The past week

 

The past week has been  stressful, but God continues to bless us in so many ways. Ellie felt her GI Dr wasn’t hearing her ,and so we were going to try and find a new one. She stopped her TPN because the formulation was making her so sick and miserable. In the meantime she was forcing herself to eat and drink, which of course, causes her a lot of pain. 

I spent many days last week going back and forth with doctors and nurses trying to figure this all out. I have a very demanding job as it is , and  then I’d spend my lunch break trying to advocate for Ellie. 

We were not too successful in finding a new GI Dr because even though shes so close to turning 18 (May 2) , she has to stay with a pediatric Dr. If we stopped with our current GI, he had already  put in orders for her PICC line to be removed. For her to see a new doctor and get a new line , this would’ve been a week in the hospital which I just can’t put her through right now. We weighed the pros and cons and I decided to talk to her GI doctor myself. 

I have allowed Ellie to do most of the communication because she’s almost 18 , plus she can speak best about what’s happening to her body. She is much more precise in her language than I can be. She also has more time to do all of this than I do. But for some reason, she wasn’t being heard, which is infuriating. 

When Ellie’s Dr called me I explained that her symptoms were in fact a result of her TPN. She couldn’t catch her breath, and she  was in severe pain. He had told her this wasn’t due to the TPN. I said that she stopped the TPN ,and all of those symptoms vanished, so obviously that was the cause. I said Ellie is not “all of your other patients”. She is a unique case and should be listened to and taken seriously. When a Dr uses the phrase “These symptoms are very real to you “ that’s a red flag that they think someone is crazy. I told him that she’s heard that her entire life and that’s not appropriate language to use. 

Ellie had requested she be put back on her original formula of TPN which runs over 20 hrs. She had been running it over 16 hours at a faster rate and she can’t tolerate it. He agreed and put the order in. Ellie is in her second day and so far so good I think. 

Ellie has been really joyous over all of the phone calls and prayers. This is exactly what she needed. She has been isolated at home alone for so long , she needs that connection. We are so incredibly blessed by this! She has also been spending more time next door at my parents’ house. Yesterday, my brother and his family came in from Maryland for the weekend and she spent all day with them. I am thrilled she is getting out of the house and wanting to socialize. 

My strength through all of this comes from God. I have been immersing myself in The Word and working really hard on setting aside prayer time. It has been life changing. In addition, I have drastically reduced my hours at my second job which has allowed me more time at home and with Mike. Mike and I started setting aside time one night a week to study the Bible and pray together and this has been great for our marriage. No amount of work or extra money is worth sacrificing my husband and family. God has really been revealing my priorities to me. 

I am seeing first hand how God can bless us and guide us in the midst of suffering and trials. I see people all around me suffering in one way or another and I will sometimes ask them if they’ve sought Jesus. Jesus is the ONLY way and he will break us to show us that sometimes. 

I love the verse John 14:6 

6 Jesus said to him, “I am the way, and the truth, and the life. No one comes to the Father except through me.

He is THE LIFE. We may seek out joy from everywhere else - sports, shopping, jobs ,our spouses, friends, hobbies, material possessions, our looks… you name it. But Jesus is the only answer and the only one to fulfill our every need.