Beeping Machines & Sleepless Nights

As we reach the end of our first week back i hospital, we firstly just want to say Thank You to every single person who has made a donation to the Go Fund Me page, we are truly grateful and every £ will go towards ensuring Eira has the most comfortable future possible.

This week has been much different to the previous few spent in Ty Hafan, after just a few hours the claustrophobia certainly crept in. The noise of the machines, the other children on the ward and the general commotion that comes with a busy hospital ward certainly brought back feelings from Intensive care just a few weeks ago. On the plus side, we do have a room of our own which means privacy is better than a shared room, and the doors help us block out some of the noise.

Just one of is allowed to stay with Eira overnight, on a pull down-bed, and the first 2 nights of the week were difficult as there was no accommodation available for us at the Ronald Mcdonald House, which became available on Wednesday. Even when sleeping on a comfy bed, we have both agreed its difficult to switch off, and Eira is always at the forefront of our mind.

Everyday this week, we have had visits from the doctors and neuro-team who have been monitoring and assessing Eira and adjusting the medications she is on to try and find the perfect balance between comfort and medication. We have also had he physio team visit everyday for various stretches and assessments, not all of which Eira has enjoyed. The doctors are continuing to do whatever is required to give Eira the best chance of recovery, and what the future looks like for Eira is still very much an uncertainty at the moment, with time being the only consistency. We are unsure how long we will have to stay here at Noah's Ark Children's Hospital for now, but the hope is that when the time comes we will be able to be discharged directly home.

For the first few days, we were very restricted in that we couldn't take Eira off the ward on our own as we hadn't completed our BLS (Basic Life Support) training, as the week went on, even the doctors were keen for us to be able to go out for a walk, and they ensured that before the weekend, we were able to complete our BLS training. Even better news was that the pushchair we were waiting for from a charity called NewLife had arrived, and thanks to Alice from Ty Hafan, we have been able to make use of it this weekend, even if it was just down to the concourse area.

One thing that definitely has not changed since Eira's illness is her appetite, always one for food, Eira has gone from barely finishing one food pouch a day, to getting on to her third one, in the space of 4 days! That along with the increase in her milk feeds via the NG tube means her weight is being put back on brilliantly, with her swallowing seemingly improving everyday.

We have also had the opportunity to have a detailed explanation of the MRI scan that was done on the 14th April, Dr Sylvia & Dr Hina kindly showed us the scan on a large screen and talked us through each 'layer' in detail explaining what we were looking at, in terms of light and dark areas, and also what that area of the brain is known to control, specifically, the stem, which controls breathing. In Eira's case, there was so much 'white' in that area that any doctor looking at that now would assume that Eira would not be able to breath on her own, but as she has shown, she is fully capable of that. An echo and ECG of the heart also confirmed there were no concerns in that area.

With a Bank holiday this week, we won't see most of the teams until Tuesday for any further physio etc, although the doctors are around everyday making subtle changes to her medication if required.