Day 7

Part I:

Reuben is only feeling 3 emotions, sadness, fear and anger. I feel them all too right with him. His percussive breathing treatments are every 4 hours around the clock meaning they come around every 3 hours and it is torturous. There's room in his bed for two so I'm in beside him and the wake ups if he sleeps much at all, are too soon. The consensus is that the bronch in the OR could do more harm than good. I listened in on the Drs rounds, you pitch in when you can with information, and they will try bpap, continue cpap and percussive treatments to clear his lung, again very bad on the xray. He's on 20 liters of O2. We will take turns at night now because it looks like we are in for a long run and need resolve to give back to Reuben. I fear the trust he feels may diminish as he looks with his soulful longing eyes asking I want to go home...

Diagnosis: Atelectasis (collapsed lung) and likely viral infection.

Part II

Skype with my sister Geraldine and Mark, then with Reuben's teachers and classmates (bless them for each hugging the computer). Visits from Kathie Carlson and Elijah, Kristina Johnson and Margaret Johnson, teacher Rachel and Sherene Hulugalle whom I'd never met before today bearing big lunches, coffee, smiles, hugs and gifts. Texts and calls. So uplifting. Thank you. Reuben has tolerated the new treatment of 20 litres of O2 on bpap and I feel he's turning a corner with his heart rate dropping from the 160s to the 110s. His retracting chest is resting and his breathes are no longer full speed ahead. The simple words from his pulmonologist of "He'll get through this" meant so much, gave me back some strength after the appalling night. The morning rounds of the resident Dr verbally working through the scenarios with the attending Dr and team to try to ascertain a plan of care would have made a fascinating case study in problem solving, were it not for the case being my Reuben. The resident began, "Charge syndrome 4 year old child" and quickly rephrased this to "4 year old child with Charge syndrome". There is a difference. ENT had intervened to advise against an invasive bronchial procedure in the ER when his airway is already compromised post surgery and last week's trauma. He's being treated aggressively for a virus with antibiotics and we are gowned up with contact precautions. I feel a great deal of trust in his carers and the decisions they are making. I'm proud of how Callum is tolerating the changes and being so sweet. Reuben was of course unable to get up today, but when I left him this evening to take Callum home, I saw almost imperceptible to any other smile, but there.

These images are the most movement Reuben was able to make today. Callum has that wonderful effect on him. Such love.