June 03, 2003
The day we have been awaiting is finally approaching! The Mott doctors have given the discharge orders for Meghan—June 4th.
There are many things that had to fall into place for this day to come upon us. Ellen and I had to perform trach care (change trach ties, change the trach, and various other trach related issues). We then had to take ventilator training to basically become Respiration Therapists. The electrical in our home had to be upgraded to the specifications of the home health care company. We had to hire a nursing agency and have them find nurses to fill all the time slots we need. Meghan needed to stabilize and show signs that she was getting better to give the doctors confidence that she was ready to be released. Lastly, we had to do our “overnight” with Meghan at the Med Inn Hotel.
The final test to see if we are ready to care for Meghan is the “overnight”. It puts all of our training to the test. This past Saturday night, Ellen and I pushed Meghan in her hospital crib (with ventilator, oxygen, emergency respiration bag, g-tube feeding bag, trach care supplies, car-sized battery for back up power, suction machine, heart/blood oxygen monitor, and much more) to our hotel room. Preparing to go is a huge process! Although we were somewhat nervous about the overnight on our own (without medical assistance), we felt very prepared. The night was very encouraging to us. Meghan was very excited to be out of her hospital room…she paid little attention to us because she was to busy exploring her new surroundings! Meghan did very well. She slept the entire night…and did not awake until we were pushing her back to the hospital room! The doctors were pleased to hear that we passed our overnight test with flying colors (Meghan, thanks for being easy on Mommy and Daddy!)
So, everything is set for her discharge…We have completed our training, our home modifications are complete, the nurses are approximately 75% in place, and Meghan is doing pretty well. Our biggest concern is the nursing situation. We were approved for 16 hours of nursing per day. Most weekdays and nights are covered, but many of the weekends have large holes in them. For example, Father’s Day weekend has a three-day gap without a nurse covering (Friday-Monday). These holes will mean little sleep for Ellen and me. The nursing agency is still hiring nurses. If anyone knows any good pediatric nurses that would like to pick a shift or two per week (or weekend), please call or email us. We will give you all the information to contact the nursing agency. The agency will provide trach and ventilator training if they have had no training in those areas.
Meghan’s biggest challenge lately has been gaining weight. This has remained a consistent challenge since she developed health problems back in November/December. She vomits several times per day and the doctors have been busy trying to determine why this is happening. The answer may be to extend her g-tube to her jejunum (small intestine). Doing so may ensure that she is getting all her nutrients, as she will not be able to vomit her formula. Hopefully, this will allow her to gain weight.
Meghan will arrive home to a happy bunch of kids! Lauren, Michael and Shannon have been so good during these long, stressful days. They have endured tons of emotional swings, long durations without their parents, and being bounced around from place to place while we were at the hospital. I think they will be the happiest kids in Michigan when Meghan finally comes home to stay!
Please keep us in your prayers this week. Ellen and I are not sure if this is the beginning of the end of Meghan’s recovery or the end of the beginning. Only God can determine that. Faith and prayer has sustained us so far. And faith will see us through until Meghan fully recovers. So, continue your prayers for Meghan’s full restoration of health.
Please visit the website a few days from now for pictures of Meghan’s big homecoming! We love you all!
Mike and Ellen