Annie’s Story

Site created on October 30, 2021

Welcome to Annie’s CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement while we heal our sweet Annie.

For more information on how to help Children’s Medical Center Dallas the the nephrology floor, please reach out to me Rae.a.hagen@gmail.com or 817-223-2535.

We have worked closely with Child Life and the Social Workers for the Renal (nephrology) floor for opportunities for giving back.

Annie was diagnosed with Hemolytic Uremic Syndrome (HUS) on October 25 after nearly a week of stomach pains and illness. It was determined her HUS was caused from E. Coli strain O157:H7 directly linked to ground beef.

Annie has endured many hemodialysis sessions, 3 blood transfusions, 3 seizures, more tests than we can count, needles, an NG tube, and many other things a 3 year old should never experience.

We have been in excellent care at Children’s Medical Center Dallas on the ICU and Renal floor. We continue to monitor and patiently wait for recovery from this horrific disease.

We thank everybody for your support and love the past few weeks! We know we still have a long road to recovery, but our current goal is become strong and stable enough to leave the hospital.

Newest Update

Journal entry by Rae Hagen

It’s been one year since my last update on this site which, for the most part, means Annie’s doing great!

Last August, Annie had made such great and expected progress that we moved to only needing 6 month checkups. We had one in February and one yesterday:


February 2023
At our checkup in February of this year we had a bit of a scare and a reality check. Matt was on a business trip so I took Annie alone for the checkup. Since August had gone so well I was more concerned about the Dallas rush hour traffic than I was about the visit. 

The usual process for the checkup is to get a urine and blood sample as soon as we arrive so the doctors can review while we are there. Annie had been great at giving blood at the previous checkups, but I think it had been a while and she forgot how easy it actually was. She was pretty emotional and wasn’t very cooperative, but they took the blood and we continued to the room. 

Everything initially appeared great and we were just waiting on the blood results. As soon as they came in it was a bit of chaos between the Attending and Fellow doctors. They rushed into the room and said we need you guys to RUN across the hospital and get another blood sample. 🏃🏼‍♀️

Back story here is that we’re always the last visit in the Nephrology clinic for the day (I have no idea why) and we are always the last patient for the phlebotomist. Once the phlebotomist leaves, the only place for us to get blood drawn is at another building on the complete opposite side of campus. I’m not joking when I say it’s about a mile from the 5th floor Nephrology, through the Bright Building, through the two garages, across another street, and into the other building. 

 So when her blood results came back showing extremely dangerous levels of potassium and a few other really bad markers, they needed us to get another set of blood testing. Our doctor made a quick phone call and said “You need to run over there and get the blood drawn. Hopefully I will have the results of the second blood test by the time you’re home, but if I don’t we need you to pack a bag and come back to get omitted because her potassium is lethally high.”

Well that’s one way to give me a panic attack. But I needed to stay calm and get her over there. I did feel like it was a scene from Grey’s Anatomy from the second we started making our way to the other building. I put Annie on my back, I had her backpack on my chest, and I’m certain I broke my own mile pace record getting over there. Not to mention, people could tell I was heading somewhere and all the staff were telling me which direction to go and then would say “when you make that turn or get off that elevator ask the next person you see where to go next.”

We made our way to get the blood. She was SO good during that draw and then we rushed to the car to get home to pack the bag. 

The drive home was a blur because I had every memory pop back into my head from our hospital stay. The worst part is that Matt was on a flight during all of this so I couldn’t even call him. 

We got home and as soon as we walked in the doctor called and said the results looked better and we don’t need to be omitted but they didn’t look how they wanted them. So we spent the next few days going to get blood work done and everything did get back to a reasonable level. Phew! 


August 2023
We have spent the last few weeks talking to Annie about her upcoming doctors visit and really trying to let her know how important it is to be calm and not get worked up when they take her blood. And Matt and I thought it was best that we both attended this appointment because we had some other things we had questions/concerns about and it always helps to have two people helping with the blood. 

They took the urine sample like normal but we had to wait for the phlebotomist. The doctor came in and said that her urine looked really really good. One thing that is super important is that she clears the protein in her urine to prevent long term kidney issues. This urine sample we received the “negative” amounts of protein indicator which means it’s decreased so much it’s not traceable. However, the bigger marker is the protein/creatinine ratio which we have to wait to see after her blood work comes back. 

The phlebotomist comes in and Annie is a rockstar! She did such a good job (maybe because I bribed her with candy…) 😜. The doctor then sends us home and says “I’ll call you tomorrow with the results.”

We were very excited when we heard the urine results so we had a great car ride home and jumped right into our evening activities. Matt went golfing and I took Annie to cheer. As soon as we walked into cheer, my phone rings and it says “Nephrology” which I know means our doctor was calling. In a matter of 10 seconds I had every horrible thought go through my head because he said “I’ll call you tomorrow”. So when I’m getting a call just 45 minutes after we left the hospital, I quickly jumped to the conclusion that her results came back bad. 

Well… they didn’t. They looked great. No real changes from her last blood work and that he doesn’t need to see Annie for another 6 months!! (The number of times I’ve nearly had a heart attack from these checkup visits might be in the hundreds at this point).

So what does “great” blood work really mean?

  • Her protein/creatinine ratio has improved and this is huge because it reduces her risk of long term kidney issues. 
  • her eGFR is now at 76.9 which is about where it was at last time. 
    • This is the number they use to estimate the kidney function. 
    • Most normal people will be anywhere from 90-120.
    • But we don’t know what her baseline was before she got sick, so her normal could be 90 or 120. 
    • Which means her kidney function is somewhere between 65% - 85%.
  • Her potassium and other similar results are normal which is great news!


While she still has Stage 2 Chronic Kidney Disease, we have a lot of hope for her prognosis and long term kidney future. 

🩷

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