V has had a setback. We were supposed to be going home today but after the drainage tube in her chest was removed yesterday morning, fluid began draining from the bottom of her incision where the skin tissue was already poor quality. Over the next few hours the stitches gave way at the bottom, the incision separated, and a lump formed between the pacemaker and the incision that had not previously been there.

V needs to continue IV antibiotics. They attempted to set a pick line four times and were unsuccessful. That was followed by two attempts to place a regular IV. Those were also unsuccessful. I made them leave and give her a break. Unfortunately it is necessary to get IV access so they will be back later to set a regular IV today. She has finally learned that nurse mean pain and she screams every time one of them touches her now.

Many doctors have been in to look this morning including her new surgeon, Dr. Christianson. Plans have changed rapidly, frequently, and often without our input or knowledge. We respectfully but firmly requested (read demanded) a halt to the madness, access to the information being tossed about, inclusion in the descisions being made about our child, and a second and third opinion. In short, there have been several doctors weigh in and a hospital administrator has been called.

The fact that the incision has separated is not good. We are starting down worst case scenario path. The knot that is forming is a hernia that has developed because of the pressure caused by the pacemaker. The leakage is fluid from her abdominal cavity. They determined she was stable enough to wait until tomorrow for surgery but she will likely be having surgery tomorrow involving cardiology to inspect the integrity of the device, general pediatrics to repair the hernia, and plastic surgery to attempt to keep the wound closed this time.

Once again, please keep V in your thoughts and prayers. Wish her some luck. She needs a break at this point.

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