Saturday, September 24, 2005

Tough conversations, Magna Doodle pen pals

As of today, kidneys & liver still not functioning. I'm told that it'd be unrealistic to expect them to "kick in" like they did weeks & weeks ago. It'll be a much more gradual process. So we're just expecting dialysis once in a while. After a few days of relatively low fever, she crossed the 103 mark again. The feeding tube has been stopped and IV nutrition started last night. She's had a couple bowel movements, so we're glad for that, but a few times she's vomited up water & Tylenol (that Flexi-Seal was reinserted today). Earlier today her heart rate & breathing rate started racing, and they had to turn the oxygen concentration up to 50%. So up to that point, things seemed just a tiny bit worse today than yesterday. Then just before dinner, they started her on a morphine drip & gave her some Ativan to relax her. Her heart rate was back to the 120 range, breathing still fast (30s), blood pressure holding about 117/77, with the help of 5 mics/min of blood pressure medicine, oxygen concentration 40%. At that point, she was pretty close to yesterday's condition. I'm not going back tonight because I've got a sore throat. It's a drag, not only because I can't see her, but also because tonight's nurse is pretty tight-lipped about what's going on, especially over the phone (those privacy regulations are in place for good reasons, but I wish they didn't exist right about now).

Yesterday was more interesting.
After Thursday's removal of 6 liters of fluid, her blood pressure dropped. This was to be expected, but it was still a bummer to see 89/57 on the display. Later in the day she stayed around 109/66. Heart in the low 120s. Respirations low-mid 20s. We got a good bit of news in that her hemo count was over 11, white count 10.8, plateletes a little low (apparently due to antibiotics?). These numbers are several days after her last unit of blood. So I believe that the marrow is chugging along OK.

But that wasn't the interesting stuff. Our "conversations" were. She wrote "So what happens." She wanted to know both what happened recently that everyone's been talking about (last Saturday's crisis), and what's going to happen next. I tried to explain things as best as I could understand them, in a way that wouldn't alarm her or cause her to lose hope. Speaking of hope, I had just finished the chapter on hope in the book I'm reading. That was pretty handy in talking to Denise since yesterday. She was also able to speak, saying "I love you" and "They leave it (the tracheostomy cuff) open sometimes." Given the vomiting, I asked a respiratory therapist to come check the cuff, and he said it was good... she was just getting enough air to force words out sometimes in spite of the cuff. Denise wrote that she had a dream wherein she was pregnant with twins. She also wrote, "If this don't go well I'll be stuck (here)." I asked if she was afraid of being stuck in the hospital for life, and she nodded. I asked if she was scared of dying, and she nodded. So I tried to pull it together once again for the pep talk about how well she's done already, there's a great team taking care of her, her fighting spirit's helping, how much prayer's going into this ordeal, how she's better now than she was 8 weeks ago, how she's a long way off from dead (she gripped my hand really hard as if to prove it)... I also made mention again that if she doesn't make it, we've got the hope of seeing each other on the flip side. Then I thought of something that was emailed to me by some neighbors of Denise's parents. In addition to the pep talk about not losing hope, and in addition to the reassurance that our faith provides in the event of physical death, the sick loved one may need "permission" to depart us; they need to know that we'll somehow be OK if they die. So I told her that, as eloquently as could be expected, bookending it with encouragement. Of course, it's just about impossible to feel like we'd be OK without her. These are just not conversations that I expected to have at this age. I received an email from a "friend I haven't met yet" that said they secretly wished their spouse wouldn't be around most of the time, because then everything would be so much smoother, but our ordeal has changed that thinking. Good. It ain't worth having someone gone just so you don't fight over squeezing the toothpaste from the middle or the bottom. By the way, Denise & I found a one-cent solution that licks that problem. As you use up the toothpaste, fold up the tube from the bottom, holding the folds in place with a large paper clip as you go.

Gracie has been asking if she can visit more frequently lately. I told her that mommy is still sick and needs more rest, so the kids can't visit right now. Overhearing us (me & Denise's folks) talk about what Denise had been writing, Gracie came up with the idea of drawing a picture on a Magna Doodle for Denise, then Denise could erase it and draw a picture for Gracie. So Gracie drew a ballet dancer. Denise erased it and drew a fox (Denise & Gracie love the movie "Fox & the Hound"), and wrote "I Love You." So I tote a Magna Doodle back & forth now for the Magna Doodle pen pals. Both seem to have their spirits lifted by having this form of interaction. Denise is drugged up and weak, and still a much better artist that I am.


Anonymous Marvelle karahadian said...

I am touched by the Magna Doodle story so much! God has gifted Denise with art and even in this weak state, He has given her a way to communicate with her little girl. That right there is a message of hope! So sorry you are feeling under the weather physically. May God grant you rest and peace.
Marvelle Karahadian

September 25, 2005 6:50 AM  
Anonymous Anonymous said...

Lots of love and encouragement coming your way. I am thankful that God is giving you the words and bookends and strength to have the conversations you are having with Denise. We are praying for double-whammy healing.
love, Terry M.

September 25, 2005 8:07 AM  
Blogger Call Me Grandma said...

Prayers and more prayers being said for Denise. That is a wonderful idea about the magna doodle. God Bless.

September 25, 2005 9:42 AM  
Anonymous Anonymous said...

You are a very brave and wonderful husband. Denise is so very blessed to have you. Your faith and response to this crisis is amazing...From what I've seen in my years in nursing - you are doing all the right things.
Bless you and always praying for you all.
France & family

September 25, 2005 4:28 PM  

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