Well, our Nordell Christmas vacation was a success, but the recovery has been hard; with yesterday being an especially rough one. Ron was exceptionally lethargic yesterday after a sleepless night (due to severe reflux which culminated in a puking episode early in the morning.) He continued to feel puny all day nausea and stomachache on top of a really BAD headache. I couldn't get him to drink or eat anything and was having visions of spending another holiday at Presby. Thankfully, his temperature and blood pressure were both normal so I was trying not to get overly concerned. He slept off and on ALL DAY and just looked bad. He did get up for a while in the evening and I convinced him to eat some eggs and toast but then back to the recliner and sleep. He's still sleeping this morning, but I'm hoping today will be a better day.
Needless to say, my plans to whip him back into shape have fallen by the wayside! But I'll take a little backslide any day, as long as it doesn't land us back at Presby (not that there's anything wrong with it!; just not how I'd like to spend my time this holiday season...or any other time, really)
So, it's been rather quiet around here. I'd like to say I've spent this time getting alot of those things on my never-ending "to do" list accomplished, but.....I've been rather lazy; just trying to take care of my guy. I do need to get busy, tho; there's much to do before I head back to work Monday, most importantly thank you notes! Yes, I'm still trying to get those out and no, I have not forgotten any of you (at least I hope my records are straight!)
As you celebrate the beginning of this New Year; know you are ever in our thoughts and prayers! Please pray this will be a "medically uneventful" year for us!
Love, Christie & Ron
"May the Lord of peace Himself always give you His peace no matter what happens. The Lord be with you all." 2 Thessalonians 3: 16 NLT
Wednesday, December 31, 2008
Sunday, December 28, 2008
Catching up...
The last couple of weeks before Christmas were very hectic. Alot of things going on with no time to keep everyone up to date. So, I'll try to catch you up...
Ron hit a pretty rough time about a week before we were to leave for our Christmas vacation. And honestly, I was beginning to doubt the wisdom of going. Extreme fatigue, weakness, increased reflux and regurgitation, as well as continued weight loss. Results from his routine blood work showed a marked increase in his white blood cell count (19,000) which led to orders for a CT scan to check out abdomen, pelvis and chest.
The timing of the CT on Wednesday, December 17, worked out well; we had plans to take Christmas snacks up to the nurses at Presby on that day so we were able to take care of both things at the same time! It was great to be able to bless these wonderful nurses who ministered to Ron (as well as our entire family!) for so long with such professionalism, care and compassion. They hold a very special place in our hearts. It was a very rough day on him but he was determined to stick it out.
We also saw Dr. Shires and he reminded us "the rule of thumb for rehab after a lengthy illness is 3 days for every day in hospital. So you're still looking at a good 21 months or so". I know we've been told this before, but it's still hard to hear; especially for Ron. And as we talked about it later, he admitted it was very discouraging, but he did agree at least it's good to know that his lack of energy and his extreme fatigue is not unexpected or out of the ordinary. As hard as it is to imagine, he's still got a very lengthy healing process ahead.
We received CT results Friday before we left which showed "no abscess or infection in the chest, pelvis or abdomen. And no abdominal abscess, inflammation, kinking or blockage" All good news. (Another blood workup was done before we left town and white blood count had considerably decreased, now at a slightly elevated level of 11,000) .
Reflux and regurgitation comes and goes. Extreme fatigue goes without saying. For instance, after going to church, he has to come home and take a 2 hour (or more) nap. I also know he doesn't interact with others because it requires so much expended energy it's exhausting. If you notice, his entire posture looks very stiff (especially the way he holds his hands at an odd angle) which is caused by muscle fatigue and tightness. And he often struggles with difficulty sleeping at night.
He did pretty well on our Christmas vacation; some sinking spells and a few puking episodes but overall it was a good trip. It was great for him to be surrounded by his family. And of course there was plenty of family there! As well as lots of great food to try to fatten him up a little! Only one afternoon did things get really bad and he had to give in to a few hours in bed and a little bit of a pity party, but who can blame the guy???
Ron has spent today sleeping off and on; I'm trying to cut him some slack and have only forced him out for one walk and a short trip to the grocery store. But tomorrow, I'm hoping to start whipping him back into shape! (At least get him back into a more consistent sleeping, eating and physical therapy schedule).
Keep praying....God hears and answers!
Ron hit a pretty rough time about a week before we were to leave for our Christmas vacation. And honestly, I was beginning to doubt the wisdom of going. Extreme fatigue, weakness, increased reflux and regurgitation, as well as continued weight loss. Results from his routine blood work showed a marked increase in his white blood cell count (19,000) which led to orders for a CT scan to check out abdomen, pelvis and chest.
The timing of the CT on Wednesday, December 17, worked out well; we had plans to take Christmas snacks up to the nurses at Presby on that day so we were able to take care of both things at the same time! It was great to be able to bless these wonderful nurses who ministered to Ron (as well as our entire family!) for so long with such professionalism, care and compassion. They hold a very special place in our hearts. It was a very rough day on him but he was determined to stick it out.
We also saw Dr. Shires and he reminded us "the rule of thumb for rehab after a lengthy illness is 3 days for every day in hospital. So you're still looking at a good 21 months or so". I know we've been told this before, but it's still hard to hear; especially for Ron. And as we talked about it later, he admitted it was very discouraging, but he did agree at least it's good to know that his lack of energy and his extreme fatigue is not unexpected or out of the ordinary. As hard as it is to imagine, he's still got a very lengthy healing process ahead.
We received CT results Friday before we left which showed "no abscess or infection in the chest, pelvis or abdomen. And no abdominal abscess, inflammation, kinking or blockage" All good news. (Another blood workup was done before we left town and white blood count had considerably decreased, now at a slightly elevated level of 11,000) .
Reflux and regurgitation comes and goes. Extreme fatigue goes without saying. For instance, after going to church, he has to come home and take a 2 hour (or more) nap. I also know he doesn't interact with others because it requires so much expended energy it's exhausting. If you notice, his entire posture looks very stiff (especially the way he holds his hands at an odd angle) which is caused by muscle fatigue and tightness. And he often struggles with difficulty sleeping at night.
He did pretty well on our Christmas vacation; some sinking spells and a few puking episodes but overall it was a good trip. It was great for him to be surrounded by his family. And of course there was plenty of family there! As well as lots of great food to try to fatten him up a little! Only one afternoon did things get really bad and he had to give in to a few hours in bed and a little bit of a pity party, but who can blame the guy???
Ron has spent today sleeping off and on; I'm trying to cut him some slack and have only forced him out for one walk and a short trip to the grocery store. But tomorrow, I'm hoping to start whipping him back into shape! (At least get him back into a more consistent sleeping, eating and physical therapy schedule).
Keep praying....God hears and answers!
Thursday, December 25, 2008
Merry Christmas from Hyatt Lost Pines Resort!
It's our year to do a big Nordell Christmas and Mom & Dad Nordell are graciously treating the group to a 5 day stay at the beautiful Hyatt Lost Pines Resort, down outside of Austin. It's been so good to get away and enjoy time with family in a relaxing setting. We've made s'mores around the campfire while listening to singing cowboys; drove in to Austin for the Trail of Lights in Zilker Park with Ron in wheelchair, bundled up with blankets, taken walks around the grounds and the girls have enjoyed the fitness facility, hot tubs and even the pool--the outdoor pool is heated to 85 and it's great!
And yes, way before leaving we received instructions from Dr. A where to go in case any problems arise. He even has friends on staff at the hospital down in Austin he will contact if needed. How blessed we are to have such caring, proactive doctors!
Only problem we've had thus far has been totally my fault (although completely accidental!)....we convinced Ron to join us for horseshoes and be my partner (bad idea to begin with...I'm awful at horseshoes!). At one point he was watching the game in the pit next to us, one of my wonderful throws took a bad bounce, hit his calf--gouging his leg making it bleed quite a bit and putting a huge goose egg on it! I felt awful!!! Being the trooper he is, he played through the pain and says it's ok today.
After gifts with our small family, and a plethora of stocking stuffers with all 19 Nordell's in attendance; we enjoyed a huge Christmas feast and then we all headed to the golf course to ride along with those who were playing. It was glorious to see Ron back in his element, although it was bittersweet for him. He enjoyed it tremendously, but it also made him miss it even more. He did try swinging a club on the driving range and managed to shank a few before giving out. The smile on his face as he swung the club was priceless! He also drove the golf cart (first driving of any kind in almost 15 months) around a portion of the course.
I'll try to get pictures up soon!
Christmas blessings to you and yours!
Christie
And yes, way before leaving we received instructions from Dr. A where to go in case any problems arise. He even has friends on staff at the hospital down in Austin he will contact if needed. How blessed we are to have such caring, proactive doctors!
Only problem we've had thus far has been totally my fault (although completely accidental!)....we convinced Ron to join us for horseshoes and be my partner (bad idea to begin with...I'm awful at horseshoes!). At one point he was watching the game in the pit next to us, one of my wonderful throws took a bad bounce, hit his calf--gouging his leg making it bleed quite a bit and putting a huge goose egg on it! I felt awful!!! Being the trooper he is, he played through the pain and says it's ok today.
After gifts with our small family, and a plethora of stocking stuffers with all 19 Nordell's in attendance; we enjoyed a huge Christmas feast and then we all headed to the golf course to ride along with those who were playing. It was glorious to see Ron back in his element, although it was bittersweet for him. He enjoyed it tremendously, but it also made him miss it even more. He did try swinging a club on the driving range and managed to shank a few before giving out. The smile on his face as he swung the club was priceless! He also drove the golf cart (first driving of any kind in almost 15 months) around a portion of the course.
I'll try to get pictures up soon!
Christmas blessings to you and yours!
Christie
Thursday, December 11, 2008
The Warrior is a Child
Thanks for your comments and words of encouragement! Please know we are not walking around constantly down and depressed. Yes, it's difficult and we have times we feel we want to throw in the towel, but we also know we have a Mighty God we can always rely on, not just when the battle gets to be overwhelming. He is with us ALWAYS....in reality, this battle belongs to Him! And we are blessed by you, our ever-faithful prayer warriors!
Music has a way of stirring my soul and this song has been playing in my heart and mind for months now...one of our anthems of sorts.
Warrior is a Child
Twila Paris
Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears
(Chorus)
They don't know
that I go running home when I fall down
They don't know
who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armour
The warrior is a child
Unafraid because his armour is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet
They don't know
that I go running home when I fall down
They don't know
who picks me up when no one is around
I drop my sword and look up for His smile
Because deep inside this armour
Deep inside this armour
Deep inside this armour
The Warrior is a Child
(I pray it is evident to everyone we come in contact with Who we go running home to!!)
Much love!
Christie
Music has a way of stirring my soul and this song has been playing in my heart and mind for months now...one of our anthems of sorts.
Warrior is a Child
Twila Paris
Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears
(Chorus)
They don't know
that I go running home when I fall down
They don't know
who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armour
The warrior is a child
Unafraid because his armour is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet
They don't know
that I go running home when I fall down
They don't know
who picks me up when no one is around
I drop my sword and look up for His smile
Because deep inside this armour
Deep inside this armour
Deep inside this armour
The Warrior is a Child
(I pray it is evident to everyone we come in contact with Who we go running home to!!)
Much love!
Christie
Wednesday, December 10, 2008
Been a while...
...what can I say??? It's hard to keep reporting the same things over and over.
First off, one year ago today Ron had another emergency surgery. I remember so clearly being in Ron's room as they were preparing to rush him back down to ICU (still at HEB at this point) because he was having another crash. The tube feed was causing stool to leak into his abdominal cavity which once again caused sepsis. And on top of this, his blood sugar had gotten dangerously low so they were injecting glucose as he was being wheeled to ICU. Pastor Tommy and Danny had just arrived and we asked everyone to stop long enough for us to pray over Ron. Afterwards, one of the nurses' said "we are born again believers, too"! What a sweet encouragement, to have his caregiver's join us in this way.
Dr. E had to clean out his abdominal cavity and in the process also found a very large hematoma in his chest cavity. This chain of events confirmed it would be in Ron's best interest to transfer to Presbyterian, which took place 4 days later.
Now, to catch you up on the last 10 days:
For those of you who talk to my husband, let me tell you (and I say this with the utmost love and respect)...he's trying to be politically correct! (My politically correct way of saying he's a liar!) If you ask him how he's feeling, he'll tell you what you want to hear: "I'm good" "doing well" "getting better", etc. If you want to know the real scoop, ask me!
Reality:
Ron continues to experience extreme fatigue and has been having difficulty sleeping again which doesn't help matters--makes his muscles feel like rubber bands, and keeps his brain in a fog, along with a multitude of other side effects. Last week, sleeping problems were caused by belly being very tight, therefore, he couldn't get comfortable so waking sporadically and then took a while to go back to sleep. Belly tightness had gotten better, but last week he had a very hard sneeze that "felt like it pulled something". Had excruciating pain for about 24 hours, even back to taking hydrocodone for a couple of days (obviously, we had to discontinue PT.)
To me, he seems to have gone backwards. He had been V-E-R-Y S-L-O-W-L-Y progressing but since his last hospital stay in October, he's just never seemed to get back to where he was...then, of course, the wedding was hard on him, as well as Thanksgiving festivities.
Reflux had been somewhat better, but in the last week has gotten really bad again; bringing with it, more regurgitation. And even though his appetite has increased , his weight has not; he has actually lost 4 more pounds, Honestly, I've been a little concerned.
We had an appointment with Dr. A today and he is very concerned with the weight issue in particular; and other issues as well. Therefore, we are adjusting some of his meds. Dr. A wants to once again start the process of slowly decreasing steroid, so I'm on the alert for increased weakness & puny-ness these next few days.
AND, if things don't improve and he doesn't start gaining weight, he'll have to be put back on TPN. Not something any of us (including Dr. A) wants but he cannot continue to go backwards.
Dr. A also thinks he may have thrush in his esophagus, which could be causing the increased reflux, so he's back on the Nystatin (that lovely swish and swallow) for the next 3 days...if it is Thrush, we should see a difference in this amount of time. He also said it's a good thing Ron wasn't still on Lovenox (blood thinner) or the hard sneeze would have caused another huge hematoma. And, now that the pain has gotten better, he wants Ron to start back on physical therapy. He is also increasing antidepressant and wants him sipping on nutritional drinks throughout the day so that he's getting a trickle of protein and other nutrients between regular meals.
Please pray that the combination of all of these changes will help him regain strength, stamina, energy, weight, etc.
And pray that we will stand firm....I must confess this last week has been hard, physically & emotionally--we're at a difficult place; seemingly stagnant and at times even feels we're regressing. It makes me so sad...I just want my husband back! I miss his interaction (with me and others), his enthusiasm for life and mostly his joyful spirit. Some days we are so weary of this battle.
This is our prayer:
"We try to live in such a way that no one will be hindered from finding the Lord by the way we act...In everything we do we try to show that we are true ministers of God. We (try to) patiently endure troubles and hardships and calamaties of every kind...Our hearts ache, but we (strive to) always have joy. We are poor, but we give spiritual riches to others. We own nothing and yet we have everything." 2 Corinthians 6:3, 4 & 10 NLT (emphasis mine)
Much love to you and yours!
First off, one year ago today Ron had another emergency surgery. I remember so clearly being in Ron's room as they were preparing to rush him back down to ICU (still at HEB at this point) because he was having another crash. The tube feed was causing stool to leak into his abdominal cavity which once again caused sepsis. And on top of this, his blood sugar had gotten dangerously low so they were injecting glucose as he was being wheeled to ICU. Pastor Tommy and Danny had just arrived and we asked everyone to stop long enough for us to pray over Ron. Afterwards, one of the nurses' said "we are born again believers, too"! What a sweet encouragement, to have his caregiver's join us in this way.
Dr. E had to clean out his abdominal cavity and in the process also found a very large hematoma in his chest cavity. This chain of events confirmed it would be in Ron's best interest to transfer to Presbyterian, which took place 4 days later.
Now, to catch you up on the last 10 days:
For those of you who talk to my husband, let me tell you (and I say this with the utmost love and respect)...he's trying to be politically correct! (My politically correct way of saying he's a liar!) If you ask him how he's feeling, he'll tell you what you want to hear: "I'm good" "doing well" "getting better", etc. If you want to know the real scoop, ask me!
Reality:
Ron continues to experience extreme fatigue and has been having difficulty sleeping again which doesn't help matters--makes his muscles feel like rubber bands, and keeps his brain in a fog, along with a multitude of other side effects. Last week, sleeping problems were caused by belly being very tight, therefore, he couldn't get comfortable so waking sporadically and then took a while to go back to sleep. Belly tightness had gotten better, but last week he had a very hard sneeze that "felt like it pulled something". Had excruciating pain for about 24 hours, even back to taking hydrocodone for a couple of days (obviously, we had to discontinue PT.)
To me, he seems to have gone backwards. He had been V-E-R-Y S-L-O-W-L-Y progressing but since his last hospital stay in October, he's just never seemed to get back to where he was...then, of course, the wedding was hard on him, as well as Thanksgiving festivities.
Reflux had been somewhat better, but in the last week has gotten really bad again; bringing with it, more regurgitation. And even though his appetite has increased , his weight has not; he has actually lost 4 more pounds, Honestly, I've been a little concerned.
We had an appointment with Dr. A today and he is very concerned with the weight issue in particular; and other issues as well. Therefore, we are adjusting some of his meds. Dr. A wants to once again start the process of slowly decreasing steroid, so I'm on the alert for increased weakness & puny-ness these next few days.
AND, if things don't improve and he doesn't start gaining weight, he'll have to be put back on TPN. Not something any of us (including Dr. A) wants but he cannot continue to go backwards.
Dr. A also thinks he may have thrush in his esophagus, which could be causing the increased reflux, so he's back on the Nystatin (that lovely swish and swallow) for the next 3 days...if it is Thrush, we should see a difference in this amount of time. He also said it's a good thing Ron wasn't still on Lovenox (blood thinner) or the hard sneeze would have caused another huge hematoma. And, now that the pain has gotten better, he wants Ron to start back on physical therapy. He is also increasing antidepressant and wants him sipping on nutritional drinks throughout the day so that he's getting a trickle of protein and other nutrients between regular meals.
Please pray that the combination of all of these changes will help him regain strength, stamina, energy, weight, etc.
And pray that we will stand firm....I must confess this last week has been hard, physically & emotionally--we're at a difficult place; seemingly stagnant and at times even feels we're regressing. It makes me so sad...I just want my husband back! I miss his interaction (with me and others), his enthusiasm for life and mostly his joyful spirit. Some days we are so weary of this battle.
This is our prayer:
"We try to live in such a way that no one will be hindered from finding the Lord by the way we act...In everything we do we try to show that we are true ministers of God. We (try to) patiently endure troubles and hardships and calamaties of every kind...Our hearts ache, but we (strive to) always have joy. We are poor, but we give spiritual riches to others. We own nothing and yet we have everything." 2 Corinthians 6:3, 4 & 10 NLT (emphasis mine)
Much love to you and yours!
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