I bet you all are having a fantastic life and enjoying every moment of it.
Our family drama is finally over. Our little man has had his operation and doing amazing, eating everything and making up for all those things he could never eat before.
He had his surgery on the Thursday and was in intensive care for 5 days after. He has a special line going in his arm that led up to near his heart, where food went it. Not food as you and I would eat but the base building blocks, fats as triglycerides, protein as amino acids and carbohydrates as glucose and these were fed straight into his blood stream for the body to use.
After 5 days he was able to go back to the pediatric ward, which was great. But he was now going through Refeeding Syndrome. This is where the body has been starved of food for a long time and when it gets it, it triggers the cells to uptake as much Magnesium, Potassium and Phosphate as it can. This can be fatal if not treated. Because only a tiny amount of food was getting from his stomach to his intestines, he was technically malnourished. So when they started feeding him through the pic line (line in his arm), his body went mad and started up-taking all the vital electrolytes.
The hospital had to stop the pic line feeding and start him on Phosphate, which was the fastest thing dropping. Once his Phosphate dropped too low it would bring down the others with it. So bringing the Phosphate back up was the vital step. This Refeeding Syndrome was quite severe for 2 weeks after the surgery with an almost constant adding of Phosphate. After 2 weeks, he started to get a temperature which ended up at 40c (104F) which was awful. They believed that he had got an infection through the pic line and needed to remove it, which they did and his temperature started slowly coming down. Now he was able to eat real food!
They started his off with ice chips, then icy-poles then custard. From there, it was anything he could get his hands on. They were giving him drip feeds as night still but he was able to eat normal foods. While they had the drip feeds on, his Phosphate remained low, but the day before we came home, they turned them off and just let him eat and drink food with a breast milk top-up. They wanted his Phosphate at 1.6 before they let him go home and when they turned off the night feeds, it was at 1.4. The next evening it had jumped to 1.55 and they let us go home.
We had to go back to the hospital 2 days later for another blood test and that came back with the Phosphate at 1.73 and he had put on 300g which was just awesome.
Now he is home, still needing the occasional blood test in the hospital, just to make sure things are heading in the right direction. Phosphate levels in children are supposed to be between 2.4 – 4.1 so he is still a little way away from normal but catching up quickly.
He is fully active now, eating nearly as much as the others already and as happy as a pig in mud. The kids love having him home and have just doted over him over the last week and we are starting to feel like a whole family again. Spending 3 weeks away from Hubby and the Family was really hard on everyone but we are all settling back into things nicely and Our Little Man being better is a wonderful thing.
Our lives aren’t quite back on track yet but they’re getting there slowly. I have reset-up the passport interviews for this week so things are still moving forward. This was not the adventure we were expecting but an adventure non the less.
Thank you all for your kind love and support and we looking forward to hearing all your wonderful tales of adventure.
Shalom Aleichem and all my Love to you all xx