Jadalyn is back at CHLA since last Tuesday (May 10th). For the past four weeks she has had a seizure, one a week, on Fridays at my Mom's house. Very strange. Then on Friday, May 6th, she had a seizure at my Aunt Mary's house. We had just left my Mom's house. I was beginning to wonder... is it something at Mom's. It was just so coincidental. We had visited CHLA/ER after the second seizure (the first one we weren't sure what it was and she had no reoccurrences that day so we did not bring her in, thinking it was reflux related). The ER at CHLA did a CT Scan and XRays and blood work and urine work ups but everything was fine, as far as they could tell and so we went home. They referred us to a Neurologist in Hollywood until we could get in at the Neurology office at CHLA. (They have an extensive waiting list!) I brought copies of Jadalyn's CT Scan radiology reports and the CT Scans on CD. He looked them over and Jadalyn and said to get an EEG and to videotape her if she had another seizure. Also, to bring her back in a few weeks. Then last Friday she had a seizure at Mary's and it lastest more than 4 minutes so we called 911 and the Paramedics came. When they arrived Jadalyn proceeded to start turning blue (after the seizure was over) and it looked like she was having a reflux/throwing up/turning blue event, so the paramedics decided to take her to West Hills Hospital. She and I got in the ambulance and went down there and Aunt Mary followed us in the car. They kept us there till 12am, did a CT Scan and were in contact with CHLA. They couldn't find anything abnormal from her previous CTs and they were unable to get her blood for testing. So they sent us home and we searched for hours that night for an all night pharmacy who sold the anti-seizure medication (to be given if she had a seizure / Diastat) We finally found one that had it but they couldn't access our pharmacy insurance. So we finally gave up and went home and got it the next day. Jadalyn was home and doing well and then Monday at about 4pm Lidia (Jadalyn's Nurse) called me at work and said that Jadalyn had thrown up a lot and it wasn't like her. So I rushed home and then she and I drove to CHLA. They did all the usual work ups and x-rays and everything looked okay so they sent us home late that night. Then the next morning we got a call that they thought she had "free air" in her abdominal cavity (the place where all your guts are located and where "air" should not be.) so they wanted us to come back and get further testing. So we had to go through the whole ER Triage process again and were in the ER room when she started turning blue. So they transferred us to their more equipped rooms and got the oxygen going and were trying to get an IV when she started to have a seizure. It just went on and on. Not too strong and then stronger and then going back to small shaking. While they tried to get an IV. She did not cry and try to get away and this scared me more than anything. I really felt like something was wrong. But they said she was unresponsive due to the seizure activity. Horrible... They finally gave her ativan (one dose R and then when they got the IV going again because the first did not work) and the seizure stopped. Thank God! She was super sleepy and slept for the next 6-8 hours. They got her blood and sent everything to the lab. They did a CT Scan of her abdomen and her head. They found that there was no "free air". What they did find in her blood work was that her sodium was very low (around 122 and it should be 135 to 140) and
they said that this could cause seizures. So they started and IV and have been giving her Sodium for the past several days. Her Sodium levels are back to normal and she has had no Seizures since Tuesday but she had to have normal Sodium levels for several days before she could be released from the hospital. They also have revised her amount of free water we give her in her J Tube and when we can give it to her. Which is now separate from the time we give her formula. So some changes there. All medications remain the same. phew!!! So they decided on Friday to reschedule her Nissen Fundoplication surgery for next week. We will know more details on Monday. That is the surgery where they take part of her stomach (fundus) and wrap it around the esophagus so that no food/stomach fluids can travel back up her esophagus from her stomach. Therefore relieving her Reflux/Turning Blue episodes. She will also go back to being fed in her stomach instead of her Jejunum (which is in the intestines). They will do the surgery Laproscopically (with 3-5 small incisions instead of one large one which is considered "Open") and as long as they are successful they can do the surgery this way. Otherwise they will have to do an Open Nissen. So pray, pray, pray for that. So life has been crazy lately (to say the least) between going between CHLA, School/Nursing Home and Work. I am sorry to all if I have not been my efficient self and if I have forgotten things or not returned phone calls and done what I'm supposed to in a timely manner. I've just been so worried and busy and in a funk and daze. Thank you for your understanding during this time. My Labor Assistant workshop is this coming weekend (finally) and I look forward to being done with that and just doing Jadalyn Stuff, Work Stuff and School Stuff. School is challenging but rewarding. I am learning so much!!!! Just wish it wasn't such a crazy time. I am still looking for 4-6 women who are 30+ weeks pregnant by next Weekend for my seminar and I just do not have the time to put flyers up, so if ANYONE knows of someone who could spend about 2 1/2 hours next Saturday at our workshop (and fits the bill) please, please, please, pass them my way. This is my final workshop duty, besides setting up on Friday and attending the workshop myself. Thank you all for your love and support. We love you!
P.S. Jadalyn is stable now and back to being her happy self. She is just waiting at the hospital for her surgery next week sometime. She will be home a few days after that.
Love and Hugs,
Jadalyn, Liz and George
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