Changes

Hi everyone...

Anna's Boston trip was postponed today and they plan on flying her tomorrow (11/16/09.) There was no room for Anna on the surgical schedule so instead of making her wait in Boston they will pick her up tomorrow at some point and maybe get her on Tuesday's schedule-a lot of waiting. Overall though at this point Anna is doing good and remains stable.

Katie has been doing well also they are everyday increasing her feedings and as long as she gains weight and has no "clinical issues" they are planning on removing her ventilator tubes late next week, this can all change though daily. Katie looks very good and moves around quite a bit throughout the day-which is a good sign.

Now Nicholas... Well yesterday the doctors took an X-Ray of his chest and abdomen due to increased alarms throughout the last 3 days-alarms meaning that he is aggitated, irregularities in heart rhythm or breathing irregularities. X-ray showed some hazy appearance around his belly and bowel so they stopped his feeding and immediately put him on antibiotics to stop any infection that may be starting. This morning after repeat x-ray they believe that he has a bowel infection and may have responded to the antibiotics and they will continue this treatment over the next 7 days and continue to hold all feeds to keep the bowel quiet. This infection can come on over a few days, can be hard to diagnose , and is very serious so he is being monitored very closely. We are not able to hold him so that is very hard-I feel so helpless I just talk to him and tell him how much we love him. He does look good though and on examination has not had a "puffy belly," that is promising.

The stress and worry is overwhelming, everyday is exactly how the staff describes it to us, "a rollercoaster ride" for sure!!! So Louie will head to Boston tomorrow as planned so far and I will stay back with Nicholas and Katie. Nicholas's trip to Boston is postponed until his X-rays are normal and he is better. That is all the news I have to give, I hope everyone is doing well and we send our love to all of you. Thank you again for all the prayers, warm wishes, food, and gifts we still have such a long road ahead and appreciate all the help and support given.

God Bless and be well.

Love,
Sarah, Louie, Anna, Katie and Nicholas