Life Lately

Baby Ellie!!!! 

All of the germs from school finally took me down. I’ve been coughing since yesterday and last night I had  a fever. I am staying in the bedroom because I don’t want to risk getting Ellie sick. Her health is so fragile. Thankfully it’s the weekend and I hope I’ll be well enough Monday to go back to work. I don’t have many sick days and I am saving them for Ellie’s surgery. Last night , Mike went to help his brother plow snow to earn some extra money so he wasn’t here to hook Ellie’s TPN up. I was too sick so Dylan had no choice but to learn. I think he must have done an ok job because I didn’t hear any arguing!

Ellie continues to do ok with her TPN but has a lot of other issues bothering her right now. She has constant surface level pain all over her body which is making her miserable. She messaged her rheumatologist about it and I felt like her Dr responded in such a compassionate way. Here is the response from her Dr : 

Ellie is also having issues with her feet and legs turning purple. Her rheumatologist said it’s a condition called acrocyanosis. According to Google: Acrocyanosis is a rare, painless condition that causes persistent blue discoloration in the hands and sometimes the feet. It's caused by small skin blood vessels constricting, which reduces oxygen-rich blood flow to the extremities. The blue color is a result of the decreased blood flow and oxygen. Here is a photo she sent me :

Ellie is also getting an itchy rash on her body. I assume it’s a side effect from her TPN but we don’t know. She is also possibly suffering from some kind of obstruction because she hasn’t been able to poop. I wanted to have her go to the ER last night , but she refused. She tried at home interventions, but they still didn’t work. When she has her ileostomy,  that will give her bowels a much needed break. 

I feel bad because Ellie is just too miserable and sick to do much of anything. She’s goes to church when she feels well enough, but that’s not every week. She said she really likes it when my parents come over to see her. That’s just about every day! My mom has been so helpful doing dishes and laundry. When I work late nights, Mike has to cook dinner and do all of the driving - getting Annie to and from dance class and picked up from play rehearsal. Not to mention all of the snow he has had to plow and shovel this winter. Not only is she helping me out , she helps out my brother with his babies when she can. We are so blessed to have the support of our family and friends. 

I am also so thankful that Ellie takes the reins on her healthcare. She is the one messaging doctors and making phone calls. It is very time consuming. It’s not that I don’t want to, but I could not possibly work without Ellie doing those things and my mom helping her out so much. I look forward to summer, which I will spend taking care of Ellie after her surgery and hopefully getting to get out some too. 

I was reading the obituary of a young woman who has all of the same diagnoses that Ellie had. Her body just would not respond to multiple surgeries or any source of nutrition and she had to be put on hospice. It ripped my heart out of my chest just reading that and realizing that is a reality for many people with vascular compression. I pray that Ellie responds to her surgeries and can go on to manage her pain and other symptoms. 

My younger brother texts me about twice a week to check in on Ellie and to tell me he is praying for us, along with his friends at church. We are so grateful for all of the prayers that we are receiving from all over the place. People who we don’t even know! I appreciate the people who take the time to check in and see how Ellie is and offer help or prayers. I do understand that since Ellie has been sick for so many years, people get burned out from hearing about it. Me too! I am making an effort not to get too consumed in our issues that I forget to care for and love those around me. There are so many people around me battling health issues such as cancer, chronic conditions, financial problems , job issues , etc. I am convicted to work on my prayer life and be more intentional about that. 

We have to keep our faith, and our humor. I thought I needed to share this.  Anyone who knows Mike and I know that he does all of the outside work and anything inside like repairs , putting things together, etc. He’s always taken care of me that way. The other night, I got home after work and the snow was too deep for the dogs to go out. Dylan wasn’t available so I HAD to go shovel snow. I was so proud of myself and felt like I was strong and moving really fast. Until I looked at the Ring video! I look like a 90 year old woman slowly picking up a little snow at a time. 🤣🤣🤣🤣🤣. I know that’s not related to Ellie in any way, but I got a good laugh. 

I hope this link works : https://ring.com/share/7e4c6b74-54b8-415f-b39b-efaff5e42869

If you would , please comment any prayer requests in the comments on this FB post so I know how I can be praying for you as well!