Day 78 - September 1 - More

More prayer requests for Connor regarding the move. First, the folks at Valley have different protocols than they do in Fresno. What this means is that they have different ways of thinking about medications, equipment, and techniques. We already know that when Connor gets there, one of the first things they do is evaluate his meds and take away stuff they deem unnecessary. We're good with getting rid of any meds we can, but we also know that there are other issues with changing his medications in this situation, many of which involve him having to adjust to changes or to doing without. That equals more stress on top of the move. Additionally, the medicos at Valley have told us that his first 48 hours will be a whirlwind of activity while the whole team leaps into action to measure, evaluate, test, poke, and prod to determine his status. So far he hasn't really responded all that well to whirlwinds of activity. Pray for his strength, patience and endurance during this time. Pray that he, and we, reflect well upon our Lord as the staff of the facility looks at us closely.

Second, I found that of the swarm of medications the boy is on, at least three of them react with each other to suppress either respiratory function or the function of the central nervous system. Pray that Valley will recognize this and come up with alternatives which don't have these effects.

Third, he has developed a slight fever today, which we think may have been caused by his IV infiltrating and going bad. It's better if that's what caused it, because the fever should abate quickly now that they've taken the IV out. The concern here is that Valley won't take patients with fevers. So, another prayer request. An additional concern is that they've decided to not put another IV in. This is good, but it also means that now Connor gets medications via mouth or his PEG tube, both of which are not as quick to act. Not a huge issue, but one that effects the boy directly and so has a great impact on his mental state.

FInally, there was a word posted on the Guestbook page that moved me so that I wanted to share it with you. It was the words to a famous old hymn, and these two ladies presented it to us in such a way that I sang along with the words as the melody rang in my head, and it ministered to me. Here's a partial quote:

As I just read your blog, the song "Day by Day" came to mind. Sing it with me:

Day by day and with each passing moment. Strength I find to meet my trials here.
Trusting in my Father's wise bestowment, I've no cause for worry or for fear.
He whose heart is kind beyond all measure, gives unto each day what He deems best.
Lovingly, it's part of pain or pleasure, Mingling toil with peace and rest.

Help me Lord when toil and trouble meeting, E'er to take as from the Father's hand.
One by one, the days, the moments fleeting, "Til I reach the promised land."

Thanks, ladies.

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