Home, Sweet Home for the New Year

I am so sorry for the lack of updates! We were able to buy our way out last Friday. The doctor wrote his discharge orders at 11:30. The nurse had everything ready and prescriptions filled by 2:00. However, we were informed that we would not be allowed to leave until the Home Health Company delivered some supplies to the hospital. I asked if we could just have them delivered to our house, but home health insisted they had to come to the hospital. We waited and waited. The nurse and charge nurse,and case manager called repeatedly. Home Health finally got to the hospital at 8:00 Friday night!!! To say we were annoyed is an understatement!

I spent all of last weekend and the majority of the week trying to dig myself out from the load of work that happens from being gone for 3 weeks and Christmas combined! We were able to put the house back together and I was able to catch up on my household stuff to the point that mid week, life started to feel a little bit normal again!

Where we are now...

Bruce continues to look for work. Late this week he had some good leads and we are praying he finds an amazing job with amazing insurance soon. We did have a little "excitement" when Bruce's former company cancelled our COBRA insurance. You know the one that we pay $1780/month to be sure the kids health is not affected! We are hoping this is fixed by Monday as we have already had to cancel 4 appointments because of this mistake.

I have some exciting and unexpected news! Several years ago, I was approached by one of Alex's supply companies about joining them as a consumer advocate. At the time, Maddy was an infant and it was not the right time. In November, it came to my attention through multiple sources that they were looking for an advocate again. I applied and after 4 lengthy interviews i was offered a job the week of Christmas. This is a really unique situation because I can work from home about 15 hours a week. They completely understand my life and can be flexible about appointments and hospitalizations. I officially start Monday. I am excited to begin this new chapter.

Alex is still not back to 100%. He still has pancreatitis and is still struggling with pain. We have not been able to get feeds restarted. His energy level isn't great, but not entirely unexpected after 2 surgeries, sepsis, and pancreatitis in a months time. It is nice to see a smile on that face and we have managed to get him out of the house a few times this week. We are hopeful he feels a little better this week as several of his activities restart this week.

Maddy had a really hard time emotionally with Alex and I being gone for so long. She is still pretty clingy and wanting me to do everything for her. We are excited for her to get back to dance, school and therapy this week as I think it will help her feel like things are more normal. She has been struggling with daily leg pain so hopefully we can get that sorted out.

We have a large amount of appointments this next few weeks as we follow-up with all of the specialists we were followed by in the hospital.

We are so very grateful to everyone that has supported us in countless ways over the past month. We head into 2018 with hope that it is a year full of health and happiness.

Ali