Been a while since I've updated strictly on what's going on with Ron (and me) so I'm devoting this post completely to us (besides, haven't seen our girls since Easter so don't have any news or pics of them; must remedy that SOON!)
Things have been rockin' along here without much change; other than Ron having issues with his PICC line (which was only 6 weeks old) requiring replacement on Good Friday. What better way to spend a holiday than a little trip to Presby, right? And we had the added bonus of seeing Aaron while in Dallas for the afternoon!
We were so thankful they were able to utilize the same location and replace with a single lumen, as opposed to the double lumen they removed. Now that he only needs blood draws every other week and has not required daily injections of any kind in quite a while; they felt comfortable in downsizing to the single which can be used for cyclical TPN as well as the blood draws. It's frustrating to see that he developed fibrin so quickly this time. I know any time there is a foreign body in our system our natural defenses will do what they are created to do, which is protect; in this case by creating fibrin (clots). Fortunately, this does not interfere with "pushing" TPN or flushes, however once the build up occurs, "drawing" becomes an issue. Unfortunately, as long as he is on TPN, this is a battle he will continue to fight. We're praying this one will last much longer.
Ron continues to take 2 classes at Tarrant County College; .
His schedule is:
Monday: 10AM-noon Anatomy & Physiology lab; 6PM-7:20PM A&P lecture
Tuesday: 2:00-3:20PM Pre-Algebra
Wednesday: 6-7:20 PM A&P lecture
Thursday: 2:00-3:20PM Pre-Algebra
He enjoys taking the classes and the mental interaction is great for him. However, it pretty much takes all of his time and energy to participate in the classes and keep up with the homework.
Home health comes weekly to do PICC line dressing change, and draw labs every other week. His meds remain the same however he had to add Metronidazole (antibiotic that specifically battles intestinal bacteria) for a week and Dr. A had to tweak his TPN due to elevated sodium and phosphorous this week.
He still lacks much stamina/energy and most often yaks on a daily basis. He desires the enjoyment of eating, the socialization of it, but the consequences aren't fun; therefore he pretty much dreads eating. Then again, it doesn't seem to matter if he eats, he yaks either way. I can't imagine dealing with that stomachache that causes a bloated, nauseous feeling all day every day, regardless of what he does; poor guy. He's a trooper, though, and rarely complains.
Having a "laid back" personality is one of Ron's biggest assets. He's always been a go-with-the-flow, take life as it comes kind of guy. This trait is what has gotten him through this seemingly never-ending ordeal. Unfortunately, this same trait easily becomes his greatest enemy. He has become quite lackadaisical.
A couple of months ago it became evident it was time to implement some "tough love". One of my sweet co-workers brought to my attention that my constant reminders and "doing for" Ron may subconsciously be robbing him of his dignity; while also putting the added responsibility of not only being his wife, but basically his world, on my shoulders.
Ron's an adult, capable of making choices for himself. If he chooses not to do those things he knows to do (take meds in a timely manner, daily physical therapy, etc) then it's up to him to deal with the consequences. This has been VERY HARD; especially since those consequences affect both of us!!!
And, yes, I know, Ron's quite spoiled! By his own admission, he likes for me to remind/do for him and one of my greatest joys in life has always been to care for my husband and children. But I think I've created a monster! My guy tends to only do what he wants to do and it's important that he begin to take ownership. Don't worry, we haven't been doing this cold turkey. I've slowly been relinquishing (read forcing on him!) some of these duties. Where it used to be "here are your meds", "time to do your physical therapy", let's go for a walk, now", "here's you some juice". I'm now struggling to keep my mouth shut and not ask: "Did you remember to take your meds? Did you do your physical therapy? Have you gone for a walk today? Had anything to drink lately? What have you eaten today? Isn't it time to get TPN ready?", etc.
Though I'd been trying to take it slowly, it is now time to get hard core. As difficult as it has been, it's time for me to give up this juggling routine and have him be accountable for self-care, along with daily living activities. And believe me, it's been HARD; especially when I KNOW he hasn't taken his meds or done his physical therapy, etc.
Please don't think I'm ragging on my husband. that is not my intent at all! Just giving you a glimpse into our world. And, might I remind you, God is the king of tough love! Just take a look at the old testament and remember, due to lack of obedience, how many of the bazillion Israelites actually were allowed to enter the promised land ? Now, I'm not trying to set myself up as God...no way! Just sayin', I'm in good company here. And don't worry, I don't plan on banishing Ron or anything that drastic if he doesn't follow through.
On another note, I'm really proud Ron's been trying to step out in faith a little more and has started attending a men's breakfast every Friday morning at 6:30 AM. I thought he was crazy when he told me he'd signed up for this one in particular after the men's conference. He doesn't sleep well due to all his reflux issues and I was concerned about the early morning; why not choose one that meets at another time? However, he was determined. He's enjoying it immensely, however, the cost is he spends the rest of Friday recuperating from the early hour/lack of sleep! Oh, well, gotta start somewhere, right?
During this time of adjustment I'm claiming (for both of us):
"I can do all things through Christ who gives me strength" Phil 4:13
1 comment:
Hi,
I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.
Check out our web site at www.oley.org. For a good overview, click on the "New to Oley" button.
In particular you might be interested in our new online education program and guides for preventing catheter (including PICC line) infection found at: http://www.oley.org/Education_Module1.html
Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.
Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY
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