Maisy update

Maisy's surgery went well. Her old pacemaker came out and the new one went it without much complication. Her pacemaker is in her lower abdomen because she does not have enough room in her chest area to place it near her heart. The surgeon came into the room saying he had both good news and bad news. Not always what you want to hear from a surgeon...He said the good news was that surgery went fine. The bad news is that she has several holes in her abdominal wall that he didn't know what to do with. Maisy  has unusual skin and bone to say the least. She has developed unexplained "fistulas" i.e. holes in her skin before. Most likely, when she was an infant and they placed her first pacemaker, her skin was just still quite fragile.

What all of that means is that because of all her surgeries and the amount of scar tissue that she has built up in her abdomen, there is a likelihood that she will develop an internal hernia where the holes are. It may not happen but it certainly could. He did not know what to do with what he saw...she is a mystery in so many ways. But, for now, she is doing well.

She is in the new cardiac unit at Minneapolis Children's Hospital. It is so beautiful there and state of the art. They will proceed cautiously with increasing her feeds because of the area where the pacemaker is implanted. She will be at the hospital a few days.

Maisy came out of surgery very agitated, in part, because she tolerates very few pain medications. We only have one that seems to work and does not make her agitated. It is sad to have had so many surgeries in your little life, that at only three years old, you can have used up most of the potential medications that are intended to help you. But, it is also miraculous that she is alive and able to have such an issue. Most of the staff in the Cardiac unit know her well. They knew her as a baby..a very fragile baby. It is clear to us that many of the staff were really amazed at seeing Maisy--not only because she is doing so incredibly well, but even in the fact that she is alive.

God has taken his fragile little girl and made her into an outgoing, joy-spreading, bossy, walking miracle. This photo is taken after surgery...and she is not happy because I am not wearing my "hat" just the way she wants me to! I guess that they call that "back to baseline..."
Thank you for your prayers~