Lilah’s Story

Site created on August 9, 2020


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Welcome to Lilah’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.

Lilah’s story began with her getting a campylobacter intestinal infection at the end of July. Since she was visiting grandma at the time, she took her into the hospital. There they diagnosed her and sent her home with antibiotics. After a few day, she was not getting better. Grandma had planned to take Lilah to the lake in MN, where I would pick her up. Instead, since she was not getting better, I met grandma in Fargo and drove her straight to Bismarck ER. We thought she was dehydrated and maybe needed a different antibiotic. The Bismarck ER admitted her and pushed fluids and gave IV antibiotics. After three days, she wasn’t getting better. The Dr did some blood draws and discovered she had Hemolytic Uremic Syndrome (HUS).

Within hours if her diagnosis, she was flown to Fargo. There they had a pediatric nephrologist. In Fargo, she seemed to be getting a little better, but was still unable to keep food down and had a lot of diarrhea. The nephrologist there told us she may need to do dialysis, since her kidneys were damaged by HUS. As the days passed and she wasn’t improving, the dr was consulting with other pediatric nephrologists in Sioux Falls. It was decided to send her to Sioux Falls before her conditioned worsened as Fargo did not have their pediatric dialysis unit up and running, since it was just put in.

Lilah was then flown to Sioux Falls, SD. As soon as she got there, they decided they wanted to put in a dialysis catheter and PICC line. This needed to be done under anesthesia . She did great! Later that same night, they ran her first run of dialysis. They start out slow and it seemed to go well. Dialysis needed to be done since her kidneys were not working and fluid was building up and she was not voiding. That was putting pressure on her lungs and also making it hard to breath. The next two days, she had three more dialysis runs. On the last run, she ran into the same complications as the previous run, she started to get a headache. It went away with some Tylenol. They continued the run, but she suddenly had a seizure. The dr was in the room when it happened. Dialysis was immediately stopped and medication was given to stop the seizure. She was given another med to help slightly sedate her. They then took her for an MRI to see if the seizure was caused by a brain bleed. She was intubated for the scan. Unfortunately there was a bleed. She had a right frontal lobe bleed. We were devastated. She was then taken immediately for surgery to remove the clot by a pediatric neurosurgeon. The surgery took about an hour. Lilah did really well during the surgery and it went as well as it could have.

After surgery, it was touch and go for Lilah. She really had to fight for her life. We almost lost her several times. There was a team of drs, nurses and other specialists in the room the entire night. They were fighting the pressure in her brain caused by the bleed while also trying to get her sodium, potassium, etc levels back to acceptable ranges and keep her blood pressure down. She required so many bags of blood and her surgery site was still leaking because her platelet levels were low. They put her in a coma. She also needed to be switched onto a different ventilator twice, trying to find one that kept her respirations aggressive enough. The nephrologist started continuous dialysis (CRT). It took a lot of adjusting to get her body used to it, but they were able to start getting excess fluid off, because they had to inject so much to get all her functions back to ok ranges. Now we are taking her progress day by day.

Newest Update

July 12, 2022

Journal entry by Brenda Newton —

I’ve been meaning to post since we got back from the Cities, but life just keeps chugging on. We’ve been back for a week and a half now. Lilah’s therapist tested her at the end of the program and she made some significant gains. We are so proud of her! I only wish we could go on a little longer to see more gains, but the program is only 4 weeks and they need to make way for more kiddos this summer. It was also quite an upheaval of our lives and it felt really good to be home. However, we are scheduled to come back again next summer. The constraint program really helped Lilah make big gains on muscles strengthening that is needed to make finer motor movements in her left arm and wrist. She gained more control of her arm and is able to rotate her wrist more. All of which are needed precursors to finer tuned movements. She has also gained some better pincer grasp movements, making it easier to pick up and remain holding objects. Our goals now are to sustain the gains she’s made and build upon them. It is really easy for Lilah to go back to ignoring her lefty, so we are cuing her often to use it as a helper in all of her activities. She understands this and is very good about correcting what she is doing when we tell her. 

When we got home from the program, we drove straight to a campground near our home and spend a few days unwinding. We had planned to stay until Monday, but were so eager to get home we left on Sunday. We went into Bismarck on the 4th and enjoyed our tradition of getting DQ ice cream and watching the fireworks display that the Capitol puts on. 

Lilah will be going to therapy three times a week during the summer to keep up the momentum of her hard work. She also had a routine eye appointment last week. Her prescription was bumped up a little, which is expected in growing kids with glasses. The good news is her eye turn has reduced by 50 percent. It wasn’t noticeable to me before, so now she doing even better! Lilah has a few more appointments coming up in the next 2 months that will bring us back to the Cities a few more times. She has a OT recheck, PT recheck, rehab Dr recheck and Neuropsychology recheck.  She’s a busy girl and keeps us on our toes!


Read More of the journal titled "July 12, 2022"
  • Dilated eyes while at her eye appointment last week. 
    Dilated eyes while at her eye appointment last week.
  • The OT showed mom how to get the cast on and off if we or her home therapists want to do mini constraint sessions with Lilah. 
    The OT showed mom how to get the cast on and off if we or her ...
  • On her last day of casting, Lilah let her OT choose the design. A flag for the 4th. 
    On her last day of casting, Lilah let her OT choose the design. ...
  • Watching Lilah do exercises through the observation window. It’s a one way mirror so Lilah didn’t know if we were watching or not. However she learned quickly about what time we came and could make a pretty good guess. 
    Watching Lilah do exercises through the observation window. ...
  • Lilah choose polka dots one day during her last week. We were impressed at the fun designs they came up with. 
    Lilah choose polka dots one day during her last week. We were ...
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