It's been a busy, busy week with rounds two and three of our Spring Break Presby-palooza on Monday and Wednesday respectively.
Monday's study revealed Ron's duodenum (first section of intestine just past stomach) collapses into itself when he's lying flat on his back, keeping things from passing from the stomach into his intestines. It will then periodically "burst open" releasing everything. Thus, one of the reasons insertion of j-tube was unsuccessful Friday. This is also a HUGE contributor to his nightly reflux.
Dr. D also said study showed he still had quite a bit of dye in his system from Friday's procedure and encouraged him to drink alot of water over the next couple of days to help flush out. Unfortunately, Wednesday's procedure also involved introducing more dye.
The high amounts of dye he was subjected to over a five day period really did a number on his system, thereby causing a need to stay close to home the remainder of the week; while also heightening the possibility of dehydration. Hopefully, by Monday it should all be behind him (sorry, just couldn't help myself!)
Wednesday's procedure was a success! Dr. D was confident it would go smoothly after having had a bird's eye view of how his digestive system works and said it would take 20-30 minutes...at most an hour. I was getting a little concerned once we reached the 2 hour mark and he was still in; then again, I should have expected it with my unique guy. . The j-tube insertion from stomach to duodenum did go smoothly; weaving his way through the rest of the duodenum and jejunum to get past the functionally blocked section was quite a challenge, since his does not take the normal path. The longest j-tube they have was b-a-r-e-l-y long enough to reach the area needed.
Recovery was a breeze, since he was awake throughout the entire procedure, and we were home by early afternoon. We're hoping for another added benefit - now that the j-tube is in place, it should help to keep the duodenum open (as opposed to collapsing into itself when he's sleeping), thus keeping the reflux at bay.
What now?
He is to inject 12 oz of water 3 times a day via j-tube for the next week to see how his body intestines tolerate. He is also to keep oral intake of food to a minimum since the j-tube is threaded through the g-tube (a tube within a tube); the g-tube will be more likely to clog thereby causing yakking. So far things are going ok. The tube feed (water) causes some cramping; he's had a couple of yakking episodes and one episode of tubing coming apart (that was a lovely mess to start St. Patrick's Day...what a way to go green!)
We are so very thankful both of these procedures were able to be performed as outpatient. Nothing beats sleeping in your own bed at night; and napping in your own recliner during the day!
We kept things pretty low-key the rest of the week, with the highlight of Spring Break being keeping our girls while both mommy and daddy worked Friday.
One of my favorite things I look forward to over Spring Break is planting flowers. With everything else going on, as well as finances being as they are, I didn't think I'd have the opportunity. However, we were blessed with an unexpected financial gift by some sweet friends which allowed us to pick up some flowers, potting soil and mulch today. I've been one dirty, sweaty, happy camper as I've pulled out the old, dead stuff and planted beautiful, blooming hibiscus, Mexican heather, alyssum and a few others. Tomorrow afternoon, I plan to weed my rose bed and spread mulch, yippee!!!
There's just something therapeutic about working in the soil. As we were making our selections; I was thinking how many analogies there are in the Bible making comparisons of our lives/hearts to plants/planting/soil:
"I am the true vine, and my Father is the gardener. He cuts off every branch in Me that bears no fruit; while very branch that does bear fruit He prunes so that it will be even more fruitful." John 15:1
"I am the vine, you are the branches. If a man remains in Me and I in him he will bear much fruit; apart from Me you can do nothing." John 15:5
The parable of the four soils: Luke 8:5-15 (selected):
"A farmer went out to sow his seeds. (The seed is the word of God) As he was scattering the seed, some fell along the path (the ones who hear and then the devil comes and takes away the word from their hearts, so that they may not believe and be saved)....Some fell on rock (those who receive the word with joy when they hear it, but they have no root...in the time of testing they fall away). Other seed fell among thorns (those who hear, but as they go on their way they are choked by life's worries, riches and pleasures, and they do not mature. Still other seed fell on good soil (those...who hear the word, retain it, and by persevering produce a crop).
John 12:24
"I tell you the truth, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds. The man who loves his life will lose it, while the man who hates his life in this world will keep it for eternal life."
1 Peter 1:23-24
"You have been born again, not of perishable seed, but of imperishable, through the living and enduring word of God. For, all men are like grass and all their glory is like the flowers of the field; the grass withers and the flowers fall, but the word of the Lord stands forever"
Thank you, Father, for speaking in ways that I may understand, and retain (some of the time!).
Happy Spring!
Christie
Sunday, March 20, 2011
Sunday, March 13, 2011
Going Deeper
Thanks everyone for your sweet words of encouragement and care!
Ron was in quite a bit of pain for the first 24 hours, but is doing much better today and actually felt up to eating a little.
I know my last email caused some concern, but I want to assure you we are doing well emotionally and spiritually; evidence you've been praying and God has been answering!
We'll be off again bright and early to Presbyterian for swallow study tomorrow. Please pray things go smoothly and it provides definitive direction.
You are much appreciated and loved!
Christie
God may allow our hearts to be broken so He can get deeper into them.
"For though He wounds, He binds and heals again. He will deliver you again and again, so that no evil can touch you." Job 5:18 & 19 The Living Bible
Ron was in quite a bit of pain for the first 24 hours, but is doing much better today and actually felt up to eating a little.
I know my last email caused some concern, but I want to assure you we are doing well emotionally and spiritually; evidence you've been praying and God has been answering!
We'll be off again bright and early to Presbyterian for swallow study tomorrow. Please pray things go smoothly and it provides definitive direction.
You are much appreciated and loved!
Christie
God may allow our hearts to be broken so He can get deeper into them.
"For though He wounds, He binds and heals again. He will deliver you again and again, so that no evil can touch you." Job 5:18 & 19 The Living Bible
Saturday, March 12, 2011
I Still Believe
Friday proved to be a l-o-n-g day at Presby. We had to arrive by 8, however procedure didn't get started until 11:30. Dr. D said it would take about 2 hours to replace the PICC, super-size the G-tube and get J-tube inserted and threaded down to optimal area of intestines.
2 hours passed; then 3 and then 4...and I'm trolling the vending machines for some powdered-sugar donuts; my go to food when I'm feeling anxious at Presby. Fortunately/unfortunately, there were none to be found.
Finally, I'm told he's finished and has been taken to recovery. A few minutes later Dr. D comes out to talk with me. He was disappointed to report that he was unable to place the J-tube. He was able to get it into the stomach, however when trying to thread j-tube out of stomach, down the intestines, he kept running into dead ends. He finally gave up at the 4 hour mark.
Ron spent a little time in recovery and was then sent back up to his room in the outpatient unit with plans to be discharged; which he was after a couple of hours of observation, instructions for nothing by mouth for the next 24 hours and a lollipop for the ride home (love those lolli's!).
So, what now?
It's well known that my hubby's anatomy is quite unique due to the numerous surgeries, procedures and complications he's experienced. His intestines are not in the same position as most of us; nor does it follow the normal back and forth loopy pattern. He has many sharp turns and angles, add in all the tethering and it becomes a twisty, turny roller coaster. Dr. D feels when Ron is lying flat on his back his intestines lay over on themselves; which would contribute to the severe reflux he experiences.
Plan is to do a swallow study on Monday morning (at Presby, of course). This will give them a better idea of the path to take. They will then try again to insert the j-tube on Wednesday.
It was a very quiet car ride home. We were both disappointed, discouraged and felt totally beaten down. And, I confess, I wanted to stomp my feet, throw a little hissy fit and scream "REALLY, God? Can't we catch one little break????"
I want to be able to pray "Your will be done" and mean it; but there are times when we just want things to be less complicated and go according to the plans we've made.
But, God....
I could stop right there; that's all I should need to remember...but, God!
Now there's nothing wrong with wanting something; praying for something to go a certain way. Jesus didn't necessarily want to wait so long to go to His friend, Lazarus, before He died. And Lazarus's sisters prayed for God to heal their brother. But God had a different plan in mind. One that went far beyond healing Lazarus's sickness. (John 11:1-45) The key is whether we are willing to give up what we want and submit to His plan. To be able to pray "Your will be done" and really mean it!
No, He doesn't work according to what I want. But, He always works according to His eternal plan. And that plan, my friend, is P-E-R-F-E-C-T!
Please continue to keep my sweet guy in your prayers.
Much love,
Christie
As we were traveling home, this song came on and I felt it really spoke to our hearts. Yes,
believing is a choice.
Enjoy video link below.
I Still Believe - Jeremy Camp
http://www.youtube.com/watch?v=R4qPceadBMU
Scattered words and empty thoughts
seem to pour from my heart
I've never felt so torn before
seems I don't know where to start
but it's now that I feel Your grace falls like rain
from every fingertip, washing away my pain
'Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe
Though the questions still fog up my mind
with promises I still seem to bear
even when answers slowly unwind
it's my heart I see You prepare
but its now that I feel Your grace fall like rain
from every finger tip, washing away my pain
Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe
The only place I can go is into your arms
where I throw to you my feeble prayers
in brokenness I can see that this was your will for me
Help me to know You are near
'Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe
'Cause I still believe
Well I still believe
I still believe
I still believe
2 hours passed; then 3 and then 4...and I'm trolling the vending machines for some powdered-sugar donuts; my go to food when I'm feeling anxious at Presby. Fortunately/unfortunately, there were none to be found.
Finally, I'm told he's finished and has been taken to recovery. A few minutes later Dr. D comes out to talk with me. He was disappointed to report that he was unable to place the J-tube. He was able to get it into the stomach, however when trying to thread j-tube out of stomach, down the intestines, he kept running into dead ends. He finally gave up at the 4 hour mark.
Ron spent a little time in recovery and was then sent back up to his room in the outpatient unit with plans to be discharged; which he was after a couple of hours of observation, instructions for nothing by mouth for the next 24 hours and a lollipop for the ride home (love those lolli's!).
So, what now?
It's well known that my hubby's anatomy is quite unique due to the numerous surgeries, procedures and complications he's experienced. His intestines are not in the same position as most of us; nor does it follow the normal back and forth loopy pattern. He has many sharp turns and angles, add in all the tethering and it becomes a twisty, turny roller coaster. Dr. D feels when Ron is lying flat on his back his intestines lay over on themselves; which would contribute to the severe reflux he experiences.
Plan is to do a swallow study on Monday morning (at Presby, of course). This will give them a better idea of the path to take. They will then try again to insert the j-tube on Wednesday.
It was a very quiet car ride home. We were both disappointed, discouraged and felt totally beaten down. And, I confess, I wanted to stomp my feet, throw a little hissy fit and scream "REALLY, God? Can't we catch one little break????"
I want to be able to pray "Your will be done" and mean it; but there are times when we just want things to be less complicated and go according to the plans we've made.
But, God....
I could stop right there; that's all I should need to remember...but, God!
Now there's nothing wrong with wanting something; praying for something to go a certain way. Jesus didn't necessarily want to wait so long to go to His friend, Lazarus, before He died. And Lazarus's sisters prayed for God to heal their brother. But God had a different plan in mind. One that went far beyond healing Lazarus's sickness. (John 11:1-45) The key is whether we are willing to give up what we want and submit to His plan. To be able to pray "Your will be done" and really mean it!
No, He doesn't work according to what I want. But, He always works according to His eternal plan. And that plan, my friend, is P-E-R-F-E-C-T!
Please continue to keep my sweet guy in your prayers.
Much love,
Christie
As we were traveling home, this song came on and I felt it really spoke to our hearts. Yes,
believing is a choice.
Enjoy video link below.
I Still Believe - Jeremy Camp
http://www.youtube.com/watch?v=R4qPceadBMU
Scattered words and empty thoughts
seem to pour from my heart
I've never felt so torn before
seems I don't know where to start
but it's now that I feel Your grace falls like rain
from every fingertip, washing away my pain
'Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe
Though the questions still fog up my mind
with promises I still seem to bear
even when answers slowly unwind
it's my heart I see You prepare
but its now that I feel Your grace fall like rain
from every finger tip, washing away my pain
Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe
The only place I can go is into your arms
where I throw to you my feeble prayers
in brokenness I can see that this was your will for me
Help me to know You are near
'Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe
'Cause I still believe
Well I still believe
I still believe
I still believe
Thursday, March 10, 2011
Spring Break...Let the Fun Begin!!!
Ahhhhh....! I'm actually getting a head start on Spring Break by taking off tomorrow. Though it might make you jealous, I couldn't wait to share where I'm spending SB '11. Bright and early tomorrow morning, my sweetheart and I are headed out to ....Presbyterian!!!! Woohoo!!! What better way to spend a school break than with our friends at Presby??
Ron will have several procedures performed tomorrow and I'm so thankful I won't have to worry about missing any work next week as I tend to my guy.
Although the G-tube has been successful in keeping him from yakking, he's still unable to eat much without the tube getting clogged, so Dr. D will place a new, larger g-tube in the same location in hopes of alleviating this issue.
Dr. D willl also insert a new PICC line. Ron is having problems with his current PICC line -- one of the lines will not flush and the other has become very difficult to flush as well..not a good thing when your nutrition is dependent on IV access.
And last, but not least, he will be getting a J-tube (J- jejunal - which refers to a specific portion of your intestines). They will actually place a double lumen at the g-tube site. One of the tubes will be to drain the stomach; the other tube will be threaded down his intestines in order to give direct feeds. The intestines only receive nourishment from that which directly passes through them, unlike the rest of the body which can receive nourishment through artificial IV nutrition (TPN).
The goal is to get the bowel fed directly by placing the J-tube and hooking up liquid feeds directly to the intestines in order to get it "beefed up". Hopefully, as the lower portion gets "exercised" by this type of feeding, and that area becomes healthy, it will have a ripple effect with the upper portion of the intestines eventually getting healthier, as well.
Ron has a large section of bowel that is "functionally" blocked. It is not physically blocked, however, due to all the scar tissue, as well as nerve damage in that area, it acts as if there is a physical blockage. Dr. D will attempt to thread the J-tube down past this area to have the greatest chance of success.
He will continue to be hooked up to TPN at night and now add in the J-tube feed. He also has the option to take in food orally but is not dependent on oral foods being absorbed.
We are so very thankful for Dr. D, Dr. A and Dr. S. Their tenacity and persistance knows no bounds. They are always researching ways to get Ron healthier in order to ensure the best quality of life possible.
Enjoy your Spring Break. If we come to mind; please say a prayer on our behalf!
Much love,
Christie
"When you pass through the waters...they will not sweep over you." Isaiah 43:2
God does not open paths for us before we come to them, or provide help before help is needed. Yet when we are at our point of need, God's hand is outstretched.
J.R.M (not sure who this is, but love the quote!) Streams in the Desert
Ron will have several procedures performed tomorrow and I'm so thankful I won't have to worry about missing any work next week as I tend to my guy.
Although the G-tube has been successful in keeping him from yakking, he's still unable to eat much without the tube getting clogged, so Dr. D will place a new, larger g-tube in the same location in hopes of alleviating this issue.
Dr. D willl also insert a new PICC line. Ron is having problems with his current PICC line -- one of the lines will not flush and the other has become very difficult to flush as well..not a good thing when your nutrition is dependent on IV access.
And last, but not least, he will be getting a J-tube (J- jejunal - which refers to a specific portion of your intestines). They will actually place a double lumen at the g-tube site. One of the tubes will be to drain the stomach; the other tube will be threaded down his intestines in order to give direct feeds. The intestines only receive nourishment from that which directly passes through them, unlike the rest of the body which can receive nourishment through artificial IV nutrition (TPN).
The goal is to get the bowel fed directly by placing the J-tube and hooking up liquid feeds directly to the intestines in order to get it "beefed up". Hopefully, as the lower portion gets "exercised" by this type of feeding, and that area becomes healthy, it will have a ripple effect with the upper portion of the intestines eventually getting healthier, as well.
Ron has a large section of bowel that is "functionally" blocked. It is not physically blocked, however, due to all the scar tissue, as well as nerve damage in that area, it acts as if there is a physical blockage. Dr. D will attempt to thread the J-tube down past this area to have the greatest chance of success.
He will continue to be hooked up to TPN at night and now add in the J-tube feed. He also has the option to take in food orally but is not dependent on oral foods being absorbed.
We are so very thankful for Dr. D, Dr. A and Dr. S. Their tenacity and persistance knows no bounds. They are always researching ways to get Ron healthier in order to ensure the best quality of life possible.
Enjoy your Spring Break. If we come to mind; please say a prayer on our behalf!
Much love,
Christie
"When you pass through the waters...they will not sweep over you." Isaiah 43:2
God does not open paths for us before we come to them, or provide help before help is needed. Yet when we are at our point of need, God's hand is outstretched.
J.R.M (not sure who this is, but love the quote!) Streams in the Desert
Sunday, February 27, 2011
Your Will Be Done
We get so wrapped up in what's going on in the ups and downs of our own life that sometimes it seems we need a kick in the pants to to get our focus back where it belongs.
Though we don't make it to church often, we are always so blessed when we do. This morning's sermon "The Most Difficult Prayer We Will Ever Pray" really spoke to both of us..
Matthew 6:9-13 is commonly referred to as "The Lord's Prayer". Luke 11 references this passage as well and also records that the disciples wanted Jesus to teach them to pray just as John the Baptist taught his disciples to pray. Jesus responded, "This, then, is how you should pray:"
"Our Father in heaven,
Hallowed be Your name.
Your Kingdom come,
Your will be done,
On earth as it is in heaven
Give us today our daily bread.
And forgive us our debts,
As we also have forgiven our debtors.
And lead us not into temptation,
But deliver us from the evil one.
For Yours is the kingdom,
And the power and the glory forever.
Amen."
(New International Version)
The main focus of PT's sermon was in verse 10 "Your will be done". If we truly mean it when we pray "Your will be done" we're committing to take our hands off and allow Him to have free reign. The key is giving up control!
Ouch!! Anyone else feel their toes just got trampled all over?
That "c" word ranks right up there with the all too familiar "p" word (pride). In reality, control is only an illusion; and pride...well, you know the Proverb "pride goes before destruction". The crux of the matter is, Satan tries to fool us into thinking we know best, and then we begin to believe the lie that what we want is better than what God wants for us.
Many (most?) of our prayers are based around a desire for God to change our circumstances to our liking. "You know, God, I've got this handled. Everything's all lined out, ready to fall into place. If you would just take care of this one little circumstance and bless this plan, I'll take it from there". However, God's more interested in changing our hearts.....the way we relate to our circumstances; not necessarily changing the cirsumstance itself.
This kind of prayer demands total dependence and absolute trust! Yet, when we choose His path, we can pray "Your will be done" without reservation! The truth is, when we have an abiding, intimate relationship with God, He will change our desires to be in line with His desires for us.
It's not about us--what we want--it's about following His will and giving Him glory. Not always an easy task. Jesus knew this first hand; He faced tremendous pain and suffering in His obedience. He was confident in His commitment to do whatever was His Father's will!
In John 6:38 Jesus said: "For I have come down from heaven to do the will of God who sent me, not to do what I want."
Yes, God's will is sometimes hard to understand. It can be costly and often brings pain and suffering...but are you willing to consider the cost of living outside of His will?
"How can we understand the road we travel? It is the Lord who directs our steps." Proverbs 20:24
Thanks, PT! Needed the reminder that it's not about our circumstances being changed (tho we'd really like that!) but all about allowing Him to mold our hearts through the circumstances.
Though we don't make it to church often, we are always so blessed when we do. This morning's sermon "The Most Difficult Prayer We Will Ever Pray" really spoke to both of us..
Matthew 6:9-13 is commonly referred to as "The Lord's Prayer". Luke 11 references this passage as well and also records that the disciples wanted Jesus to teach them to pray just as John the Baptist taught his disciples to pray. Jesus responded, "This, then, is how you should pray:"
"Our Father in heaven,
Hallowed be Your name.
Your Kingdom come,
Your will be done,
On earth as it is in heaven
Give us today our daily bread.
And forgive us our debts,
As we also have forgiven our debtors.
And lead us not into temptation,
But deliver us from the evil one.
For Yours is the kingdom,
And the power and the glory forever.
Amen."
(New International Version)
The main focus of PT's sermon was in verse 10 "Your will be done". If we truly mean it when we pray "Your will be done" we're committing to take our hands off and allow Him to have free reign. The key is giving up control!
Ouch!! Anyone else feel their toes just got trampled all over?
That "c" word ranks right up there with the all too familiar "p" word (pride). In reality, control is only an illusion; and pride...well, you know the Proverb "pride goes before destruction". The crux of the matter is, Satan tries to fool us into thinking we know best, and then we begin to believe the lie that what we want is better than what God wants for us.
Many (most?) of our prayers are based around a desire for God to change our circumstances to our liking. "You know, God, I've got this handled. Everything's all lined out, ready to fall into place. If you would just take care of this one little circumstance and bless this plan, I'll take it from there". However, God's more interested in changing our hearts.....the way we relate to our circumstances; not necessarily changing the cirsumstance itself.
This kind of prayer demands total dependence and absolute trust! Yet, when we choose His path, we can pray "Your will be done" without reservation! The truth is, when we have an abiding, intimate relationship with God, He will change our desires to be in line with His desires for us.
It's not about us--what we want--it's about following His will and giving Him glory. Not always an easy task. Jesus knew this first hand; He faced tremendous pain and suffering in His obedience. He was confident in His commitment to do whatever was His Father's will!
In John 6:38 Jesus said: "For I have come down from heaven to do the will of God who sent me, not to do what I want."
Yes, God's will is sometimes hard to understand. It can be costly and often brings pain and suffering...but are you willing to consider the cost of living outside of His will?
"How can we understand the road we travel? It is the Lord who directs our steps." Proverbs 20:24
Thanks, PT! Needed the reminder that it's not about our circumstances being changed (tho we'd really like that!) but all about allowing Him to mold our hearts through the circumstances.
Thursday, February 10, 2011
February musings
We've been home from our last little stay at Presby for two weeks now and it's certainly been busy. I'm so thankful God blessed us with an extended break due to last week's winter weather and another unexpected day off Wednesday....the downtime has been much needed!
You'd think with all this extra time off; I'd do something productive; but to be honest...despite being off of work 4 days last week, and 1 this week; I'm still behind in my reading of my one-year chronological Bible and it's taken me two weeks to catch everyone up on what's going on around here.
However, we did spend a glorious weekend playing with our precious girls...who, by the way, are both now walking! That sweet little Frankenstein walk...both arms out, slow, stiff-legged, hilarious! They "talk", giggle and play together and also enjoy reading books, and have begun to imitate animal sounds as well as kisses. But my favorite is to see how they seem to truly love each other and can be so sweet to one another. I may be a little biased, but they are just the cutest baby girls!!! Most definitely double the blessing!
Sorry, got off on a rabbit trail; on to the news you really want to know:
We knew this latest procedure would not be a cure-all, but Ron was quite disappointed to wake up yakking the first morning home. However, I fear I'm to blame. Being the fabulous wife I am, (wink, wink), I decided to prepare a healthy, nutritious meal of salmon, pasta, steamed veggies , fresh cherries, and as an added treat, I stopped by Sprinkles to pick up his favorite--German Chocolate cupcake. Seems we were both so excited about this step forward, we forgot the first cardinal rule of someone with digestive issues...stick to easily digestible foods! No seeds, nuts, skins; etc. We found out the hard way that the g-tube is easily clogged, which, you guessed it, forces everything to come back up!
So, we've had to make several adjustments in eating habits. It's been a struggle but I'm happy to report, he has only yakked one other time...which had nothing to do with the g-tube/digestive issues!
We did have to make a little trip to Presby over the weekend...drain bag busted...quite a joy to wake up to...and since they had to construct apparatus specific to his unique needs; we had to make a trip in so they could reconstruct another. We were keeping the girls for the weekend so they were along for the ride. As soon as we entered the hospital we had to get a picture of them. You know you've been around a hospital too long when the first thing you do is take a picture to commemorate your grandbabies first trip there!
Sunday afternoon, Ron suddenly felt he'd been hit by a truck...more lethargic than usual, no appetite, stiff neck, body aches, joint pains and a monster headache. Anytime something comes on that suddenly, everyone worries that it might be an infection in his PICC; and being that it goes directly to his heart, well, you get the picture.
By Monday afternoon, he was running a fever. Per Dr. A's orders, off we went to have bloodwork and cultures run. Temp continued to climb all day so decision was made to go to the after-hours clinic for a full assessment. After being poked, prodded and having that nasty flu swab done, along with a sudden, random yakking episode; praise God, he tested negative for the flu. Clinic doctor said it looked to be a virus that should run it's course within about 5 days, however he would feel worse before he felt better...yippee! True to course, that night was a rough one with temp getting up to 102.3.
We found out Wednesday morning that the lab lost his blood vials and needed him to go back for another set of blood draws and cultures. Yes, this was the day schools were closed due to ice, snow and cold. We waited until afternoon when the roads had cleared up before we ventured out.
It's so good to see him finally feeling better - no fever in over 24 hours, good sleep the last couple of nights and he finally feels like eating a little.
I think I've covered just about everything now...hope you feel in the loop!
Much love,
Christie
Though I'm behind in my readings, God continues to speak to me in many ways. Exodus 10:2 (NLT) has been a sweet reminder of God's perfect plan regardless of what we're going through.
"You will be able to tell wonderful stories to your children and grandchildren about the marvelous things I am doing...to prove that I am the Lord"
along with Job 26:14 NLT
"These are just the beginning of all that He does, merely a whisper of His power"
When life gets complicated and you've dealt with difficult circumstances for an extended period of time you can easily feel abandoned. I'm so thankful we can rest in KNOWING God has promised to NEVER leave or forsake us! Even when we hurt so badly our disappointments cause us to doubt His plan and we turn from Him, He is ALWAYS there...loving us, washing us with His peace and grace. However, we have to CHOOSE to trust, CHOOSE to believe, CHOOSE to praise, CHOOSE to follow Him...no matter where the path takes us.
This great song by Heather Williams says it so well:
Hallelujah
http://www.youtube.com/watch?v=Ufof-XgwhOs
Jesus, please come
please come today
hear me
heal me
be near me I pray
I have fallen so far
flat on my face
I'm in need of your grace today
I stumble and fall
but in spite of it all
your love always stays the same
Hallelujah
Hallelujah
Jesus, please come
please come today
break me
mold me
use me I pray
but don't give up on me now
I'm so close to you now
I'm in need of your grace today
wipe the dirt off my face
hold me in your embrace
your love always saves the day
Hallelujah
Hallelujah
I have fallen so far
flat on my face
I'm in need of your grace today
Hallelujah
Hallelujah
Sing Hallelujah
Sing Hallelujah
Sing Hallelujah amen
On my knees here I fall
in spite of it all
Hallelujah
And though it seems hard
I'm still trusting you Lord
Hallelujah
Hallelujah
You'd think with all this extra time off; I'd do something productive; but to be honest...despite being off of work 4 days last week, and 1 this week; I'm still behind in my reading of my one-year chronological Bible and it's taken me two weeks to catch everyone up on what's going on around here.
However, we did spend a glorious weekend playing with our precious girls...who, by the way, are both now walking! That sweet little Frankenstein walk...both arms out, slow, stiff-legged, hilarious! They "talk", giggle and play together and also enjoy reading books, and have begun to imitate animal sounds as well as kisses. But my favorite is to see how they seem to truly love each other and can be so sweet to one another. I may be a little biased, but they are just the cutest baby girls!!! Most definitely double the blessing!
Sorry, got off on a rabbit trail; on to the news you really want to know:
We knew this latest procedure would not be a cure-all, but Ron was quite disappointed to wake up yakking the first morning home. However, I fear I'm to blame. Being the fabulous wife I am, (wink, wink), I decided to prepare a healthy, nutritious meal of salmon, pasta, steamed veggies , fresh cherries, and as an added treat, I stopped by Sprinkles to pick up his favorite--German Chocolate cupcake. Seems we were both so excited about this step forward, we forgot the first cardinal rule of someone with digestive issues...stick to easily digestible foods! No seeds, nuts, skins; etc. We found out the hard way that the g-tube is easily clogged, which, you guessed it, forces everything to come back up!
So, we've had to make several adjustments in eating habits. It's been a struggle but I'm happy to report, he has only yakked one other time...which had nothing to do with the g-tube/digestive issues!
We did have to make a little trip to Presby over the weekend...drain bag busted...quite a joy to wake up to...and since they had to construct apparatus specific to his unique needs; we had to make a trip in so they could reconstruct another. We were keeping the girls for the weekend so they were along for the ride. As soon as we entered the hospital we had to get a picture of them. You know you've been around a hospital too long when the first thing you do is take a picture to commemorate your grandbabies first trip there!
Sunday afternoon, Ron suddenly felt he'd been hit by a truck...more lethargic than usual, no appetite, stiff neck, body aches, joint pains and a monster headache. Anytime something comes on that suddenly, everyone worries that it might be an infection in his PICC; and being that it goes directly to his heart, well, you get the picture.
By Monday afternoon, he was running a fever. Per Dr. A's orders, off we went to have bloodwork and cultures run. Temp continued to climb all day so decision was made to go to the after-hours clinic for a full assessment. After being poked, prodded and having that nasty flu swab done, along with a sudden, random yakking episode; praise God, he tested negative for the flu. Clinic doctor said it looked to be a virus that should run it's course within about 5 days, however he would feel worse before he felt better...yippee! True to course, that night was a rough one with temp getting up to 102.3.
We found out Wednesday morning that the lab lost his blood vials and needed him to go back for another set of blood draws and cultures. Yes, this was the day schools were closed due to ice, snow and cold. We waited until afternoon when the roads had cleared up before we ventured out.
It's so good to see him finally feeling better - no fever in over 24 hours, good sleep the last couple of nights and he finally feels like eating a little.
I think I've covered just about everything now...hope you feel in the loop!
Much love,
Christie
Though I'm behind in my readings, God continues to speak to me in many ways. Exodus 10:2 (NLT) has been a sweet reminder of God's perfect plan regardless of what we're going through.
"You will be able to tell wonderful stories to your children and grandchildren about the marvelous things I am doing...to prove that I am the Lord"
along with Job 26:14 NLT
"These are just the beginning of all that He does, merely a whisper of His power"
When life gets complicated and you've dealt with difficult circumstances for an extended period of time you can easily feel abandoned. I'm so thankful we can rest in KNOWING God has promised to NEVER leave or forsake us! Even when we hurt so badly our disappointments cause us to doubt His plan and we turn from Him, He is ALWAYS there...loving us, washing us with His peace and grace. However, we have to CHOOSE to trust, CHOOSE to believe, CHOOSE to praise, CHOOSE to follow Him...no matter where the path takes us.
This great song by Heather Williams says it so well:
Hallelujah
http://www.youtube.com/watch?v=Ufof-XgwhOs
Jesus, please come
please come today
hear me
heal me
be near me I pray
I have fallen so far
flat on my face
I'm in need of your grace today
I stumble and fall
but in spite of it all
your love always stays the same
Hallelujah
Hallelujah
Jesus, please come
please come today
break me
mold me
use me I pray
but don't give up on me now
I'm so close to you now
I'm in need of your grace today
wipe the dirt off my face
hold me in your embrace
your love always saves the day
Hallelujah
Hallelujah
I have fallen so far
flat on my face
I'm in need of your grace today
Hallelujah
Hallelujah
Sing Hallelujah
Sing Hallelujah
Sing Hallelujah amen
On my knees here I fall
in spite of it all
Hallelujah
And though it seems hard
I'm still trusting you Lord
Hallelujah
Hallelujah
Wednesday, January 26, 2011
Gimme a G!
Procedure went well; 3+ hours of workin' on my guy but they were able to accomplish what they set out to do--G-tube is in place!
"In place" is a relative term for my unique guys anatomy. The only place they could access without piercing any loop of intestine was the tip end of his stomach; which in his case resides smack dab in the middle of his belly just barely below the sternum, a little off kilter from the rest of us due to extensive surgeries, scar tissue, etc.
Dr. D had to "get out the chisel and chisel away at scar tissue" in order to make this a viable option. As you can imagine, he's been one sore pup! Due to the extent of the procedure they opted to keep him overnight for observation and pain management.
Despite the fact he was off his blood thinner for 10 days prior, he has also developed a hematoma. Praise God it is not in the belly, but in his arm where they drew blood. A big ol' visibly raised hematoma...crazy! But if he's going to develop a hematoma, we'd prefer it be there! Blood thinner will not be resumed until hematoma has resolved.
Unfortunately, he's also suffering from a very sore throat from being intubated; and as a result of the heavy duty sedatives and pain meds, he had to be catheterized this morning to get some relief. He's feeling quite a bit better this afternoon; he's even gone for a couple walks around the floor and is now able to stay on top of the pain with oral meds as opposed to the Morphine pump. He's still hoping to go home today; however, it will all depend on (pardon the pun) whether or not he can "go" without the catheter.
Thank you for your continued prayers; evidenced by the peace we've experienced over the last couple of days.
"In place" is a relative term for my unique guys anatomy. The only place they could access without piercing any loop of intestine was the tip end of his stomach; which in his case resides smack dab in the middle of his belly just barely below the sternum, a little off kilter from the rest of us due to extensive surgeries, scar tissue, etc.
Dr. D had to "get out the chisel and chisel away at scar tissue" in order to make this a viable option. As you can imagine, he's been one sore pup! Due to the extent of the procedure they opted to keep him overnight for observation and pain management.
Despite the fact he was off his blood thinner for 10 days prior, he has also developed a hematoma. Praise God it is not in the belly, but in his arm where they drew blood. A big ol' visibly raised hematoma...crazy! But if he's going to develop a hematoma, we'd prefer it be there! Blood thinner will not be resumed until hematoma has resolved.
Unfortunately, he's also suffering from a very sore throat from being intubated; and as a result of the heavy duty sedatives and pain meds, he had to be catheterized this morning to get some relief. He's feeling quite a bit better this afternoon; he's even gone for a couple walks around the floor and is now able to stay on top of the pain with oral meds as opposed to the Morphine pump. He's still hoping to go home today; however, it will all depend on (pardon the pun) whether or not he can "go" without the catheter.
Thank you for your continued prayers; evidenced by the peace we've experienced over the last couple of days.
Sunday, January 23, 2011
Upcoming procedure
Just to let you know, Ron's procedure has been scheduled for Tuesday, Jan 25. Since Dr. D's first day back is Monday; he and Dr. A wanted to be able to meet to discuss Ron and come up with a game plan before tackling things on Tuesday. Dr. A also met with Dr. S to get his input (since he knows Ron's anatomy inside and out). All three doctors will be in hospital on Tuesday "just in case".
It's nice to hear they are being proactive in having everyone available if an issue arises; however, I confess it kind of FREAKS ME OUT that what is typically a simple procedure requires so much planning and foresight; and that the thought even arises that there could be complications.
I think things became more of a concern after his non-procedure last week; he developed a hematoma in his belly which put him out of commission for several days. Thankfully, it resolved on it's own with no intervention required (other than what we could do at home).
On another note, our sweet Ella and Mila were just about over their colds then it kicked back in with that awful cough, nasty noses and sleepless nights. On top of that, this weekend they also came down with a stomach bug. Mommy & Daddy say that despite continued yakking, they've been fairly happy little troopers.
Please pray:
for Dr. D as he prepares for and performs Tuesday's procedure, as well as Dr. A and Dr. S as they are on standby
for Ron-- he's been off blood thinner for 10 days in preparation and was also put on a clear liquid diet for 48 hours prior.
for the procedure to go smoothly
that success will provide Ron relief; including some much-needed, uninterrupted sleep!
We were told to come prepared to be admitted, but we're hoping that things will go so well this won't be necessary!
Choosing to "be anxious for nothing..."
Christie
"True wisdom and power are with God; counsel and understanding are His." Job 12:13 NLT
"You will have courage because you will have hope; you will be protected and will rest in safety. You will lie down unafraid...." Job 11:18-19 NLT
Thursday, January 13, 2011
update from today's procedure
Actually, I should have titled this "Update from today's NON-procedure". The day didn't go as everyone had hoped. Although we knew going into it this was a possibility, it was still disappointing.
The scope revealed there was too much scar tissue for Dr. A to see a viable spot to place the gastric tube (also known as PEG, feeding tube, and/or g-tube). Due to Ron's past extensive surgeries, things are all out of place in his belly, therefore extreme caution must be taken to ensure tube doesn't inadvertently go through an area of the intestines. The scope also revealed his esophagus looks worse than his last scope and he had a liter of fluid in his stomach. Upon suctioning this fluid out, the intestines dumped a stomach-full back in--not the way things should work.
So, where do we go from here? The results affirm g-tube is the direction to go...since his esophagus and digestive system do not function properly, it's imperative to have a way to empty the stomach in order to prevent yakking thus causing further damage. Though not the first choice, we now go to Plan B, which is Interventional Radiology. Dr. A and Dr. D (head of IR; who knows Ron's anatomy extensively) have been in consultation as to the best way to go about this. Unfortunately, they will not be able to do anything until the week of Jan 24. They will need to use CT machine (which was not functioning today) and since it will be "a complex, difficult procedure", consensus between the IR doctors was that they feel most comfortable/confident with Dr. D performing. Unfortunately, Dr. D is on vacation until the 24th.
The plan is Dr. D, with the use of ongoing CT and X-ray, will attempt to insert the PEG. We have been in consultation with his nurse who has told us she felt sure they would not want to do this as an outpatient due to the complexity, so to bring a packed bag and be prepared to stay.
Please continue to pray. Today's procedure was painful. All the poking, prodding and being stuck with needles in several areas in hopes of finding a spot to place tube into the stomach, has left Ron needing pain meds and ice packs to help with soreness and swelling.
Even though we feel we've been kicked in the stomach; we refuse to lose hope! Though sometimes it's more difficult than others, and I confess, times we want to shout "ENOUGH!"; we choose to trust God has a perfect plan AND time.
I'd love to leave you with some words of wisdom...but, honestly, tonight I'm spent. So, I'll simply say, goodnight.
Christie
The scope revealed there was too much scar tissue for Dr. A to see a viable spot to place the gastric tube (also known as PEG, feeding tube, and/or g-tube). Due to Ron's past extensive surgeries, things are all out of place in his belly, therefore extreme caution must be taken to ensure tube doesn't inadvertently go through an area of the intestines. The scope also revealed his esophagus looks worse than his last scope and he had a liter of fluid in his stomach. Upon suctioning this fluid out, the intestines dumped a stomach-full back in--not the way things should work.
So, where do we go from here? The results affirm g-tube is the direction to go...since his esophagus and digestive system do not function properly, it's imperative to have a way to empty the stomach in order to prevent yakking thus causing further damage. Though not the first choice, we now go to Plan B, which is Interventional Radiology. Dr. A and Dr. D (head of IR; who knows Ron's anatomy extensively) have been in consultation as to the best way to go about this. Unfortunately, they will not be able to do anything until the week of Jan 24. They will need to use CT machine (which was not functioning today) and since it will be "a complex, difficult procedure", consensus between the IR doctors was that they feel most comfortable/confident with Dr. D performing. Unfortunately, Dr. D is on vacation until the 24th.
The plan is Dr. D, with the use of ongoing CT and X-ray, will attempt to insert the PEG. We have been in consultation with his nurse who has told us she felt sure they would not want to do this as an outpatient due to the complexity, so to bring a packed bag and be prepared to stay.
Please continue to pray. Today's procedure was painful. All the poking, prodding and being stuck with needles in several areas in hopes of finding a spot to place tube into the stomach, has left Ron needing pain meds and ice packs to help with soreness and swelling.
Even though we feel we've been kicked in the stomach; we refuse to lose hope! Though sometimes it's more difficult than others, and I confess, times we want to shout "ENOUGH!"; we choose to trust God has a perfect plan AND time.
I'd love to leave you with some words of wisdom...but, honestly, tonight I'm spent. So, I'll simply say, goodnight.
Christie
Saturday, January 1, 2011
AWOL
Sorry we've been AWOL...busy times around here.
We've spent the last two weeks trekking back and forth to Dallas for numerous appointments, tests and procedures.
Tuesday, Dec 21, we were at UT Southwestern for annual CTA and appointment with neurosurgeon. I'm happy to report the brain aneurysm has had no change since last year, therefore, nothing to be done until this time next year. Yippee!
Wednesday, Dec 22 we were at Presbyterian for appointment with Dr A (gastroenterologist) to go over results from Esophageal Motility Study. Sad to report study shows Ron has NO motility past swallow; which means his esophagus is not functioning at all. The belief is this has been caused by all the damage from his excessive, prolonged yakking. We're at a point where his only option is to have a PEG tube placed. A PEG (percutaneous endoscope gastrostomy) tube rests in the stomach and exits through the skin of the abdomen.
This procedure will be performed Thursday, January 13 at Presbyterian. Dr. A will use an endoscope to go down Ron's throat to his stomach. When the correct spot in his stomach is reached; Dr. A will be able to see the spot due to a very bright light on the end of the scope which will show through the stomach. He will then make an incision in which to insert the tube through the skin and the stomach wall, directly into the stomach
Most of the time when you talk about having a PEG, it's for feeding purposes. Not so in Ron's case. He will continue on TPN and will also be able to take things orally. The PEG will allow him to "vent" the stomach in order to prevent yakking. He will attach the tube to a bag at night and can vent it at other times throughout the day as needed. This is not a permanent situation. The hope is, once the yakking stops, the esophagus will heal and eventually regain motility. Once this happens, he will eventually have the PEG removed.
He was really bummed about this at first. The only experiences he has had with a PEG were when he was unable to eat at all and previous to that was the awful fiasco with Aaron's feeding tube. So, in his mind; this was not a positive step. He was thinking he would no longer be able to take anything by mouth and would have to be fed through the PEG. After extensive talking with Dr. A and then having a couple of days to mull things over, he's feeling much better about it. We were told in the "typical" person; it takes about 8-12 weeks for the esophagus to heal; but would most likely be quite a bit longer for Ron considering the amount of damage in his esophagus. Dr. A will also be very cautious as to when to remove the PEG to ensure best outcome.
Wednesday, Dec 29 we received word Tuesday's labs showed a huge jump in his white count indicating infection. So we headed to Presby to be worked in to Interventional Radiology for PICC replacement. It wouldn't be Christmas without a "visit" to our friends, now would it? Thankfully, we were in and out in about 4 hours! And yes, it was good to visit with our friendly IR staff in their new digs...which I feel BCBS has probably financed on our behalf!
Speaking of which, we were thrilled to read in last weeks newspaper that Blue Cross Blue Shield had reached an agreement with Texas Health Resources! Now, if they would quickly reach an agreement with Digestive Health Associates of Texas; we'd really be happy campers.
Thursday, Dec 30 Ron had an appointment with his primary care physician to try to get some relief from these awful headaches. Unfortunately, though prescription was written, by the time pharmacy could get around to it, insurance company refused to fill until they could get more info from the doctor and their office was already closed and will be until Monday!
Poor guy, it was a really rough morning which also led into the afternoon. He finally ended up insisting on using a lollipop...which we save for emergency purposes. UGH!
In the midst of it all, we were able to get away and enjoy 4 days with the Nordell clan for our biennial Christmas reunion. This year we chose to stay local so we could spend as much time as possible with Grandma Nordell. Therefore, 31 out of our 41 family members descended upon the Embassy Suites Downtown Ft Worth. Though Ron was definitely not feeling his best, he was a real trooper. We always have a relaxing (though not necessarily restful!) time when we're together and this was no exception. Lots of family, food, game playing, swimming and just hanging out.
Ryan, Stacee and the girls made a last minute trip to Florida after receiving news that her grandpa was in the end stages of congestive heart failure. They were able to have a great Christmas with him. We're so thankful they made the decision to go. He passed away 2 days after Christmas and I know it was so meaningful to all of them to have this time together. Please keep Stacee, her mom (Diana) and all the Dimeglio family in your prayers. It's been a very difficult few months with Grandpa's death Monday, as well as the passing of Jack (Stacee's step-dad/Diana's husband) in October.
I think that's all the news from here. Please continue to pray for Ron, especially as he deals with these awful headaches and as we look toward Jan 13 and the next phase of this journey. I must confess, I'm a little anxious since our fabulous Dr. A is out of the country for the next 10 days...he's become our safety net that I'm sure we rely on way too much. This is also why his procedure will not take place until the 13th; we didn't want to do it right before he left and definitely wanted him to be the doctor to perform since he knows Ron's "guts" so well.
Though it may sound pretty gloom and doom; we're really doing fairly well. Yes, there are times, it seems overwhelming, yet when we purpose to keep our focus steady on Christ; we're renewed in knowing that whatever He calls us to, He'll provide the way.
We hope you have had a blessed Christmas and wish you a very Happy New Year!
Much love,
Christie & Ron
"Let us hold firmly to the faith we profess" Hebrews 4:14
We've spent the last two weeks trekking back and forth to Dallas for numerous appointments, tests and procedures.
Tuesday, Dec 21, we were at UT Southwestern for annual CTA and appointment with neurosurgeon. I'm happy to report the brain aneurysm has had no change since last year, therefore, nothing to be done until this time next year. Yippee!
Wednesday, Dec 22 we were at Presbyterian for appointment with Dr A (gastroenterologist) to go over results from Esophageal Motility Study. Sad to report study shows Ron has NO motility past swallow; which means his esophagus is not functioning at all. The belief is this has been caused by all the damage from his excessive, prolonged yakking. We're at a point where his only option is to have a PEG tube placed. A PEG (percutaneous endoscope gastrostomy) tube rests in the stomach and exits through the skin of the abdomen.
This procedure will be performed Thursday, January 13 at Presbyterian. Dr. A will use an endoscope to go down Ron's throat to his stomach. When the correct spot in his stomach is reached; Dr. A will be able to see the spot due to a very bright light on the end of the scope which will show through the stomach. He will then make an incision in which to insert the tube through the skin and the stomach wall, directly into the stomach
Most of the time when you talk about having a PEG, it's for feeding purposes. Not so in Ron's case. He will continue on TPN and will also be able to take things orally. The PEG will allow him to "vent" the stomach in order to prevent yakking. He will attach the tube to a bag at night and can vent it at other times throughout the day as needed. This is not a permanent situation. The hope is, once the yakking stops, the esophagus will heal and eventually regain motility. Once this happens, he will eventually have the PEG removed.
He was really bummed about this at first. The only experiences he has had with a PEG were when he was unable to eat at all and previous to that was the awful fiasco with Aaron's feeding tube. So, in his mind; this was not a positive step. He was thinking he would no longer be able to take anything by mouth and would have to be fed through the PEG. After extensive talking with Dr. A and then having a couple of days to mull things over, he's feeling much better about it. We were told in the "typical" person; it takes about 8-12 weeks for the esophagus to heal; but would most likely be quite a bit longer for Ron considering the amount of damage in his esophagus. Dr. A will also be very cautious as to when to remove the PEG to ensure best outcome.
Wednesday, Dec 29 we received word Tuesday's labs showed a huge jump in his white count indicating infection. So we headed to Presby to be worked in to Interventional Radiology for PICC replacement. It wouldn't be Christmas without a "visit" to our friends, now would it? Thankfully, we were in and out in about 4 hours! And yes, it was good to visit with our friendly IR staff in their new digs...which I feel BCBS has probably financed on our behalf!
Speaking of which, we were thrilled to read in last weeks newspaper that Blue Cross Blue Shield had reached an agreement with Texas Health Resources! Now, if they would quickly reach an agreement with Digestive Health Associates of Texas; we'd really be happy campers.
Thursday, Dec 30 Ron had an appointment with his primary care physician to try to get some relief from these awful headaches. Unfortunately, though prescription was written, by the time pharmacy could get around to it, insurance company refused to fill until they could get more info from the doctor and their office was already closed and will be until Monday!
Poor guy, it was a really rough morning which also led into the afternoon. He finally ended up insisting on using a lollipop...which we save for emergency purposes. UGH!
In the midst of it all, we were able to get away and enjoy 4 days with the Nordell clan for our biennial Christmas reunion. This year we chose to stay local so we could spend as much time as possible with Grandma Nordell. Therefore, 31 out of our 41 family members descended upon the Embassy Suites Downtown Ft Worth. Though Ron was definitely not feeling his best, he was a real trooper. We always have a relaxing (though not necessarily restful!) time when we're together and this was no exception. Lots of family, food, game playing, swimming and just hanging out.
Ryan, Stacee and the girls made a last minute trip to Florida after receiving news that her grandpa was in the end stages of congestive heart failure. They were able to have a great Christmas with him. We're so thankful they made the decision to go. He passed away 2 days after Christmas and I know it was so meaningful to all of them to have this time together. Please keep Stacee, her mom (Diana) and all the Dimeglio family in your prayers. It's been a very difficult few months with Grandpa's death Monday, as well as the passing of Jack (Stacee's step-dad/Diana's husband) in October.
I think that's all the news from here. Please continue to pray for Ron, especially as he deals with these awful headaches and as we look toward Jan 13 and the next phase of this journey. I must confess, I'm a little anxious since our fabulous Dr. A is out of the country for the next 10 days...he's become our safety net that I'm sure we rely on way too much. This is also why his procedure will not take place until the 13th; we didn't want to do it right before he left and definitely wanted him to be the doctor to perform since he knows Ron's "guts" so well.
Though it may sound pretty gloom and doom; we're really doing fairly well. Yes, there are times, it seems overwhelming, yet when we purpose to keep our focus steady on Christ; we're renewed in knowing that whatever He calls us to, He'll provide the way.
We hope you have had a blessed Christmas and wish you a very Happy New Year!
Much love,
Christie & Ron
"Let us hold firmly to the faith we profess" Hebrews 4:14
Sunday, December 5, 2010
Yippee! An update!!!
Good news!!! December 4, Ron passed the 1 year mark...1 year since he has had an inpatient hospital stay! Heartfelt thanks go to Dr. A's wonderful care as he worked with us in so many ways to make this possible. Yes, he has had multiple outpatient procedures and has many ongoing issues, but no inpatient stays~Hallelujah!
God continues to stretch us and grow us in so many ways. Asking us to trust Him even when (or maybe especially when) He calls us to step out of our comfort zone.
So what's been going on? Ron's dehydration has gotten much better and he's been off of the IV boluses for 10 days now. He has not had the dizzy, light-headed feeling for about a week. Being off of his newest medication has helped in this regard, however, he has been much more tired, a little more quiet/introspective and sleeping quite a bit; some of the reasons he had been started on that medication to begin with. Unfortunately, his kidney function has ooched up again this week so they are working on tweaking the different levels of chloride, etc in his TPN to see if they can get things back in balance. He will continue to have labs drawn weekly to keep a close eye on things. Being on long-term TPN is always a delicate balancing act.
He continues to yak pretty much daily and often twice a day. Plans are in the works to have a motility study done, hopefully before the end of the year but they aren't sure if they want to do anything new until they can get his kidney function in a more "normal" range. The push to get this procedure done before the end of the year is because as of December 31; Presbyterian; or any other hospital within the Texas Health Resources network which includes all of Presbyterian hospitals, all Harris hospitals, as well as Arlington Memorial, and each of their outpatient and short stay facilities; will no longer be providers on our insurance . Evidently THR is in negotiations, but so far has not reached an agreement with, Blue Cross Blue Shield.
This is on top of the fact that as of November, our fabulous Dr. A is no longer a provider for Blue Cross Blue Shield either. In fact, all of Digestive Health Associates of Texas (DHAT)--which is each and every one of the gastroenterologists that has treated Ron in the last 3 years at both Presby and Harris HEB--are no longer accepted providers for BCBS. Contract negotiations are ongoing between DHAT and BCBS and have been since the beginning of summer. We have been told they do not foresee a solution for the next 6-9 months.
We've been told we are free to continue to use these doctors/facilities, however, we will have to pay at a much higher out-of-network level (along with meeting all deductibles up front).
Please be in prayer regarding this issue. Dr. A has been a lifesaver in that he has continued to provide treatment for Ron and it has all been through e-mail, text and phone calls, therefore avoiding payment of ANY sort. He is so incredibly diligent in his care of Ron; having done much research and talking with many colleagues across the country on Ron's unusual case . He has always made us feel as if Ron is his only patient; willing to take our calls, texts, etc. any time, day or night, including weekends...whether or not he was the doctor on call. God has certainly blessed.
The really sticky part comes when Ron needs to have a procedure done, like now. How do we know what to do? Is God calling us to seek out a new doctor and new hospital? Or is he going to provide the added funding needed to pay for the higher out-of-network expenses and have us stay with those who are intimately familiar with him literally inside and out?
It's times like this that I really struggle with hearing God's call. If this is His call--to leave behind all that is familiar-- am I brave enough, faithful enough to go. Do I have the kind of obedience Abram had when God called him to leave his country, his relatives and his father's house and go to the land He would show him? God called him to go, and he went...without knowing where he was going! (Gen 12:1). Or am I being overly dramatic here? Typically, choosing a new doctor is not THAT big of a deal; not big enough to be compared with leaving your country and relatives! But, leave behind three years worth of intensive, ongoing care-giving???
Oh, Father; help us to be obedient to whatever Your call may be. May we have the courage to walk by faith, not by our limited sight. That we may respond as Abram did as written in Gen 12:4 "So Abram departed as the Lord had instructed him..."
We covet your prayers, faithful ones!
Christie
“Some things are so important to God that they are worth interrupting the happiness and health of His children in order to accomplish them.”
~ Charles Stanley
We must believe what Christ has in store for us is worth our present pain.
God continues to stretch us and grow us in so many ways. Asking us to trust Him even when (or maybe especially when) He calls us to step out of our comfort zone.
So what's been going on? Ron's dehydration has gotten much better and he's been off of the IV boluses for 10 days now. He has not had the dizzy, light-headed feeling for about a week. Being off of his newest medication has helped in this regard, however, he has been much more tired, a little more quiet/introspective and sleeping quite a bit; some of the reasons he had been started on that medication to begin with. Unfortunately, his kidney function has ooched up again this week so they are working on tweaking the different levels of chloride, etc in his TPN to see if they can get things back in balance. He will continue to have labs drawn weekly to keep a close eye on things. Being on long-term TPN is always a delicate balancing act.
He continues to yak pretty much daily and often twice a day. Plans are in the works to have a motility study done, hopefully before the end of the year but they aren't sure if they want to do anything new until they can get his kidney function in a more "normal" range. The push to get this procedure done before the end of the year is because as of December 31; Presbyterian; or any other hospital within the Texas Health Resources network which includes all of Presbyterian hospitals, all Harris hospitals, as well as Arlington Memorial, and each of their outpatient and short stay facilities; will no longer be providers on our insurance . Evidently THR is in negotiations, but so far has not reached an agreement with, Blue Cross Blue Shield.
This is on top of the fact that as of November, our fabulous Dr. A is no longer a provider for Blue Cross Blue Shield either. In fact, all of Digestive Health Associates of Texas (DHAT)--which is each and every one of the gastroenterologists that has treated Ron in the last 3 years at both Presby and Harris HEB--are no longer accepted providers for BCBS. Contract negotiations are ongoing between DHAT and BCBS and have been since the beginning of summer. We have been told they do not foresee a solution for the next 6-9 months.
We've been told we are free to continue to use these doctors/facilities, however, we will have to pay at a much higher out-of-network level (along with meeting all deductibles up front).
Please be in prayer regarding this issue. Dr. A has been a lifesaver in that he has continued to provide treatment for Ron and it has all been through e-mail, text and phone calls, therefore avoiding payment of ANY sort. He is so incredibly diligent in his care of Ron; having done much research and talking with many colleagues across the country on Ron's unusual case . He has always made us feel as if Ron is his only patient; willing to take our calls, texts, etc. any time, day or night, including weekends...whether or not he was the doctor on call. God has certainly blessed.
The really sticky part comes when Ron needs to have a procedure done, like now. How do we know what to do? Is God calling us to seek out a new doctor and new hospital? Or is he going to provide the added funding needed to pay for the higher out-of-network expenses and have us stay with those who are intimately familiar with him literally inside and out?
It's times like this that I really struggle with hearing God's call. If this is His call--to leave behind all that is familiar-- am I brave enough, faithful enough to go. Do I have the kind of obedience Abram had when God called him to leave his country, his relatives and his father's house and go to the land He would show him? God called him to go, and he went...without knowing where he was going! (Gen 12:1). Or am I being overly dramatic here? Typically, choosing a new doctor is not THAT big of a deal; not big enough to be compared with leaving your country and relatives! But, leave behind three years worth of intensive, ongoing care-giving???
Oh, Father; help us to be obedient to whatever Your call may be. May we have the courage to walk by faith, not by our limited sight. That we may respond as Abram did as written in Gen 12:4 "So Abram departed as the Lord had instructed him..."
We covet your prayers, faithful ones!
Christie
“Some things are so important to God that they are worth interrupting the happiness and health of His children in order to accomplish them.”
~ Charles Stanley
We must believe what Christ has in store for us is worth our present pain.
Subscribe to:
Posts (Atom)