February 26th, 2017 (1748)

It has been a challenging day for Arlyn and although many things have gone well she struggled a bit more than previously. This afternoon after review of her EEG (which monitors for seizures) they found she was having some and treated her with Phenobarbital. She was consulted by neurology and they will decide tomorrow with the attending what seizure medication to treat her with regularly but for now the phenobarbital should help. Arlyn will continue to wear the wires to measure her brain waves to see if she has any further seizure activity. The medication did sedate her quite a bit and after her pressure has been dipping down throughout the morning they intermittently have paused the fentenyl. She received her blood this morning and Lasix (which helps get the water off) and has had a great result with diapers that were weighing 12-20 her initial diaper post lasix was 96. She is also putting out more from her chest tube. This evening her lab work showed a very low calcium level and Dr. Baker needed to push calcium at the bedside. The medical team also checked an albumin level and it was low so she will received albumin which should also help her blood pressure but may again make her calcium low. TPN should start at 1800 and lipids with it so her nutrition should improve and they are checking now to see if they can increase the calcium in her TPN.

I love this little girl so much and it has been an extremely emotional day today. Grandma and Grandpa Burley came to visit Arlyn and My Aunt Susan stopped by. Mommy and Daddy are enjoying every single second that we have and have barely left the bedside today. Keep the prayer chain going, so thankful for each and every one of you.

"Lord I come to you today to present Arlyn to you. This very life threatening illness that is upon her is very sad to all who know and love her.  I know that in times like this her Mommy and Daddy are in despair. Please keep us strong in You so that we can be a comfort to this dear little child. Please keep Arlyn from being scared of what is happening all around her. I ask Your mercy so that pain would be minimal or nonexistence. I love this small and fragile little child. Bestow Your grace and peace to us and all who love her. I pray this in Jesus name, Amen.”