Grandma’s email to family July 10th

Hello All,
I am sitting in the Primary Children's Hospital in room 4320, again, and thought I would update you and ask for your prayers in behalf of Adi. On Sunday, Scott and Anna brought Adi over to our house and described some gagging and retchingepisodes that Adi had been having on Saturday and Sunday. Often times with these episodes Adi would stop breathing and get a glazed-over look in her eyes. When I saw one of these episodes I agreed that it was time to take her to the hospital. It made her start sweating so much and just wiped her out. It didn't seem right. We talked to the ER staff about identifying through an x-ray whether something was amiss with her feeding tube which might be causing this attempt to vomit. Because of Adi's previous surgery for her hiatal hernia and the nissen wrap she is unable to vomit. Well, we were taken back to x-ray very quickly which was wonderful because the waiting room was packed. Of course the results of the x-ray showed that the feeding tube was in the correct place and wasn't the cause of this new behavior. Luckily, while we were in the ER she had a little episode when the attending physician was examining her. He said he was concerned and felt that she should be admitted and have some tests run to determine if she was having seizures. So, Monday, Tuesday, and Wednesday were spent doing tests: EEG, echocardiogram, and a GI emptying test. Everything came back normal. When she was admitted they had Anna stop nursing her so she was only getting feedings through her NJ tube. She didn't have any more gagging, retching episodes so the feeling was that maybe the milk from nursing was sitting in her esophagus too long and causing her body to try to up-chuck it. Anna was finally able to meet with the surgeon, Dr. Rollins and talk about Adi's upcoming repair surgery. Of course we kept hoping that all of this would be cause to schedule the surgery sooner. Not so. In fact, because Adi had been in the hospital the week before and had been diagnosed with Adenoe Virus, Dr. Rollins wanted another 'snot test" done to see if the virus was still present. Normally they would not put a child under anesthesia until 4-6 weeks after having that virus. Discouraging news -- the surgery might even be postponed.
Since all the tests had been run and Adi was doing okay, no more retching, Anna and Adi were discharged yesterday around 4:30. Adi slept on the ride home and Anna drove straight to see Scott at work. Scott looked in on Adi sitting in her car seat and saw that she was still sleeping. He went inside to finish up something and Anna was sitting in the car waiting for Scott to come back. She happened to look back and saw her car seat shaking. She came around to see her and saw her lips turning bluish, face very pale, eyes were glazed, and body having some convulsions. She screamed for Scott. He came and got her out of her car seat. She wasn't breathing and so he pulled out the NJ tube so she could have as much room as possible in her airway. Anna called 911 and while they were on the way Adi started breathing a little more and gradually got back to full breaths. By the time the paramedics saw her, she was smiling and interacting with them as if nothing happened. Scott and Anna decided it was best for Adi to ride up in the ambulance just in case something happened. She of course was fine on the way up and they got them right into an ER room and within 15 minutes she had another episode while the resident was in the room and she was able to see what happened and immediately thought it was a seizure.
Adi had 4 seizures last night. They decided to give her some Ativan to control the seizures and let her sleep. I went to the ER room and got it on what was happening after 9:30. Adi was admitted and put in room #4320 (the same room she had left at 4:30 in the afternoon) around 2:00. I went to go sleep in my car - sleep is not an accurate word. Anna and Scott slept in Adi's room. Again sleep is not an accurate word. The pull out chair butted up to the rocking chair with their heads at opposite ends and their legs fighting to share space - I guess there could have been some sleep.
This morning I came back to the room around 7:00. Adi had a very significant seizure at 8:30. The resident neurologist was right outside the door and was able to see the seizure. A technician arrived at 10:30 to set up an EEG. We wanted Adi to have a seizure during the EEG since the EEG they did on Monday came back normal. Originally Adi was scheduled for a routine EEG which would only last about 30 minutes, but the technician needed to go make a presentation and said that she would leave it on until the presentation was over -- about 2 hours. Well, even before the technician had finished letting us know what to document if she had a seizure, one started. Scott was able to get it on video as well. The seizure might have been the worst one she has had. What an answer to prayer to have the information documented that this team of neurologists needs to make a good diagnosis.
It is now 12:30 and we haven't seen anymore seizure activity. I would just like all of you to keep Adi, Scott and Anna in your prayers. This has been very scary for Anna and Scott. I hope that they will feel comforted and be able to get the rest they need and be in good health as they deal with what lays ahead for Adi, which right now is uncertain. We still need to resolve the upcoming surgery date and what effect these seizures will have on that.
Love,Valerie