Wow just realized how long it has been since I did an Arin update. Here she is on Halloween, she did not Trick or Treat as it was to cold for her so she stayed home with Grandma and Grandpa and handed out candy. Since our last post in Feb. so much has happened. She turned 1 on March 21 and had a great party with all her friends and supporters. Then on April 16th. she officially joined the seizure club with a status seizure that lasted 2 and 1/2hours which ended with her intubated and in the PICU she then came down with a Staph infection in both her lungs and her blood. She was a very sick little girl and was intubated for 4 days and in the PICU for 7. Then another week on the regular floor. She ended up coming home with a PICC line and IV antibiotics. On May 10th she had the surgery to untether her spinal cord and found that it caused a neurogenic bladder and are now doing the tests to see if she needs to go on a catherization program as she cannot always pee and then has a lot of pain which can lead to other issues. After that they upped her Keppra and added Trilyptal and seemed to be good on that until July 10 when her grandmother was returning to Nebraska she decided to have a small cluster of seizures so after a trip to the ER and a med increase we were sent home. She did really good on the trip to the National Conference in Indianapolis and back and then during a visit from my brother, 2 nephews and her great grandmother on Sept 1. she decided that the house was to hectic for her and again went into status. This time it was about 1 and 1/2 hours long and ended up intubated and in PICU for 3 days and then a couple days on the regular floor. By now we have a port for vascular access as our IV team said that since they even have a hard time getting a vein on her she needed it. They upped her meds again and since then we have been great. At our follow up with neuro we asked about B6 as she had the Keppra whine and he prescribed it for her and wow what a difference that has made. She is happier and not sure if it is the B6 or not but since then she has started to try to sit up on her own and if in the right position can pull herself into a sitting position. Then it was time for a nephrology checkup and after her labs were done they found that she is dumping a ton of protein in her urine and had low sodium levels due to the seizure meds so he put her on enapril for the protein and sodium chloride to increase that level since low sodium can send her into seizures. She is about to have surgery on Nov 16th to seperate her conjoined fingers on her right hand and possibly put in a suprapubic catherter port. She will be in and out the next day as long as she behaves herself and does no funny business. Her hand will be in a cast for 4-6 weeks but she should be fine. She is currently 18lbs 9oz and 26 1/2inches long.
The following pictures are of her last night at our church Fall Festival with her face painted and with her new buddy Captain Jack and again in her costume.
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Wow! You’ve been so busy. The only good thing about all these episodes is that our little ones won’t remember how tough things were when they were babies. Nathaniel just had an emergency g-tube placement this past Wednesday. Your little monkey will be fine just like mine will. They are strong angels.
Oh my. I had no idea how busy you and she have been. I’m sorry to hear about all the seizures. But she sure makes a cute monkey.
Dear all, WOW… can’t believe all that you’ve gone through. Know that she is in God’s hands. Hope the surgery went well. Love to all, Jolene