Another Update from Iowa City

Well, we are still here and it looks like we will be for awhile. Just as I thought Alayna took a turn for the better last night, she decided differently. This morning around 7:30 am, during her albuterol treatment, she began to look "funny" to me. Her pupils got really large and she started to shake in her arms. At first, we thought that it may be a reaction to the albuterol. However, about an hour or so later, she had another incident that lasted about 5 minutes and was definitely classified as a seizure. Alayna had never done this at home before. She came out of it after about 5 minutes and I watched over her closely. About 1/2 hour later, I saw signs of another seizure coming on. Her eyes roll about half way to the back of her head, her arms lock, she stares straight ahead, and shakes. Her nurse gave her a shot of Ativan and she came out of it after about 11 minutes. It was longer than the previous one, but I'd say not as severe. It is so reassuring to have such great nurses and doctors tending to Alayna. They were all in there and are very attentive to her needs.

It was decided by the neurologist to administer phenobarbital through her IV to help control the seizures. It is unsure as to why she has all of a sudden started this. Children with 1p36 are known to have seizures, but maybe it is all due to having this RSV and being so sick. It has also been decided to prescribe her a 6 month dosage of phenobarbital. She will take it two times a day and if she is seizure free in 6 months she can go off of it to prove to us that she doesn't need it anymore. I hope we can find the right dosage amount for Alayna that will make her seizure free and also get the most out of her therapy. The drug is sometimes known to cause kids to be tired or a bit lethargic.

She has been resting extremely well since noon today. The phenobarbital was administered in a pretty large dose and it has knocked her out. That is kind of good since she still hasn't eaten anything since Friday at 9pm. The doctors are discussing possibly putting an NG tube through her nose and into her stomach and feeding her that way. She wouldn't aspirate that way and it would keep her GI tract up and running.

Alayna will eventually have an EEG and a swallow study test. Just not today after all of the activity. She may also have another chest x-ray. I'll keep you informed.

Again, thank you for everyone's prayers for our little angel. She continues to be so sweet through all of this. She is a pretty sick little girl right now, but I know she is in good hands here at Iowa City. I never realized how serious RSV is. Parents out there, be aware of this and make yourself aware of the symptoms. I can honestly say that I wasn't worried about it this winter. I was more worried for her last winter as a newborn. That is false thinking on my part. I didn't share this with you before, but Alayna is the first RSV case for the local Pediatric Group this season.

Well, I better get back to Alayna. She loves for me to sing "Jesus Love Me" and "Jesus Loves the Little Children" to her. And Drake and Lexi came to see us too. I miss them and Douglas too. Say a little prayer for little Miss Alayna tonight. Thanks.