Two days later on December 10th the world came crashing around us when we heard Leighton was diagnosed with Hemolytic Uremic Syndrome or HUS for short. A disease that destroys red blood cells, and is the most common cause of sudden, short-term-acute-kidney failure in children. Most children who get HUS work through the disease within 1-2 weeks tops with no long term effects on their health, but with the strain of e-coil that caused Leighton's HUS she had a very severe case. From day 1 they anticipated she would need dialysis, a vent and some "system support" which all came to be true by the following afternoon when she started plasma exchange as well as dialysis. The night before she started on dialysis was a night I will never forget, she was in so much pain, she could hardly move, she whined and complained and was going in and out of consciousness, moments where she wouldn't answer us, she'd look past us and we felt like we were losing her. That all changed when she started dialysis.
We had an amazing Pediatric Nephrologist, Dr. Stuart who was the only one in Wichita leading the team in her care. While at Wesley Medical Center in the PICU Leighton had 2 obvious seizures which as a parent of a very healthy child is the most terrifying thing I've ever experienced. She also completed 4 rounds of Plasma exchange and was on constant dialysis or CRRT (continuous renal replacement therapy) to rid her body of the toxins that were released into her blood stream from HUS.
At Wesley her #'s would be better one day then back down the next, she was progressing slower then the nephrologist anticipated and Dr. Stuart's rounds at Wesley were about to end, so she put in for Leighton to be transferred via plane to Children's Mercy in Kansas City.
Wednesday, December 18th we prepared her for the fight, I would fly with her and Kevin would drive up to KC and meet us there. I was terrified she would have a seizure or blood pressure issues in the plane, so did the medical staff which decided to try 2 medications together that had a adverse reaction to Leighton, her blood pressure was VERY unstable and needed norepinephrine to help control it for almost the entire day. Come to find out that the amount she was on was much more then most people get. But not knowing that the flight went well, very uneventful, had I known that she was being controlled by such strong medication I wouldn't have been so calm.
We arrived at Children's Mercy around 8 that night and when we finally got to go in and see her after they finished the admission process I found out she had bitten her tongue and blood was in her mouth and in her tubes. It was so sad to see. They did one more round of Plasma exchange the following morning and decided she would not require anymore, it was not helping her improve like they expected. Her new team of Nephrologist started talking to us about a much more controversial investigational medication called Eculizumab, which could do wonders or nothing. They really didn't know but there were some scary side effects also. We decided at the moment to wait and see how the next couple days would go.
Late Saturday December 22nd after going down on her dose of sedation she started to wake up which was great but we had noticed she no longer looked at us and wasn't connecting. This concerned the dr's and the following day after lots of test we heard something you never expect to hear. Leighton had suffered a series of little strokes in her basal ganglia. This destroyed us, up to this point we just assumed the second her body was healthy we would leave and life would be the same, we now realized our worst fears...would she ever return to the spunky, twirling 2 year old we knew? No one knew and no one could tell us exactly how much her neurological function would be effected and to expect 6-12 months before we really know what Leighton will be capable of. How do you do that, you watch old videos and look at pictures of your child and cant imagine her not being who you knew her to be. Will see ever be able to eat normally again, walk, sit, talk understand anything? Could she feel love? Was she happy? How do we deal with this?
By Tuesday, Christmas Eve we decided there was nothing else to lose and took at leap of faith with the Eculizumab drug. Today Friday, December 27th almost exactly 3 weeks after this life changing event began Leighton is no longer on a Ventilator, her #'s are all in the normal range or trending to their normal ranges, she has moved both arms and legs, tired to sit up and is coughing on her own. It's the little things we are happy to see, She is currently in the process of coming off all the medications she has been on as well as putting a PD catheter in her belly until her kidney's start to work on their own doing this will enable her to start rehab soon.
The new plan of action is at the start of next week we will be working with Neurology, Rehabilitation, Physical, Occupational & Speech Therapist to get our little girl back. They still anticipate months before we really will know what she is capable off but we are just happy to see her beautiful blue eyes focusing on ours again.
We have had so much love and support from family and friends but also from people we have never and probably will never meet. This has changed the way we look at life, how we will raise our children and our exceptions in life. All we want now is to take our little girl home. Thank you, we appreciate all of you more then you will ever know.
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