Scary day

Yesterday we had a meeting with our therapy coordinator. She came over for me to fill out all of the paperwork and get input on what we would like for Teryn. I was sitting on the floor next to Teryn as she was taking a nap. As is my habit, I was constantly looking at her to make sure she was okay. I happened to look down at her and noticed that her lips were turning blue so I rubbed her chest which is usually enough stimulation to get her breathing again. She was not responding at all so I picked her up and my mom brought me the suction machine in case she was having trouble with thick secretions in her throat. I tried suctioning and did not get anything. I began giving her vigorous stimulation for about 30 seconds (which felt like 30 minutes). In the back of my mind I was thinking we were going to have to call 911. Finally she became responsive and started breathing again. Shortly after she fell asleep and took a 5 hour nap. It was extremely scary for my mom and me both. I was thinking that maybe she had let her tongue fall back and could not move it forward. In hindsight I realized maybe I should have checked her tongue.

James came home and I let him know about our scary afternoon. We had dinner and Teryn woke just as we were finishing up. We decided to go ahead and give her a bath and get her nightly meds ready. She was sitting very happy and alert with me on the couch while daddy was cleaning up. We got her undressed while she kicked and cooed and then took her to the tub. Within a minute of putting her in the tub I noticed she got very still. I turned her face toward me and noticed she was turning blue again. We immediately took her out and began giving vigorous stimulation again. I remembered my thoughts about her tongue from earlier in the day and tried to check her tongue but her jaw was clenched down tight. I then realized she was probably having a seizure. After about 30-45 seconds again this time, she began breathing and becoming more responsive. We decided to give up the bath and call the pediatrician. I spoke with the nurse and she agreed it was probably seizure activity. Teryn was due for her anti-seizure meds in 15 minutes so the nurse said to go ahead and give it to her and that more than likely she would be okay the rest of the night, if we saw anything else suspicious then to call EMS or go to the hospital.
Well needless to say it was a very sleepless night for me. Every time I fell asleep I would immediately wake and stare at her breathing patterns to make sure she was okay. Interestingly, her apnea monitor did not go off yesterday during her first episode. I think maybe I caught her before the 20 second delay on the monitor and then it picked up my moving her as breathing. The second time she was in the bath and disconnected from the monitor. So, I was not putting my trust in the monitor at all last night. I used the mommy monitor.
This morning I called the peds office as soon as it opened and they asked us to come in so the doctor could do a follow up and check her out. He said she was looking great. She is now 12 pounds 7 ounces. That is up a pound and a half in about a week and a half so we were thinking maybe her weight gain has caused the blood level of her meds to go down. He wrote us a prescription for an emergency suppository(very expensive) if she has a seizure lasting more than a minute and sent us to the hospital to have blood work done. He also said to feel free to call 911 if she has this type of seizure again just in case it lasts longer. Unfortunately now we know what her seizures look like.
The tech at the hospital was having a hard time finding a vein to get blood since all of her veins were used up from IVs. She sent us upstairs to the pediatrics unit and they were able to get what they needed after a loooong time. They ended up having to use a finger prick instead of a vein.
The pediatrician called me this afternoon and her anti-seizure meds were still technically in the therapeutic range but had room to increase. We will begin with an increased dosage tonight. We should have a completed referral to a neurologist soon. Of course, there are no ped neurologists here in town so we will have to travel, but oh well.
We are home and resting now. Please continue to pray for our Sweet T that issues will be resolved and she can overcome these types of episodes.