Another update

 Ellie continues to decline. It is so painful and heartbreaking to watch. The TPN is doing its job, because she has gained some weight, but she’s having some horrible side effects. For the past three days she’s been extremely nauseous. Nothing seems to help and she can’t  eat anything. She has a rash all over, and her face is breaking out. She can barely stand for more than a few minutes. She has excruciating abdominal pain and nausea. Her quality of life is no existent. The things she loves to do- shopping, crafts, sewing , reading , hair, and makeup she doesn’t even have the energy for. 

I have been waiting for the healthcare company to get the needed information from her doctor so we can get her a wheelchair. This will make it easier to take her out of the house , especially when the weather improves. 

Another issue is that Ellie has been off of her anxiety meds and her anxiety is through the roof , which is exacerbating her symptoms. Last night she was up all night shaking. I tried giving her medicine to calm her down, but it didn’t even work. The isolation, in combination with not being on her meds, is causing her mental health  to spiral. 

While all of this is going on I have to work and also be there for my other two kids and not get lost in sadness over it all. I am incredibly blessed with the best classroom team at work and some amazing clients at my other job- so going to work is not as hard as it could be. 

Mike and I love Ellie more than words can even explain and she is in no way a burden. Also what we’re going through is only a fraction of how Ellie feels. I am saying this before I say that caregiver burnout is so real. Our lives revolve around Ellie’s care, hooking her up and disconnecting her from TPN on a set schedule and making sure she has everything she needs. A nurse in our home 3x a week and multiple deliveries of healthcare supplies every week. Since I work late sometimes, Mike takes care of most of it. This is also affecting our marriage. We barely see each other or have time to catch up or talk. We talked recently about being more intentional about  setting aside time to spend together. 

For my part time job, I just dismissed two clients. (I had four total).  I decided not to pick anymore up right now so I can have more time at home. I have faith that God will work  it out financially. Something has got to give. 

Last night we went out to dinner for Mike’s birthday. Ellie wanted to come. She was so sick she couldn’t eat and she just sat there. This was the first time our family has gone to dinner together since 2022. I can’t remember the last time we ate dinner together that Ellie wasn’t sick. Maybe before Covid ? Probably when she was in first grade. Something most people take for granted. 

It’s hard to believe that Ellie has to suffer until the end of May when her surgery is. Please pray for her that her date will be moved up. Pray for complete healing. 

Ellie and I continue to notice more and more people are dying from the same conditions that Ellie has. Most either die from their organs shutting down or from malnutrition or a combination. It’s scary to think about. 

I am continuing to trust in God with all of this. I pray  that Ellie may live without suffering.