Sickness & Blood Transfusion

Dylan got moved off the high flow oxygen yesterday and onto a regular nasal cannula at just 1ltr which was fab progress. He has been more lucid each day and said 'I love you' in response to both me and Daddy yesterday which was amazing to hear. He has been laughing and smiling more. He is still very weak and struggling to move his arms and legs and support his head so we've got a very long road of physiotherapy ahead of us and it might take a long time before he is strong enough to walk again.

We got a phone call at 3.30am this morning because he was distressed, his heart rate and blood pressure were sky high, his sats were low despite his oxygen being turned up to 2ltr and he seemed to be working harder with his breathing. He had also been sick a few hours previous. X-ray were called but everything was fine, we eventually managed to settle him off to sleep but he woke up a few hours later in the same state. We struggled to keep him calm whilst awaiting his next lot of Oramoph and Clonidine and they gave him some anti sickness medication which really helped him. Sickness is a part of the drug withdrawal process though so it was to be expected that as he woke up more he may experience more symptoms.

They took the last remaining chest drain off suction during ward rounds as there had been a concern that the suction was now keeping the leak open and preventing healing. He had a 3/4 hour nap during which his CO2 level crept up as he wasn't breathing as effectively, they did an X-ray just to check and all looked fine and once awake his CO2 level came down so the chain of thought is that he is perhaps too sedated now so when asleep it lowers his respiratory drive. The decision has been taken to start to wean down his medication to combat this so he may experience more withdrawal symptoms unfortunately.

He continued being sick throughout the day so is currently nil by mouth. Tomorrow we will look at feeds again or another alternative if he isn't tolerating them still. He has also had his third blood transfusion today as his levels were low this morning so this might help to give him more energy. Unfortunately with being pregnant I cannot donate but it will be something I look into afterwards and I know Mike already has.

There has even been talk of moving him back to a ward potentially.. if ICU need the beds they are happy he is stable enough to be nursed back on Oncology but he will be put into a side room this time for his own safety which is good news and certainly puts him at much less risk of infections.