Not such good news this time

Theo showed some symptoms that we could not ignore on Friday, so we spent Saturday at hospital and they ran a load of tests. It was fairly clear that he is retaining fluid - and an x ray confirmed pulmonary edema.

We are home again at the moment and despite the complication Theo is fine and happy - such a resilient child, I don't know how he does it - but we have a load more time in hospital ahead. grr.

I suspect that without the necessary cardiac drugs, Theo's heart is having a harder time and as the diuretics had been reduced to help his kidney function, the fluid is just building up in his body. For the last 10 days or so I have been feeling anxious that something is just not quite right with him and even wondering if I am just plain paranoid these days because I seem to worry too much about a lot of things. I feel comforted that my intuition is actually ok!

Congestive heart failure can affect many organs of the body. For example, the weakened heart muscles may not be able to supply enough blood to the kidneys, which then begin to lose their normal ability to excrete salt (sodium) and water. This diminished kidney function can cause to body to retain more fluid. The lungs may become congested with fluid (pulmonary edema) and the person's ability to exercise is decreased. Fluid may likewise accumulate in the liver, thereby impairing its ability to rid the body of toxins and produce essential proteins. The intestines may become less efficient in absorbing nutrients and medicines. Over time, untreated, worsening congestive heart failure will affect virtually every organ in the body.

I will be asking about our trip to Great Ormond Street this week and the transplant assessment.