Last night I noticed David had lifted up his arm and was looking at his hand. A little later I saw him taking turns raising each arm, rotating his hands slowly. When he went to bed, he was stretching his arms out backward up over his head.
Then it hit me, the steroid injections worked! His pain/stiffness, etc. had improved so much in 3 days that this movement was possible! Just as an extra test, he even let me rub his neck and shoulders some at the joint. How grateful I am that this was possible, for a great doctor, and insurance.
Monday, May 18, 2009
Thursday, May 14, 2009
Normal
"Normal is just a setting on a washing machine". I'm going to make a big sign of that saying to hang on my front door. Today I was strongly reminded that Normal is when the Lord lines up ways to protect David. With all the pain David endures, the Lord has repeatedly guided our path when danger was approaching.
First, the good news! David went back to STEPS this week - half day Monday, all day Tues and Weds. Oh, he was one happy soul. ROutine is everything to him, and being with his friends.
More Good news - Late yesterday I found out that David could have the steroid injections in his shoulder done at 1:30 today. But, it must be under anesthesia.I start calling to get clearance for(anesthesia)from kidney docs. No response.
My girlfriend Leslie arrived at 5pm yesterday so I could go to a bridal shower.Rusty tied up with meetings for 2 days. After I got home, she spent the nite, and got up and down with David who wasn't sleeping well.
Sometime during the early morning, his feed bag of formula ran out. When we checked his blood sugar at 7 am, it was a 13. Once he went into a coma at 30.
My other girlfriend Charity shows up. Panicked, the three of us are shoving jam & juice in him. In 10 mins. he's back at 135, and we get to avoid an ambulance call.
Even tho I haven't gotten ok about surgery, we proceed with clear liquids as if it's going to happen. An hour later I finally talk to one of the docs - she had been given wrong message,thought I was asking them to schedule it! Gives the ok.
Arrived at the hospital at 8:45,get blood drawn at 9:15. Due to Prograf, David's very touchy, had a hard time sitting still for the lab work.
At 11 am we turn off the pedialyte and head over to anesthesia for pre op insertion of the IV line. Dextrose solution will keep his blood sugar steady.
Amid yelling, pulling and hurting, David gets stuck in 6 places, endures painful fishing for a vein, and 90 minutes later, still no IV. His blood sugar has gone back down to 85, so I start asking for a glucagon pen in case he drops again. They call in the anesthesiologist and he is finally able to get the line going, but with great difficulty. David relaxs, and Leslie and I take a deep breath.
Good news - the procedure goes great and is over in 15 mins. I went to sleep in the chair, Leslie went out to see the sunshine. Dr says 3 days to see results.
By this time Leslie has been with us for 20 hours, and has lifted David at least 20 times since breakfast. That is a friend, and a big part of the blessing.
Last nite she noticed D's right eye was red. I just figured it was irritation.
After recovery, I notice it is still very red. I assume it's an eyelash, so the nurse gives me an open vial of saline to flush it. If he had left it closed, I probably would have waited until later to use it.
When I open the eye, I freak out because there is a HUGE -pointed -knot, pimple thingy inside the upper eyelid! I call upstairs to his eye doctor, and beg to be seen asap. He's out of the country, but the nurse knows us, and gets us in.
Another doc looks, isn't happy, puts dye in D's eye, looks again, is less happy.
THEre's an obvious white dot on the cornea.
He calls in another, older doc - who becomes very, very unhappy.
He says David got poked, scratched, whatever, and has a really bad eye infection.
We get a prescription for the strongest eye antibiotic there is, to be used every 2 hours. Even tho the doc has surgeries all day tomorrow, he says he will meet us at 2:30 to recheck the eye. THIS IS WHY WE LOVE OUR DOCTORS and NURSES!!!!!!!!!
We get home at 5pm, get the drops, and after a stressful 24 hour marathon, Leslie heads home. (she also missed giving a 4 pm riding lesson). Rusty arrives, David and I pass out. Two hours later we wake him and do the drops again. By 9:30 the red streaks are greatly reduced, and he has stopped rubbing his eye.
Like I said, I am grateful to see that Normal is the Lord blessing us - because Leslie was here, she noticed his eye. Because we had the procedure, we were at the hospital. Because the nurse opened the saline, I looked in his eye. BEcause the eye nurse knew us, we got right into the eye doc. Because of eye dye, ultraviolet lights, and research, we have an Rx for antibiotics. As much as I hate the ups and downs, I am thankful to the Lord for his version of normal.
First, the good news! David went back to STEPS this week - half day Monday, all day Tues and Weds. Oh, he was one happy soul. ROutine is everything to him, and being with his friends.
More Good news - Late yesterday I found out that David could have the steroid injections in his shoulder done at 1:30 today. But, it must be under anesthesia.I start calling to get clearance for(anesthesia)from kidney docs. No response.
My girlfriend Leslie arrived at 5pm yesterday so I could go to a bridal shower.Rusty tied up with meetings for 2 days. After I got home, she spent the nite, and got up and down with David who wasn't sleeping well.
Sometime during the early morning, his feed bag of formula ran out. When we checked his blood sugar at 7 am, it was a 13. Once he went into a coma at 30.
My other girlfriend Charity shows up. Panicked, the three of us are shoving jam & juice in him. In 10 mins. he's back at 135, and we get to avoid an ambulance call.
Even tho I haven't gotten ok about surgery, we proceed with clear liquids as if it's going to happen. An hour later I finally talk to one of the docs - she had been given wrong message,thought I was asking them to schedule it! Gives the ok.
Arrived at the hospital at 8:45,get blood drawn at 9:15. Due to Prograf, David's very touchy, had a hard time sitting still for the lab work.
At 11 am we turn off the pedialyte and head over to anesthesia for pre op insertion of the IV line. Dextrose solution will keep his blood sugar steady.
Amid yelling, pulling and hurting, David gets stuck in 6 places, endures painful fishing for a vein, and 90 minutes later, still no IV. His blood sugar has gone back down to 85, so I start asking for a glucagon pen in case he drops again. They call in the anesthesiologist and he is finally able to get the line going, but with great difficulty. David relaxs, and Leslie and I take a deep breath.
Good news - the procedure goes great and is over in 15 mins. I went to sleep in the chair, Leslie went out to see the sunshine. Dr says 3 days to see results.
By this time Leslie has been with us for 20 hours, and has lifted David at least 20 times since breakfast. That is a friend, and a big part of the blessing.
Last nite she noticed D's right eye was red. I just figured it was irritation.
After recovery, I notice it is still very red. I assume it's an eyelash, so the nurse gives me an open vial of saline to flush it. If he had left it closed, I probably would have waited until later to use it.
When I open the eye, I freak out because there is a HUGE -pointed -knot, pimple thingy inside the upper eyelid! I call upstairs to his eye doctor, and beg to be seen asap. He's out of the country, but the nurse knows us, and gets us in.
Another doc looks, isn't happy, puts dye in D's eye, looks again, is less happy.
THEre's an obvious white dot on the cornea.
He calls in another, older doc - who becomes very, very unhappy.
He says David got poked, scratched, whatever, and has a really bad eye infection.
We get a prescription for the strongest eye antibiotic there is, to be used every 2 hours. Even tho the doc has surgeries all day tomorrow, he says he will meet us at 2:30 to recheck the eye. THIS IS WHY WE LOVE OUR DOCTORS and NURSES!!!!!!!!!
We get home at 5pm, get the drops, and after a stressful 24 hour marathon, Leslie heads home. (she also missed giving a 4 pm riding lesson). Rusty arrives, David and I pass out. Two hours later we wake him and do the drops again. By 9:30 the red streaks are greatly reduced, and he has stopped rubbing his eye.
Like I said, I am grateful to see that Normal is the Lord blessing us - because Leslie was here, she noticed his eye. Because we had the procedure, we were at the hospital. Because the nurse opened the saline, I looked in his eye. BEcause the eye nurse knew us, we got right into the eye doc. Because of eye dye, ultraviolet lights, and research, we have an Rx for antibiotics. As much as I hate the ups and downs, I am thankful to the Lord for his version of normal.
Saturday, May 9, 2009
Sleep, Drugs and Bones
David has started sleeping again - the last two nights he's been peaceful, and a nap or two in the daytime, but he's still biting his fingers and moaning when he's awake. Ortho/bone doc thinks an injection of cortisone in the AC joint might help with the pain. David touched my "yes" hand when asked if he wants to try it...
Prograf apparently was the culprit with being wired all night. It is a very powerful anti-rejection med, actually toxic to the kidney if the dose is too high. David's level was out of whack, and as soon as they had us skip a dose, then lower it, he began to sleep again. There are lots of things they don't tell you pre-transplant....
Prograf apparently was the culprit with being wired all night. It is a very powerful anti-rejection med, actually toxic to the kidney if the dose is too high. David's level was out of whack, and as soon as they had us skip a dose, then lower it, he began to sleep again. There are lots of things they don't tell you pre-transplant....
Tuesday, May 5, 2009
David
I kept waiting to do a post about David cause I wanted to take a picture of him. His skin color looks good, but he is having a very hard time with pain. He goes to the doc twice a week, his labwork shows that the kidney is working great and the incision looks good, but he's hurting. He's hurting all the time. Rusty hasn't slept all night except twice in 2 weeks when other people spent the nite, because David is awake and moaning off and on all night. Various docs are talking, and done some extra tests looking for infection, but so far nothing and everyone is baffled. At first the muscle relaxant helped, now it doesn't seem to make any difference. The pain killer oxycodone doesn't make a dent in it, and the sleeping pill ambien is only working for a few hours at a time. It's hard to not be discouraged right now.
Sunday, May 3, 2009
Flowers in Our Garden
I borrowed these adorable pictures from Kristi and Tracie. Top to bottome are Spencer, Carter, Brooke, Cami, Peter, and Paige. Today we had another encounter with the Phantom Phamilee Photos. For two years my wonderful kids have tried to set up a portrait shoot for my Mother's day gift. After all the planning - we woke up to rain today. Then we learned that Peter had developed a red rash that wasn't responding to benadryl...turned out to be viral, so even with sunshine we would have canceled due to David's suppressed immune system. A shame, because David and I both got some springy new clothes. We'll have a little fashion show soon.. Thanks to my sweeties for all your efforts. Trying to dress your children in Easter finery early on a Saturday morning (and keep them all clean) is no small feat...
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