After all the heartache and hard times over the weekend we are having a much more gentle time. Benjamin is doing okay. His blood pressure and Heart rate is okay and seems to be improving with time. He is on a muscle relaxant and sedation cocktail so that he is able to heal. His poor little body is filled with endless wires and infusions to the point that they have to turn one of to put short term antibiotics in. Unfortunately Benjamin has developed NEC. Necrotizing enterocolitis. It is a condition that affects the gut lining and can be very serious. The doctors believe they caught it early though.
Benjamin will need 7-14 days of three different antibiotics and will have to be put on TPN , which is a form of glucose feed and lipids ( Fats ) and his feed will be introduced very slowly. It is unfortunate but with everything he could have experience its a small set back. At least I hope to god it is.
Its a difficult time as Benjamin is just lay in bed and we cant see his cheeky little smile or watch him assess everything around him and we are still unsure on the prognosis and future for him. I had a quick chat to Michelle, who has spend quite a bit of time caring for Benjamin and the general feeling is that they are happy with his progress and that at the Cardiac meeting on Tuesday , everyone gave a big sigh of relief and just assessed how he performed after coming off the Echmo machine. No long term plans were made. I guess they weren't completely sure he would actually make it through the following 48 Hours.
On Thursday 17th March they took off his paralysing medicine and he woke up with quite a start , and he did not cope well. He became very mottled and his heart rate soared. He kept moving about and trying to open his eyes. It was quite distressing so they paralysed him again. I was overwhelmed and cried again. I didnt want him to be scared but I also wanted to hold him and kiss him better.
On Friday 18th March they tried again and he responded much better and much slower. He wiggled and stretched his fingers allot. He eventually opened his eyes a little and kept smacking his lips together. It was very cute and didn't seem so scary. I held his hand and he squeezed my finger really tightly. He was obviously sleepy but aware enough to know that I was there as he wouldn't let go of my finger. I feel comforted by that and hope that tomorrow he will be awake a little more and I will be able to wash him and dress him.
His stitches and drain sites are looking better but they are stitched on top of the skin again and two of his chest drain sites are quite puckered. The skin has been broken so many times now there will be no way it will ever smooth down. I hope he doesn't feel conscious of them when he grows up. When I left him after evening rounds he was sleeping and he was breathing above his ventalator. He was making a great effort. what an amazing little man to go through what he did and still be with us!
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