A quick update:
Little is stable and has had no arrhythmias for 48 hours! They are decreasing the medication that targets this specific issue and transitioning to a milder version later today. *We won’t stop praying for an absence of arrhythmias.
She had struggles with low blood pressure on Thursday night but it has stabilized as well and she has come off of the medication targeting that problem. *We won’t stop praying for stable blood pressure.
Little is still lightly sedated but they have removed two medications that were helping her sleep. There are plans to continue reducing sedation throughout the day and there’s hope to remove the breathing tube either late today or early tomorrow. This will be a hard process. She will be delirious from all the sedation and that will add to the discomfort that already comes with having the tube removed. I am pretty sure I am not strong enough to watch all that and so Jeremy has said he’ll handle it and I will probably wait down the hall or in our room. *We won’t stop praying for Little and for her transition off the breathing tube to be smooth and eventless. We’ll pray that she will not be scared or hurt.
The immediate concern at this point is that she still has a fever. None of the cultures they have sent away are growing anything and the antibiotics she has been given should have affected the Cdiff enough that the fever shouldn’t be a response to it. There is concern that something is being missed. We were present during rounds today and were able to share with the doctors that Little’s neurological issues have caused temperature regulation to be an issue her entire life. They were actually excited by this information and decided to use aids to adjust her body temp (cooling blanket, etc.) to see if they might help her to regulate her core temperature. If what’s happening is an actual fever, then this won’t really work but if it’s neurological, this could be key! *We won’t stop praying for answers about Little’s body temperature to be reconciled. If Little’s fever persists we will pray that the source will be discovered and able to be treated.
Jeremy and I have checked into the Ronald McDonald House for the time being. The provision this place affords is overwhelming. It’s 2 part dorm life, 1 part hotel life but it is more than I would have hoped for or imagined. Walking through the lobby I just kept thinking how much my kids would love it. *We won’t stop giving thanks for the ways the Lord has provided throughout the journey of the past five months.
SO MANY people have prayed for our Little over the past two days and my heart is full to bursting. Knowing that so many are lifting our daughter before the throne of grace is so encouraging and is having effect. If friends will keep reading and praying then I won’t stop sharing and HE promises He won’t stop answering!
“What a Friend we have in Jesus,
All our sins and griefs to bear!
What a privilege to carry,
Everything to God in prayer!
Oh, what peace we often forfeit,
Oh, what needless pain we bear.
All because we do not carry
Everything to God in prayer!
Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged;
Take it to the Lord in prayer.
Can we find a friend so faithful,
Who will all our sorrows share?
Jesus knows our every weakness;
Take it to the Lord in prayer.”
— Joseph Medlicott Scriven