May 15th - The Care Conference Report

Hello everyone,

Yesterday (Thursday 5/14) we had a Care Conference with Carter's Attending Pediatrician, his Resident Pediatrician, his Cardiologist, his GI doc and a social worker. Never in our lives have we met with any doctor for 75 minutes let alone 4 docs and a LCSW but we did this time.

We talked about his current progress and talked about developing a long term plan. Carter is doing better each day despite occasional setbacks. The goal at this point is to try to stabilize his oxygen needs so that he can come home before his surgery. The cardio docs would feel better if Carter was bigger before surgery. He would do better in surgery and would have a quicker recovery if he were a little older and a little bigger. They mentioned they prefer a 3-6 month old infant unless Carter can't progress then that date would move up.

In order to try to get him to a point where he can come home, we collectively are working to achieve the following goals:

• Move his NJ feeding to a NG feeding and make sure he can tolerate the food in his tummy. For Carter, this is much easier to say than to do.
• Stabilize his oxygen so that adjustments don't need to be made at home as often as they are in the hospital.
• We did ask that if they choose to make a change, that we make one change and see how he does and they agreed.
• He must gain weight consistently despite the diuretics.
  

Heart Surgery:
The cardio docs don't want excess fluid around his heart and definitely not in the lungs. Carter is on four different diuretics to rid his body of excess fluid. They have also increased his feeds to 28 m/l per hour at 30 calories per ounce to give him the energy his body needs, and allow him to gain weight while on four diuretics. They are at or close to the max caloric intake a baby Carter's size can have so if he can't gain weight, that would be a setback and could move his surgery up.

When we called last night, (5/15) he still had an accumulation of fluid in his lungs that isn't going down so we'll see what happens on Monday.

In summary, the long range plans at this point are:

• Have Carter gain weight daily and have steady O2 needs so he can come home until surgery.
• Carter doesn't progress and heart surgery comes sooner rather than later. In this case, he likely won't come home before surgery.

Either way, we're probably 2-3 weeks at the earliest before Carter can come home and also about 2- months away if he doesn't progress and needs to stick around for heart surgery.

As has been the case, all this is subject to change without notice as Carter responds to the treatment.

We truly do appreciate all of your love, support and prayers.

Love,
Alan & Kristi