ReplyDeleteaffectueusement bien a vous
Anne Marie