Saturday, March 28, 2009

Spring Break and other stuff

It's been a couple of weeks since we last updated....missed us? We'd all grown used to having almost daily contact but now that there are no more appointments, diagnostics, etc it won't be quite so often!

It's taken a while to mentally and spiritually process the long-term ramifications of the results of all the testing but we are now setting about the task of adapting to our new "normal". Ron's spirit's have been good; it's obviously disappointing things are as they are but, we play the hand we've been dealt and go on from here. We choose to remain hopeful that he will continue to progress and make a complete recovery with some day being able to go about all his pre-medical trauma activities; but in the meantime....

He's trying to keep up with daily physical therapy, along with 2 walks around the block, and is doing pretty well, but has not been able to increase as yet.

Weight has remained steady; still at 12-15 lbs gained since being back on TPN.

He is back on the Nystatin (swish and swallow med) due to thrush. (I don't think he's real consistent in taking though, which is prolonging the nasty ordeal)

Been pretty strict about sticking to protein drinks; not venturing into puddings, ice cream or textures of any kind since that doesn't seem to sit too well. (Although, he did take a bite of birthday cake & ice cream a couple weeks ago, and one of mac n cheese this week) Had an episode of yakking yesterday; first time in 10 days!!! WOO HOO!!!

Crazy PICC seems to draw blood every other week; on the weeks it won't draw, he has to be stuck. Ugh! But PICC continues to consistently flush well and we've had no problems with TPN infusion.

Nothing has really changed as far as what we've been dealing with, other than knowing this could very well be how things are for the rest of our lives. No one knows the level of activity he'll be able to eventually achieve or at what point he might plateau. It's always easier to deal with a challenging situation when you know there is an end in sight; and what that end looks like, but when there isn't and you don't....it can be unsettling.

My spring break was extremely busy, but very quiet. Springtime brings about the tasks of cleaning flower beds, pulling weeds, trimming shrubs and the basics of getting the yard in shape. The weather was perfect for it and the solitude of working in the yard each day allowed time for God to speak to me and work me through the anger, disappointment and frustration to a point of peace and trust that He is still in control.

Also, over spring break we were able to get our tax stuff together and over to our wonderful CPA and finalize the Social Security paperwork over the phone, no appointment necessary, thank goodness. We received a call earlier this week that the paperwork has now been sent to the Medical Examiner and we should hear something within 120 days.

Somehow, in the midst of all the spring yard cleaning, I got into some poison ivy; bad enough that I ended up having to go to my doctor for treatment with oral and topical steroids. Dr. L once again blessed us by declaring he was paying for my copay! That very same day my principal, Mr. B, presented me with a generous financial gift from the awesome staff at Smithfield Elementary. God continues to bless us through so many of you!

I've had many people asking what we need, or how they can help us and honestly; I don't know. We're just trying to take one day at a time and other than normal stuff of running a household and working; life is pretty much rocking along.

We appreciate your prayers as well as your e-mails, calls, cards and words of encouragement.

Much love,
Christie

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6

A very familiar verse, but one we often overlook. It's only when we are trusting God, leaning on Him and making Him a part of every area of our lives that we will receive His wisdom and ability to walk the path He has laid out for us.

"If you cling to your life, you will lose it; but if you give it up for Me, you will find it" Matthew 10:39 NLT

We make the most out of life if we are willing to lose it in service to Him...unbroken and unbruised people are of little use. When self-sacrifice becomes the principle of the heart, then one's life becomes a rich, full blessing to others.

"Choose to love the Lord your God, and to obey Him,and to cling to Him; for He is your life and the length of your days..." - Deut. 30:20

Wednesday, March 11, 2009

Dr. S visit

We had a long visit with Dr. S today and it's always an exhausting day so I'll report as much as I can remember and if I think of anything else over the next couple of days, I'll update then.

Consensus is Ron has acquired motility disorder (which means his intestines aren't functioning properly!) There is no clear cut reason as to why, but many issues factor in: multiple traumatic surgeries causing scarring and adhesions; tethering due to adhesions; neurogenic (nerve dysfunction). And in Ron's case, this is a widespread issue...lack of motility is evident in many segments; not just one.

Scar tissue from any surgery typically takes about 2 years to mature. And often times adhesions will soften and motility be restored as time goes on. This is what we are hoping for.

At this point in time surgery is NOT an option. Since it has only been since April 18, 2008; Dr. S says he is "not too depressed" about the situation but if it were already 2 years out, then he would be depressed. The only reason Dr. S would perform surgery is if there were an emergency due to blockage and there was a defined segment of bowel that needed to be removed. He also reminded us to keep in mind that Ron barely survived but he IS here!

Dr S also recommends Ron continue on TPN, and that it is very important that he continue with the protein drinks. The intestines only get fed directly by what passes through (whereas the rest of the body can receive nutrition through the bloodstream). He is severely deconditioned but as he receives better nutrition the hope is he will be able to increase physical therapy and build muscle mass.

If Ron continues to have vomiting several times a week, we made need to look at having a stomach tube put in. This would relieve the vomiting by allowing the stomach to be vented when stuff gets backed up. Vomiting this often is not good for anyone and can lead to many problems such as: malnutrition, aspiration, eroding esophagus, and ruining of tooth enamel.

Bottom line is: this is the way things are and we need to deal with it! Two years down the line we may visit again and rethink surgery option with quality of life being the driving force.

As we were leaving the office, we were once again reminded of how blessed we are by having such caring and compassionate doctors. Dr. S told his office staff not to charge us, we've been through so much together we're family!

Thanks for your prayers. We are doing well as we walk this path God has laid out for us knowing He promises to never leave or forsake us!

Much love, Christie

Sunday, March 8, 2009

Long Overdue update

WOO HOO!!! After months of preliminary work, praise God we finally got the first portion of paperwork filled out for social security disability...it was a beating; but, it's done! Next step, an appointment with the SS office; something fun to look forward to on my Spring Break! I know there will be more paperwork from there.

Yesterday we had a little concern when Ron got up feeling pretty crummy. I came home from running errands around noon to find he had a temp of 100.8; not good! Our first thought was PICC line. I took him to our family physician's on call doctor at their after hours clinic where they first thought he had the flu; but he didn't have a cough, sore throat or congestion--just the fever with joint and body aches. He tested negative for both strain A & B so they did bloodwork which revealed his white blood cell count was 17,700. Since there was no clear cut evidence as to what we were dealing with we were told to give him Tylenol and if he got worse to go to ER at Presby. Praise the Lord this morning he got up feeling much better and has had no fever. Crazy!

Anywho,

Good news:

I can tell TPN is DEFINITELY helping. He still has a desire to eat "real food" but knowing he is receiving good nutritional supplement has taken the pressure off of feeling he has to force himself to constantly be eating or drinking which also relieves the fear of vomiting. He is now back to doing his physical therapy on an almost daily basis and taking at least 2 walks a day (instead of spending all of his days dozing in the recliner! ) Even the kids have said they can tell he is more engaged in what is going on as opposed to having no energy/desire to join in on conversations. He has even spent several afternoons sitting outside visiting with our neighbors while I did yardwork.

He has gained about 10 pounds and has kept it pretty stable for the last few weeks.

Ongoing issues:

Edema is still a problem and by the end of the day, his legs are quite large (as always, especially his left).

He is also having alot of heartburn (combined with the chronic reflux) which has led to several episodes of vomiting bile; but being back to just liquids has reduced vomiting episodes from daily (or several times a day) to a few times a week.

Experiencing problems with PICC line, homehealth nurse was been unable to draw blood from it last week and each time she stuck him, the vein "blew". We're able to flush the line and TPN has no problem going in, it just won't draw. Nurse will try again with PICC line on Monday, but if it won't draw he'll have to go to IR at Presby.

We have an appointment with Dr. S and Dr. A on Wednesday, March 11 to discuss thoughts now that we know the extent of the intestinal tethering from adhesions/scar tissue. Please pray for discernment as well as peace.

A couple weeks ago, as I was sitting in the waiting area at Baylor searching for some word of comfort/hope; God led me to this verse:

"though a righteous man falls seven times, he rises again..." Proverbs 24:16

which reminded me of Hebrews 12:12 (NLT) which says:

"So take a new grip with your tired hands and stand firm on your shaky legs."

No mattter our circumstances, God holds us in His hands and it is in His strength that WE WILL rise again.

Much love to all of you!

Christie

It's here!!! Ron tells his story

Love it when my hubby shares!. Though a very condensed version, Ron eloquently shared with our youth group a few weeks ago. Below are his th...