This is the baby whose smile I'm missing. It was taken in mid-July, a couple of weeks before Josiah was admitted in the CCCU.
Today was a little disappointing. Before I arrived at the hospital this morning Josiah was agitated and desatting. The nurse eventually sedated him and his sats increased. However, Josiah also ended up sleeping most of the day. On the one hand it's nice to see him calm but it's much nicer to see his eyes open and to be able to interact with him.
On rounds the doctors asked for an abdominal ultrasound and an echocardiogram. On the weekend Josiah was started on antifungal medication just in case this could be the reason for his fevers. The abdominal ultrasound today was searching for evidence of any fungal matter. If none is found, I believe the medication will be stopped. I haven't heard the results of the ultrasound. The echocardiogram will happen tomorrow.
The staff physician also wanted Josiah to start on clontidine. I asked to speak with the fellow before the medication was given. The fellow explained that some recent studies show this drug decreases the amount of rise in adrenalin when one is agitated. It also acts as a sedative. I believe they hope that Josiah will be less agitated on this medication which would mean he wouldn't clamp down which is currently causing the blood to go to his body and not to his lungs and hence the desats. However, I'm not thrilled about a new sedative. We'll see how he does on this drug over the next few days.
The staff physician suggested we have a family meeting this week. He's aiming for Thursday. I think this means that the staff physician, surgeon, and cardiologist will sit down with me and tell me the plan. I think they are still planning a catheterization for Josiah but perhaps I'll hear tomorrow about a date.
This is a photo of my wonderful big boy. We continually thank God for Isaac's flexibility and how he is weathering this storm. He loves to play and he loves his grandparents and he knows that God loves him.
My highlights today were lunch with a friend and giving Josiah a sponge bath.
Thank you for your love and prayers!
Blessings,
Elizabeth
Hi Elizabeth & Graham,
ReplyDeleteHave been trying to read your blogs since Graham's mom told us at Coffee Break about it. You are definitely on a path you never expected to be on. It is a blessing to all of us to see how stongly you are trusting in God and allowing yourselves to be lead down this path. Sending my love and prayers to your family. May Isaac continue to be resilient and know how much he is loved loved by all of you. Praise God for your wonderful parents and family who are doing what God has called them to do to help at this time. He truly is a wonderful God. May He put his healing hand upon Josiah to help him have a good day. What a blessing you are to all of us Elizabeth in your strength and faith. On the days you aren't feeling strong lean on all of us. Thanks for blogging.
Linda Koepke(I know your mom as Aunt Betty)
Dear Elizabeth, we think of and pray for you many times a day. I have your pictures on my desk so you're never far away.
ReplyDeleteI love this verse and am sending it to you with love.
Deu 33:12, "Let the beloved of the Lord rest secure in Him, for He shields him all day long and the One whom the Lord loves rests between His shoulders."
Asking for clarity as you meet with the doctors.