I sat beside her bed last night, and sang to her. A week ago this morning, she had surgery for a mass in her colon, and I knew that we had a rough road ahead. Cecilia either does a whole lot better than expected or she breaks all the rules for everything that are in place for a speedy and relatively healthy comeback.
There are so many limitations. She will not blow into the incentive inhalation spirometer to prevent pneumonia following surgery. She will not cough. She has an ability to hold an incredible amount of urine and she will not go unless she decides to. (1,000 cc on a straight cath? Really??? Why don’t you just go??? And for those of you who don’t think in cc’s — that’s over a quart!) She doesn’t like to walk. Her veins are so incredibly inadequate for all the medications and tests that they need to do. And she is non-verbal. She cannot tell you anything she wants, needs, or feels. And she is blind. So she cannot see what’s happening or communicate with her eyes.
So we went into surgery last Tuesday morning, and things went so well that there was talk in recovery of discharge in two or three days. It really did go extremely well. But things have gone steadily downhill from there.
Pneumonia, a UTI, fever, IV after IV line blown and multiple attempts to restart. Foley Catheter removed, then replaced. Then removed. Success for a day. Then a bowel obstruction. A straight catheter in hopes of not having to replace the Foley. Then a replacement of the Foley because of the misery of the bowel obstruction and difficulty with any kind of procedure that involves getting her up and down. Spiking fever, and through it all, pain, pain, pain. I’ve watched this Cecilia girl through so many things, and she doesn’t acknowledge pain until it is unbearable. Then she has this noise that she makes in her throat — (not the squeal that she reserves for needle sticks, and believe me, there has been PLENTY of THAT noise) but another, “hooking her breath” then a guttural, breathy moan noise that is not what the nurses are looking for. And since she is NPO (Nothing By Mouth) she has to have her pain medications by IV. But the rules are, “No IV pain meds are allowed to be scheduled.” She has to ask. (REALLY???) Or the nurse has to deem her “uncomfortable.” Most of the time they try to stay on top of it, but if no one is in there to observe her who knows her and knows the signs, it’s easy for her to get really uncomfortable before anyone gives her anything.
Her Mom and one of her sisters have been there parts of every day except one. It’s a long ride from Wilmington for her 87 year old mother. Cecilia’s two sisters alternate in bringing her, but it’s hard for them, too. They worry about their mother. Her health isn’t the best. And Cecilia’s Mom worries, too. About Cecilia, of course. Wants to make the right decisions for Cecilia, but doesn’t want her to suffer unduly. Wants to KNOW about everything that is done and why it has to be done. Wants to make sure that Cecilia is given the attentions she needs and isn’t left without being checked on. Whew! It’s a hard thing to manage from so far away. This whole thing has her in such a torque, not only for the present, anxious and heart wrenching situation, but also as she looks to the future and treatment for what brought Cecilia into the hospital in the first place.
Sunday night, after coming home from the hospital around ten o’clock, and feeling like Cecilia’s room had become a place of anxiety and tension and sadness and even chaotic hurrying because of the busy nurses and the completely full floor, I thought long and hard about what we could do to make the room a place of tranquility and calm. A place where doctors and nurses and family come and feel peace. Where professionals and commoners alike could find affirmation and co-operation and would know that, no matter what the outcome of this whole thing would be — whether Cecilia lives, or (Oh, Lord Jesus, please!) whether she doesn’t, that Jesus is in This Place! That people would know Cecilia is loved, and that she matters, but that she ultimately belongs to the Father, and that we trust HIM to hold her tenderly and to give them wisdom for the decisions that need to be made, and the procedures that need to be done. I know that they cannot always find the vein, know the pain, understand the needs or even feel compassionate towards this patient who cannot respond to them in hardly any way. But if Jesus is there, and His presence is felt, we will all be far better off and much more able to do the right thing, free of guilt, pride, fear, or even that anxious sorrow that can sometimes drive our thoughts, actions, reactions, and decisions.
To that end, will you please pray for us? Pray that it will be a good day in room —? Pray that Cecilia would be calm, and that the tests that are needed today could be done with a minimal amount of pain for her. Pray for peace for us all, and that the decisions made today would be under the careful direction of the Heavenly Father.
For the very presence of Jesus, a Heavenly Father who knows our Cecilia-girl and each of us, and for friends who pray —
My heart gives grateful praise.