Latest update with Ellie

 First of all, I want to thank everyone who has signs up to call and pray with Ellie each evening. The joy this brings her is huge! She loves to talk and she is tired of all of us by now, I’m sure. 

Here is the latest update that Ellie posted on her social media (Written by Ellie) ;

As it turns out the volume/rate of my TPN was way too much. It would be a healthy amount for someone who is over 6 ft tall and over 200 lbs which obviously I am not. Wednesday night I did not run TPN and the severe shortness of breath and difficulty breathing vanished.

When you are being overloaded with fluid, it can seep into surrounding tissue and my stomach was visibly and audibly full of it. I couldn't even sit or lay down because of how intense the symptoms were. I also was continuously vomiting up the fluid. My doctor just keeps taking calories out of the TPN and adding fluid. I do not have a calorie intolerance, but rather a volume/ rate intolerance. So even if you take away all of the calories, I still will not tolerate it. My doctor just could not wrap his mind around this. He said "I have had hundreds of patients on TPN who were much more compromised than you are and still tolerated it." What I certainly did not need was yet another doctor acting in a selfish and egotistical way. He thinks I'm just in distress because I'm not used to having nutrition. It's been 2 months on TPN, and most people see an improvement in symptoms within 2 weeks. He explained it like how they explain things to a psych patient, which I have experience with when I was accused of being "crazy." He said "I'm not saying the symptoms are in your head, I'm sure they are very real to you but they are not caused by the TPN." That's what they always say before writing a referral to psych or sending me away to inpatient eating disorder treatment. He genuinely thinks I should be able to eat normally and said if we lower the TPN I have to meet certain goals. The hospital sent me home on TPN I tolerated with more calories than what I am currently getting and I tolerated it well. But he kept tampering with it and adding fluids (when I was not dehydrated) and lessening the calories. So why would I need to eat if we lowered the fluids? Fluid does not have calories.

And in fact, my surgeon recommends his pre surgery patients on TPN not eat and if they do, it's just for taste and not for nutrition. When a doctor is so ego centered, they refuse to “take orders” from another doctor. Any recommendation the surgeon (who specializes in the condition that keeps me from eating) makes is taken as a grain of salt by other doctors. This doctor, who diagnoses patients with stomach migraines and acid reflux truly thinks his knowledge goes beyond what this other specialist sees on a daily basis. I can assure you if I were able to eat normally, I would not have agreed to surgery. Before I met with the surgeon, I thought he was going to not find anything wrong and refer me to psych because that is what has happened for years. So when he opened the scans and every nurse, PA, and student in the room gasped at the terrible condition of my intestines I was shocked. The issue is that doctors read the radiology reading and don’t look at the actual imaging. Of course they aren’t going to notice a condition so rare they don’t treat it at the hospital they work at. The surgeon was the first to ever look at the imaging himself. The tests I had done that determined I need surgery were actually read as normal by radiology. That is how easy it is to miss something so significant. So I haven’t ran TPN since Wednesday. I have been forcing myself to eat and it has not been easy by any means. We are trying to get switched over to a company that specializes in TPN. As much as I wish I could try and eat up until surgery, it’s just not a viable option. I am still running my IV protonix because it is in a 100 ml bag of fluid. The rate is so fast with it so it causes pain as well. I am also meeting with palliative care this week. Something that would keep my quality of life in line until surgery. I have allergic reactions to many things and get blisters on my skin. My doctor refuses to prescribe IV Benadryl so I am forced to take it orally every 6 hours. So hopefully that is something palliative care can work on. I don’t want to speak too soon on this but my sinus congestion has improved. Breathing through my mouth and struggling to breathe in general was a special type of torture. We are finally down to 66 days until surgery. 

Jesus continues to show me the way and get me through my toughest days. In a time when not much can be understood, He understands and He takes it and uses it for His glory

I am so proud of Ellie. How well she can verbalize how she’s feeling and most importantly for her faith in Jesus. The greatest gift you can give your kids is Jesus. 

Someone told  me today “I don’t understand how you can come to work and just seem to be ok with all you have going on at home with your daughter “ My response is simple. Jesus. For far too long , I tried to control the situation, fix the situation, became impatient with God and even angry with God. Slowly but surely , he brought me where I am today. I actually love going to work. My team and my students really make each day so bright. I got a chance to spend Friday night with my team, and to say we had a great time is an understatement. They are definitely a blessing that God brought to me when He knew I needed them most. What a gift! If you’re reading this, I love you girls!