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Sunday, April 2, 2017

A Quick Update on Madi and a Prayer Request for Deena

For those of you who are our friends on Facebook, you may have seen that Madi was in the hospital this weekend.  On Friday she woke up seizing, but it wasn't a typical series of seizures for her.  After maxing her out on her rescue med, I called 911 and asked to be taken to the hospital.  She was awake the whole time, but I think she was hallucinating because she kept talking about seeing Sponge Bob and skeletons; two things she never talks about or watches on TV.  At the hospital she had another seizure are required IV meds to stop it.  After that she finally fell asleep and I knew that the worst had passed.  We had to change rooms because they were understaffed and were moving everyone over to the adult ED section, but she slept through all of that, thankfully.

While we were at the hospital they ran tests to try and see why she had a seizure.  Her shunt series came back just fine, her urine looked great, but they came back and said her blood work looked terrible.  Her white and red counts, as well as her platelets, were very low.  They told me they needed to transfer me to another hospital so that she could see a hematologist and prepared me for the fact that she might need a platelet transplant.

They let me transfer with her, so I was very thankful for that.  This is the first ambulance ride she remembers, and she was pretty excited, but also nervous and wanted me to hold her hand the whole time.  I'm thankful I was able to be there to do that for her.  

At the next hospital the brought us directly to the PICU.  We were put in a room with a nurse that already new Madi, and she was really sweet with her.  You could see in her eyes, though, that she was worried for her and what news might be headed our way.  They sent the hematologist to talk to me.  She started using words like "leukemia" and "cancer" and we were starting to get worried.  They wanted to re-run her tests to get a baseline there.  Thankfully they were able to use the ultrasound machine to find a vein in her leg, so the blood draw didn't bother her at all.  Normally it is very traumatic and upsetting for her.  

After a long day of waiting, they got her blood test results back.  Everything looked perfect.  Not one thing was low.  They transferred us to the hematologist unit and out of the PICU and the doctor came to talk with us again.  They basically said that they couldn't believe the blood work was from the same child.  The doctor did say she has seen this happen one other time, where things went from looking terrible to looking just fine.  She said she wasn't sure what happened, but we were all so relieved.  God is watching out for our sweet girl for sure.  We stayed overnight for monitoring but were discharged the next morning.

It was a crazy and stressful whirlwind, but we are so glad to be home as a family again.  Madi is back to her normal, spunky self, and we couldn't be more thankful!



Next up... Deena!  Sweet Deena has dental surgery tomorrow.  She's needed it for months but this is the first opening her dentist had available and we are thankful the time has come.  She came home from India with some rotten teeth, lots of cavities, and a special little mouth that's missing most of her adult teeth.  In addition to having OI (osteogenesis imperfecta), she also had DI ( Dentinogenesis Imperfecta).  Tomorrow they will pull some of the teeth that are beyond saving, repair those that can be repaired, and cap those that can be saved with a cap.  The surgery should last about 1 1/2 hours and should be outpatient if all goes as planned.  The long term plan is to keep her teeth as healthy as possible, going to partial dentures when needed.  Please be praying for a safe surgery and fast recovery.

Thank you!!







     

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