We received responses to our questions to Dr. A; below is our e-mail to him followed be each answer in italics:
As always, after having a little time to pray and process we have several questions. We realize there may be some you are not able to answer but we appreciate your honesty regardless. Please know, we don't want you to feel burdened by us; we don't expect you to be able to "fix" everything (even though it may seem we do!). And, we don't ever want you to feel we are relying on you to work some miracle~~that's God's job! We value your professional opinion and appreciate your wisdom. We also appreciate the fact you are aware of your limitations, knowing when to and not threatened by seeking outside advice. We have encountered doctors in the past who think they are the be all/end all. I am happy to call in other doctors with expertise as needed. I am more than humble in knowing that I do not have all the answers. If you at all feel that a different perspective is needed or things are not being adequately addressed, please let me know ASAP. I have discussed the case with other doctors and we are still in the information accrual phase. If I find someone to fix the situation, I will be the first to call. Having our current information, I am going to discuss with Dr. S.
On to questions:
Are adhesions in one particular area or all the way down? In talking with Dr. M this AM, the adhesions are in multiple locations. Look at Ron’s abdomen – anywhere that you see a scar is likely tethering small bowel and preventing it from working well.
How can this be seen with DBE if it's outside the intestine? By seeing the tethering, looks like hanging drapes. Also the multiple pools of fluid are consistent with tethering at multiple locations
Is surgery even an option? Need to discuss with Dr. S. It would be a BIG surgery with lots of risks – losing significant small intestine, recurrent fistulas…
Would surgery to remove adhesions just cause more adhesions? Adhesions are common after surgery – the more surgery, the more adhesions
If the adhesions are removed will the intestines function as normal again? Hopefully
Are there signs that the intestines are indeed trying to function? Yes because Ron is able to maintain fluid and electrolyte balance despite ongoing nausea, vomiting. The problem is motility – things are having a hard time moving down the pipes and stagnating leading to nausea, vomiting..
TPN what are the long-term effects? Can you live on it forever? TPN can be a long term solution – ie, lifelong. Complications include micronutrient deficiencies, neuropathy, and abnormal liver tests.
Quality of life? some sense of normalcy with life and eating. This is the BIG one. We have to talk together about what risks need to be considered for what level quality of life…
What are limitations on food? What is the line? (you need to ask Ron more about what he means by this) I would limit to liquids. The line is just before nausea and vomiting start.
Why did he seem to do well for a while on eating and now this? Adhesions just continued to “scar down?” I think the adhesions are a progressive process with continual, ongoing scarring. It is not inevitable that scarring progresses indefinitely but I think problems worsening with more scarring over time.
Can they somehow "suck out" the stagnant liquid that is already in the GI tract? The stagnant fluid is a secondary problem. It is the result of things not moving down the intestines in a concerted manner. The fluid then becomes a breeding ground for bacteria leading to nausea, bloating, and possibly diarrhea.
What about potential bacterial overgrowth? What exactly does this mean? See above. Try to limit it with cyclic antibiotics.
His answers led to more questions from us, of course!
Ron wants to know what’s it going to hurt for him to try to eat food? Will this cause added bacterial build up that would be harmful? Or just the added issue of vomiting exacerbating esophagitis? Or ...?
We would really like a better understanding of his fluid intake…what exactly he should be taking in; i.e. protein drinks-- what to look for, low in sugar? High in protein? High in calories? Which kinds are best suited for his needs, etc
Interested in knowing what Dr. S has to say.
Are we at that point of making a decision of live the rest of his life on fluids & TPN or consider the risks of surgery and make a decision?
If surgery is not recommended, do we consider this is how it’s gonna be for the rest of his life?
Not sure you can answer, but how long does insurance cover TPN? Home health? Supplies? , etc
Areas of concern:
Lot of edema going on with swelling in left leg more significant than right; how is this controlled? If he's going to be on TPN indefinitely the fluid gain is really going to be a problem seeing how much it is in just the 3 weeks he's been on.
The swelling makes him feel heavy (like he has ankle weights on) thus it slows him down. (He also gets ridges around legs when wears socks; and I know it's not good for his skin, etc). How do we address this? (weight is now up by 12 lbs since beginning TPN)
Once again he’s been getting a lot of heartburn even though he’s just on fluids. But vomiting has decreased to only 3 times in the last 11 days, woo hoo!!!
Thanks for your continued prayer! We'll let you know when we know!
Christie
Friday, February 27, 2009
Wednesday, February 25, 2009
You NEVER Let Go
First off, thanks for giving us some space. Some need to be surrounded by people when they are going through a crisis and others need to be alone. Ron and I both fall in the latter category. It's difficult for us to have to be interacting with other people when we just need the quiet to allow God to help us process and speak to our hearts.
We believe God has called us to total transparency, so, here goes....
As we were sitting in the recovery bay hearing Dr. M's results we were quite shell-shocked and honestly felt we'd been handed a death sentence. I told Ron several times as we were driving home "I'm ready for Jesus to return, NOW!" The whole time my head kept screaming "I can't do this anymore!!!!" But, then, I was reminded no matter what the news, our faith in Christ had not changed ~ He is the same yesterday, today and tomorrow!
It was a long day, Ron did alot of sleeping and I confess I spent a good deal of time pacing, praying, calling out to God to give us some hope here! Last night as we processed through we had some good discussions and Ron remarked "I'm not sure how to deal with this yet. I feel we are in limbo and once we know exactly what we're looking at long term, we'll be able to deal with it. Just like when Aaron had his accident, we knew we would take the "new Aaron" however he was and go from there. Once we find out what the new me looks like, we'll learn to live with it, one day at a time. Our anthem has always been "enough for today" and that has not changed!"
We welcome any questions/comments you may have; if we don't know the answer (and most likely we don't!) we'll pass them on to Dr. A and Dr. S. Some of our questions are:
Are adhesions in one particular area or all the way down?
If the adhesions are removed will the intestines function as normal again?
Are there signs that the intestines are indeed trying to function?
TPN what are the long-term effects? Can you live on it forever?
Quality of life? Will there ever be some sense of normalcy with life and eating.
Why did he seem to do well for a while on eating and now this? Adhesions just continued to “scar down?”
Is surgery even an option?
Will surgery to remove adhesions just cause more adhesions?
We were asked by others: does this mean that doctors could realistically remove the adhesions? Don't know yet, Dr. Shires had said earlier he didn't feel surgery was an option, but since we've seemingly run out of any other options I don't know what his thoughts will be now.
And:
can they somehow "suck out" the stagnant liquid that is already in the GI tract? does this mean that the tpn is a lifetime option if the adhesions cannot be removed?Don't know the answer to this, I would think they'd have told us if there was, but I'm passing this question on.
I'm sure there is more I forgot to pass on but I wanted to get this out before I headed to work. I know many of you are anxious to hear how we're doing; on the whole I'd say pretty well, I'll steal a line from a great hymn (thanks for the reminder, Lisa)....no matter what, "It is well with my (our) soul(s)".
Yes, Louise, we agree God is able and He will provide a way!
Christie
Great song God has used to minister to me:
You Never Let Go
Matt Redman
http://www.youtube.com/watch?v=y83-vMeWc9E&feature=PlayList&p=B4F0FC5EFF7A9BF1&playnext=1&index=37
(it's on my playlist at the bottom of the blog)
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
(Chorus:)
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth
(Chorus)
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
(Chorus 2x's)
We believe God has called us to total transparency, so, here goes....
As we were sitting in the recovery bay hearing Dr. M's results we were quite shell-shocked and honestly felt we'd been handed a death sentence. I told Ron several times as we were driving home "I'm ready for Jesus to return, NOW!" The whole time my head kept screaming "I can't do this anymore!!!!" But, then, I was reminded no matter what the news, our faith in Christ had not changed ~ He is the same yesterday, today and tomorrow!
It was a long day, Ron did alot of sleeping and I confess I spent a good deal of time pacing, praying, calling out to God to give us some hope here! Last night as we processed through we had some good discussions and Ron remarked "I'm not sure how to deal with this yet. I feel we are in limbo and once we know exactly what we're looking at long term, we'll be able to deal with it. Just like when Aaron had his accident, we knew we would take the "new Aaron" however he was and go from there. Once we find out what the new me looks like, we'll learn to live with it, one day at a time. Our anthem has always been "enough for today" and that has not changed!"
We welcome any questions/comments you may have; if we don't know the answer (and most likely we don't!) we'll pass them on to Dr. A and Dr. S. Some of our questions are:
Are adhesions in one particular area or all the way down?
If the adhesions are removed will the intestines function as normal again?
Are there signs that the intestines are indeed trying to function?
TPN what are the long-term effects? Can you live on it forever?
Quality of life? Will there ever be some sense of normalcy with life and eating.
Why did he seem to do well for a while on eating and now this? Adhesions just continued to “scar down?”
Is surgery even an option?
Will surgery to remove adhesions just cause more adhesions?
We were asked by others: does this mean that doctors could realistically remove the adhesions? Don't know yet, Dr. Shires had said earlier he didn't feel surgery was an option, but since we've seemingly run out of any other options I don't know what his thoughts will be now.
And:
can they somehow "suck out" the stagnant liquid that is already in the GI tract? does this mean that the tpn is a lifetime option if the adhesions cannot be removed?Don't know the answer to this, I would think they'd have told us if there was, but I'm passing this question on.
I'm sure there is more I forgot to pass on but I wanted to get this out before I headed to work. I know many of you are anxious to hear how we're doing; on the whole I'd say pretty well, I'll steal a line from a great hymn (thanks for the reminder, Lisa)....no matter what, "It is well with my (our) soul(s)".
Yes, Louise, we agree God is able and He will provide a way!
Christie
Great song God has used to minister to me:
You Never Let Go
Matt Redman
http://www.youtube.com/watch?v=y83-vMeWc9E&feature=PlayList&p=B4F0FC5EFF7A9BF1&playnext=1&index=37
(it's on my playlist at the bottom of the blog)
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
(Chorus:)
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth
(Chorus)
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
(Chorus 2x's)
Tuesday, February 24, 2009
Short version update
Wanted to update you all but am tired and a little overwhelmed so here's the short version. I'll go into more detail later today or tomorrow (after we've had a chance to pray and process)
His intestines looked like a winding stream with many branches (from previous surgeries and fistulas) with pockets of stagnant fluid at every turn due to lack of stimulation to push stuff through. No obstruction or stricture was noted.
Adhesions have led to significant tethering of bowel which prevents intestinal stimulation.
Dr. M says only option he sees would be for someone to spend a day in his belly removing adhesions
Continuous TPN will be necessary and any type of food or liquid will be a breeding ground for bacterial overgrowth which leads to long term problems. There is already stagnant liquid in GI tract.
Obviously, we have many questions/concerns with the main one being "where do we go from here?"
Please continue to pray as we lean hard on you for encouragement and support, and on the Father for strength, peace, joy, hope and courage.
Much love,
Christie
His intestines looked like a winding stream with many branches (from previous surgeries and fistulas) with pockets of stagnant fluid at every turn due to lack of stimulation to push stuff through. No obstruction or stricture was noted.
Adhesions have led to significant tethering of bowel which prevents intestinal stimulation.
Dr. M says only option he sees would be for someone to spend a day in his belly removing adhesions
Continuous TPN will be necessary and any type of food or liquid will be a breeding ground for bacterial overgrowth which leads to long term problems. There is already stagnant liquid in GI tract.
Obviously, we have many questions/concerns with the main one being "where do we go from here?"
Please continue to pray as we lean hard on you for encouragement and support, and on the Father for strength, peace, joy, hope and courage.
Much love,
Christie
Monday, February 23, 2009
Baylor procedure rescheduled
Thank you for your prayers! God heard and answered!
We got a call today informing us Ron's procedure had been moved up. He will undergo the double balloon enteroscopy tomorrow, Tuesday, Feb 24 at 6AM. We weren't too surprised they were moving him to an earlier date, except they only do this procedure on Monday's and Wednesday's. Not sure how it happened but for whatever reason, they are making an exception for him. He is more than ready to get this procedure behind him and is hopeing to finally get some answers.
Please pray:
for Dr. M as he performs the procedure, that it will not be his hands, but God's; and that it will be God's wisdom as well as the knowledge He has given that brings about a definitive answer. Dr. M will use a 12 foot long scope to thread down Ron's throat and snake down through intestines. YIKES!
that scar tissue will not be an issue and they will be able to go as far down as necessary.
for Ron, that the discomfort will be minimal.
that the results will be much better than we would have ever imagined
I would be lying to say I'm not a little anxious; I'm not sure if it's more anxiety that they will find something; or that they won't! However, God keeps reminding me He is in control and I'm to be anxious for nothing.
Thanks, faithful prayer warriors! Not sure how quickly we'll know results, if they'll tell us right away or not, but I'll try to update sometime tomorrow.
GOD IS ABLE!
Much love,
Christie
"Blessed is the man who fears the Lord, who finds great delight in His commands...Even in darkness light dawns for the upright,...Good will come to him...Surely, he will never be shaken...He will have no fear of bad news; his heart is steadfast, trusting in the Lord. His heart is secure, he will have no fear... Psalm 112: 1, 4-8 (selected)
We got a call today informing us Ron's procedure had been moved up. He will undergo the double balloon enteroscopy tomorrow, Tuesday, Feb 24 at 6AM. We weren't too surprised they were moving him to an earlier date, except they only do this procedure on Monday's and Wednesday's. Not sure how it happened but for whatever reason, they are making an exception for him. He is more than ready to get this procedure behind him and is hopeing to finally get some answers.
Please pray:
for Dr. M as he performs the procedure, that it will not be his hands, but God's; and that it will be God's wisdom as well as the knowledge He has given that brings about a definitive answer. Dr. M will use a 12 foot long scope to thread down Ron's throat and snake down through intestines. YIKES!
that scar tissue will not be an issue and they will be able to go as far down as necessary.
for Ron, that the discomfort will be minimal.
that the results will be much better than we would have ever imagined
I would be lying to say I'm not a little anxious; I'm not sure if it's more anxiety that they will find something; or that they won't! However, God keeps reminding me He is in control and I'm to be anxious for nothing.
Thanks, faithful prayer warriors! Not sure how quickly we'll know results, if they'll tell us right away or not, but I'll try to update sometime tomorrow.
GOD IS ABLE!
Much love,
Christie
"Blessed is the man who fears the Lord, who finds great delight in His commands...Even in darkness light dawns for the upright,...Good will come to him...Surely, he will never be shaken...He will have no fear of bad news; his heart is steadfast, trusting in the Lord. His heart is secure, he will have no fear... Psalm 112: 1, 4-8 (selected)
Wednesday, February 18, 2009
GI specialist appointment
Sorry for the delay! Yesterday's appointment with Dr. M was basically just an initial consultation with the purpose of getting the next procedure scheduled. Ron is scheduled for the first available spot Dr. M had for a Double Balloon Enteroscopy (DBE) which is March 11, 7AM at Baylor in Dallas. He is on "the list" in hopes that there will be a cancellation and he can get in at an earlier date.
Thanks for your continued prayer support!
Thanks for your continued prayer support!
Monday, February 16, 2009
Gastro specialist
Tomorrow (Tuesday) at 10AM we have our consultation with the specialist at Baylor. Please pray for Ron as well as Dr. M.
TPN has caused Ron to gain a few pounds (fluid) although he continues to be very weak. He has "felt like a limp noodle all day." And after a couple of days of reprieve from puking, he's back at it again. UGH!
I'll try to send an update tomorrow evening.
Christie
TPN has caused Ron to gain a few pounds (fluid) although he continues to be very weak. He has "felt like a limp noodle all day." And after a couple of days of reprieve from puking, he's back at it again. UGH!
I'll try to send an update tomorrow evening.
Christie
Saturday, February 14, 2009
Happy birthday to our sweet Valentine girl!
Today is our first daughter's birthday!
I can't imagine how we would have survived this last year and a half without her willingness to put aside herself (along with putting on hold the plans and dreams she and Aaron had for their future) in order to move here to be such an incredible support system for us.
She has endured the ups and downs of this wild roller coaster ride we've been on while beginning married life, having to move three times, change schools twice and on top of all of that she has cared for Ron while I worked, set up TPN infusion, administered flushes, cooked, cleaned, run errands, made many trips to Presby to bring things we needed, and anything else that needed to be done with a smile on her face.
Today, we celebrate you, Kristin, and what a blessing you have been to us!
Happy birthday! We love you!
Wednesday, February 11, 2009
Dr A's answers
Dr. A's answers to our original questions regarding results from enteroscopy last week:
What are the long term ramifications of this? Not sure as yet.
Will this get worse, or pretty much stay the same? Not sure. If the segment of intestine does not work and the medications don't work, then it may get worse as the segment of intestine gets larger.
Will he ever be able to eat "real food" again? I want him to but not sure as yet.
How will he be able to keep up nutrition? We always have TPN if needed. That is why I wanted another office weight check to see.
Do you have a dietitian you recommend? We used a dietician that the TPN company used. Otherwise I have two others in mind but main issue is if insurance covers.
Will he ever gain back strength? stamina? Or If this drug doesn't work has he reached his max potential? I hope he improves. If the meds don't work then we add on TPN and hopefully he will improve with improved nutrition
Obviously, he'll have to have a PICC line put in; when and where would this take place? We would do it at Presby
What about the vomiting that he's had, even though he's only on full liquids? That doesn't seem to fit with our theory. Hopefully the domperidone will make some positive difference.
How large of section of bowel and exactly where is it located? It is about 10 cm long and dilated to 8 cm. It is in the proximal jejunum - on the images, it appears to be a foot beyond the stomach.
Explain again why surgery is not an option. Dr. S feels that if the intestine doesn't work then taking out more intestine may leave more nonfunctioning bowel segments. Also, Ron's abdomen is not the easiest place to enter to do surgery.
Will surgery ever be an option? This is still unclear. After the enteroscopy, we thought that there was no stricture or narrowing. As I think about it, it is possible that we didn't get far enough. An option may be to refer Ron to Baylor for a special procedure with the intent of scoping the entire small intestine to look farther down than I went to verify that there is no narrowing. I pressed Dr. S about possibility of surgery and we are going to talk about it again.
How will we know if Domperidone is working? Nausea and vomiting should improve or resolve
Can anything be done to "flush out" to get rid of putrid stuff ? We can try a round of antibiotics, such as Metronidazole to kill the anaerobic bacteria.
Why did he do well for so long and now... I agree, this bothers me as well. The time course fits more with narrowing and stricture and not with a nonfunctioning segment of bowel. This is one of the reasons that I am rethinking the surgery option.
Several people have asked me: "why not do a colostomy?" My layman's answer would be: A colostomy is used to void matter once it reaches the colon. Ron's problem is in the small intestine, which is above the colon, therfore this would not help his problem.
Hope this helps with any questions you might have, or this may be more information than you wanted to know!
Christie
"Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer" Psalm 94:19 Living Bible (thanks Jim & Carol)
What are the long term ramifications of this? Not sure as yet.
Will this get worse, or pretty much stay the same? Not sure. If the segment of intestine does not work and the medications don't work, then it may get worse as the segment of intestine gets larger.
Will he ever be able to eat "real food" again? I want him to but not sure as yet.
How will he be able to keep up nutrition? We always have TPN if needed. That is why I wanted another office weight check to see.
Do you have a dietitian you recommend? We used a dietician that the TPN company used. Otherwise I have two others in mind but main issue is if insurance covers.
Will he ever gain back strength? stamina? Or If this drug doesn't work has he reached his max potential? I hope he improves. If the meds don't work then we add on TPN and hopefully he will improve with improved nutrition
Obviously, he'll have to have a PICC line put in; when and where would this take place? We would do it at Presby
What about the vomiting that he's had, even though he's only on full liquids? That doesn't seem to fit with our theory. Hopefully the domperidone will make some positive difference.
How large of section of bowel and exactly where is it located? It is about 10 cm long and dilated to 8 cm. It is in the proximal jejunum - on the images, it appears to be a foot beyond the stomach.
Explain again why surgery is not an option. Dr. S feels that if the intestine doesn't work then taking out more intestine may leave more nonfunctioning bowel segments. Also, Ron's abdomen is not the easiest place to enter to do surgery.
Will surgery ever be an option? This is still unclear. After the enteroscopy, we thought that there was no stricture or narrowing. As I think about it, it is possible that we didn't get far enough. An option may be to refer Ron to Baylor for a special procedure with the intent of scoping the entire small intestine to look farther down than I went to verify that there is no narrowing. I pressed Dr. S about possibility of surgery and we are going to talk about it again.
How will we know if Domperidone is working? Nausea and vomiting should improve or resolve
Can anything be done to "flush out" to get rid of putrid stuff ? We can try a round of antibiotics, such as Metronidazole to kill the anaerobic bacteria.
Why did he do well for so long and now... I agree, this bothers me as well. The time course fits more with narrowing and stricture and not with a nonfunctioning segment of bowel. This is one of the reasons that I am rethinking the surgery option.
Several people have asked me: "why not do a colostomy?" My layman's answer would be: A colostomy is used to void matter once it reaches the colon. Ron's problem is in the small intestine, which is above the colon, therfore this would not help his problem.
Hope this helps with any questions you might have, or this may be more information than you wanted to know!
Christie
"Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer" Psalm 94:19 Living Bible (thanks Jim & Carol)
Tuesday, February 10, 2009
Savior Please
Thanks for you patience. It typically takes me a day or so to process all that's going on but here's the latest:
A REALLY BAD weekend made it seem as if things were crushing in on us. Unfortunately, we've seen no results from the new medication (domperidone); he continues to have MAJOR reflux along with continued "yakking", despite being on a liquid diet. This leads to sleepless nights...literally he slept about 2 hours total Saturday night and not much more than that on Friday. He looked awful Sunday and I was getting quite concerned. Sunday night I was at a very difficult place where I told God I just didn't know what to pray or even how to pray any more! We were at the end of our options, with Ron continuing on this downward trend. I was begging God to give us a glimmer of hope.
Yesterday's appointment verified Ron has lost even more weight...I call him my Auschwitz man...thus, the reason for the PICC line placement. We were so thankful they were able to work him in down in radiology, therefore avoiding another trip to Presby this week. TPN (IV nutrition) will begin in the next day or so, once they receive lab results and come up with the correct formula for him. The hope is that after an initial regimen to get him balanced, he will then only require TPN a few nights a week to keep him "tanked up". And decision was made to continue on domperidone for a while with the hope that it might still kick in.
We are blessed to have such tenacious, persistent doctors...our glimmer of hope! Dr. A is not willing to believe there is nothing left to be done. He still feels Ron's symptoms are more in correlation with an obstruction or stricture of some sort, as opposed to a section of nonfunctioning bowel. He recommends another type of enteroscopy that will enable them to see the entire small intestine (to look farther down than he was able to go) to see if there is anything going on. This procedure is only done at Baylor Hospital in Dallas so Dr. A is referring Ron to the specialist there. He himself will contact this specialist and let us know as soon as the procedure is scheduled.
The possibilities we know of at this point are:
if they do the enteroscope and find a narrowing or stricture they may possibly be able to use a balloon to "stretch" it (may need to be done over several times)
if they find an obstruction then surgery may be an option
Dr. A and Dr. S have been talking back and forth and are still reluctant to do surgery. Dr. S says: "if intestine doesn't work, then taking out more intestine may leave more nonfunctioning bowel segments. Also, Ron's abdomen is not the easiest place to enter to do surgery." There is also a greater chance than normal that he could once again have the same problems as before with fistulas, etc. Ron would really like to continue to explore this option, he wants to strive for a better quality of life; his current status is quite difficult.
Please join us in praying for wisdom and discernment, but mostly, definitive answers! We would prefer a solution that does not require surgery.
He is able!
Christie
Just as a boat must face storms head on; we must face our storms (trials) in the same way...head on! Trials are guaranteed; our part is to be prepared.
"Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad--because these trials will make you partners with Christ in His suffering, and afterward you will have the wonderful joy of sharing His glory..." I Peter 4:12-13 NLT
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
*** I've added a playlist of some of my favorite songs so BEFORE you can listen to a link you must scroll to bottom of page to pause the songs playing from my playlist.
Savior Please
Josh Wilson
http://www.youtube.com/watch?v=HCLr_pvuwH4
Savior, please take my hand
I work so hard, I live so fast
This life begins, and then it ends
And I do the best that I can, but I don't know how long I'll last
I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me
Savior, please help me stand
I fall so hard, I fade so fast
Will You begin right where I end
And be the God of all I am because You're all I have
I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me
Hallelujah
Everything You are to me
Is everything I'll ever need
And I am learning to believe
That I don't have to prove a thing
'Cause You're the one who's saving me
I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me
A REALLY BAD weekend made it seem as if things were crushing in on us. Unfortunately, we've seen no results from the new medication (domperidone); he continues to have MAJOR reflux along with continued "yakking", despite being on a liquid diet. This leads to sleepless nights...literally he slept about 2 hours total Saturday night and not much more than that on Friday. He looked awful Sunday and I was getting quite concerned. Sunday night I was at a very difficult place where I told God I just didn't know what to pray or even how to pray any more! We were at the end of our options, with Ron continuing on this downward trend. I was begging God to give us a glimmer of hope.
Yesterday's appointment verified Ron has lost even more weight...I call him my Auschwitz man...thus, the reason for the PICC line placement. We were so thankful they were able to work him in down in radiology, therefore avoiding another trip to Presby this week. TPN (IV nutrition) will begin in the next day or so, once they receive lab results and come up with the correct formula for him. The hope is that after an initial regimen to get him balanced, he will then only require TPN a few nights a week to keep him "tanked up". And decision was made to continue on domperidone for a while with the hope that it might still kick in.
We are blessed to have such tenacious, persistent doctors...our glimmer of hope! Dr. A is not willing to believe there is nothing left to be done. He still feels Ron's symptoms are more in correlation with an obstruction or stricture of some sort, as opposed to a section of nonfunctioning bowel. He recommends another type of enteroscopy that will enable them to see the entire small intestine (to look farther down than he was able to go) to see if there is anything going on. This procedure is only done at Baylor Hospital in Dallas so Dr. A is referring Ron to the specialist there. He himself will contact this specialist and let us know as soon as the procedure is scheduled.
The possibilities we know of at this point are:
if they do the enteroscope and find a narrowing or stricture they may possibly be able to use a balloon to "stretch" it (may need to be done over several times)
if they find an obstruction then surgery may be an option
Dr. A and Dr. S have been talking back and forth and are still reluctant to do surgery. Dr. S says: "if intestine doesn't work, then taking out more intestine may leave more nonfunctioning bowel segments. Also, Ron's abdomen is not the easiest place to enter to do surgery." There is also a greater chance than normal that he could once again have the same problems as before with fistulas, etc. Ron would really like to continue to explore this option, he wants to strive for a better quality of life; his current status is quite difficult.
Please join us in praying for wisdom and discernment, but mostly, definitive answers! We would prefer a solution that does not require surgery.
He is able!
Christie
Just as a boat must face storms head on; we must face our storms (trials) in the same way...head on! Trials are guaranteed; our part is to be prepared.
"Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad--because these trials will make you partners with Christ in His suffering, and afterward you will have the wonderful joy of sharing His glory..." I Peter 4:12-13 NLT
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
*** I've added a playlist of some of my favorite songs so BEFORE you can listen to a link you must scroll to bottom of page to pause the songs playing from my playlist.
Savior Please
Josh Wilson
http://www.youtube.com/watch?v=HCLr_pvuwH4
Savior, please take my hand
I work so hard, I live so fast
This life begins, and then it ends
And I do the best that I can, but I don't know how long I'll last
I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me
Savior, please help me stand
I fall so hard, I fade so fast
Will You begin right where I end
And be the God of all I am because You're all I have
I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me
Hallelujah
Everything You are to me
Is everything I'll ever need
And I am learning to believe
That I don't have to prove a thing
'Cause You're the one who's saving me
I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me
Monday, February 9, 2009
All the cool kids have a PICC line!
It's been a VERY LONG day! Ron's appointment with Dr. A was at 2PM and we arrived home about 8:45.
Many things were discussed and some preliminary decisions made but I'm too tired to go into all of it tonight. He did have PICC line placed (down in Interventional Radiology at Presby) which meant we had to go through admissions, one reason for the lateness in our arriving home.
I'll post details tomorrow. In the meantime, please continue to pray for complete healing.
Christie
Many things were discussed and some preliminary decisions made but I'm too tired to go into all of it tonight. He did have PICC line placed (down in Interventional Radiology at Presby) which meant we had to go through admissions, one reason for the lateness in our arriving home.
I'll post details tomorrow. In the meantime, please continue to pray for complete healing.
Christie
Wednesday, February 4, 2009
Happy Birthday, Baby Boy!
Today is our baby's birthday!
Where has the time gone? Aaron, we are so proud of you and praise God for blessing us with you 24 years ago today! May God bless you beyond that which you could ever imagine, today and always! We love you!
Where has the time gone? Aaron, we are so proud of you and praise God for blessing us with you 24 years ago today! May God bless you beyond that which you could ever imagine, today and always! We love you!
Tuesday, February 3, 2009
Detailed results
It's been a rough day; the news we received was a shock to say the least. Now that we've had a little more time to begin processing this challenging news, I'm able to share more details..
In restrospect, maybe we should have assumed this could be a possibility since Dr. S's desire to be present was so he would have a "visual roadmap" in case surgery was unavoidable and the section of bowel was close to the skin. In everyone's mind the worst case scenario would be the need for surgery to remove the section of nonfunctioning bowel; definitely an option no one was looking forward to.
So now, our hope is that the Domperidone will wake-up the intestines; increase movement/contractions of the bowel to promote movement through the GI tract. Domperidone is the non-FDA approved drug which is a compound drug, therefore it won't be available until tomorrow. Unfortunately, the doctors say they don’t hold out much hope for it to work.
We will see Dr. A again on Monday at which time he will reevaluate the situation (if the Domperidone is going to work, we should see indications at this point). Ron will remain on a full liquid diet until then.
If the Domperidone does not work, he will permanently be on a full liquid diet and will also be put back on TPN (possibly just a few days a week in order to keep him "tanked up").
Ron slept pretty much all day; waking at an early hour get to Presby by 6AM and then the anesthesia used during the 2 hour long procedure. He was pretty out of it when Dr. A shared his findings with me and I was so thankful he slept for the long ride home. I needed that time to allow God to wash over me as I grappled with my own emotions. I put in one of my favorite Selah CD's and allowed the words to comfort my battle weary soul. I was praying he would sleep and not ask me any quesitons until we got home (where Ryan was waiting to offer extra support as I broke the news).
As we're coming out of the fog, we've thought of several questions to ask Dr. A, please feel free to send us any questions you have and if we don't have the answer, and haven't thought to ask that question, we will!
Questions we've posed to Dr. A so far:
What are the long term ramifications of this?
Will his condition get worse, or pretty much stay the same?
Will he ever gain back strength? stamina? Or if this drug doesn’t work, has he reached his max potential?
Will he ever be able to eat “real food” again?
How will he be able to keep up nutrition?
Do you have a dietitian you recommend?
Obviously, he’ll have to have a PICC line put in; when and where will this take place?
What about the vomiting that he’s had, even though he’s been on full liquids?
I'll share his answers when I receive them.
Thanks for your love and support!
Christie
"God will always give what is right to His people who cry to Him night and day and He will not be slow to answer them" Luke 18:7
"Do not be afraid or discouraged. For the Lord your God is with you wherever you go." Joshua 1:9
(thanks Kay & Laurie)
In restrospect, maybe we should have assumed this could be a possibility since Dr. S's desire to be present was so he would have a "visual roadmap" in case surgery was unavoidable and the section of bowel was close to the skin. In everyone's mind the worst case scenario would be the need for surgery to remove the section of nonfunctioning bowel; definitely an option no one was looking forward to.
So now, our hope is that the Domperidone will wake-up the intestines; increase movement/contractions of the bowel to promote movement through the GI tract. Domperidone is the non-FDA approved drug which is a compound drug, therefore it won't be available until tomorrow. Unfortunately, the doctors say they don’t hold out much hope for it to work.
We will see Dr. A again on Monday at which time he will reevaluate the situation (if the Domperidone is going to work, we should see indications at this point). Ron will remain on a full liquid diet until then.
If the Domperidone does not work, he will permanently be on a full liquid diet and will also be put back on TPN (possibly just a few days a week in order to keep him "tanked up").
Ron slept pretty much all day; waking at an early hour get to Presby by 6AM and then the anesthesia used during the 2 hour long procedure. He was pretty out of it when Dr. A shared his findings with me and I was so thankful he slept for the long ride home. I needed that time to allow God to wash over me as I grappled with my own emotions. I put in one of my favorite Selah CD's and allowed the words to comfort my battle weary soul. I was praying he would sleep and not ask me any quesitons until we got home (where Ryan was waiting to offer extra support as I broke the news).
As we're coming out of the fog, we've thought of several questions to ask Dr. A, please feel free to send us any questions you have and if we don't have the answer, and haven't thought to ask that question, we will!
Questions we've posed to Dr. A so far:
What are the long term ramifications of this?
Will his condition get worse, or pretty much stay the same?
Will he ever gain back strength? stamina? Or if this drug doesn’t work, has he reached his max potential?
Will he ever be able to eat “real food” again?
How will he be able to keep up nutrition?
Do you have a dietitian you recommend?
Obviously, he’ll have to have a PICC line put in; when and where will this take place?
What about the vomiting that he’s had, even though he’s been on full liquids?
I'll share his answers when I receive them.
Thanks for your love and support!
Christie
"God will always give what is right to His people who cry to Him night and day and He will not be slow to answer them" Luke 18:7
"Do not be afraid or discouraged. For the Lord your God is with you wherever you go." Joshua 1:9
(thanks Kay & Laurie)
Good news/Bad news
Good news: no surgery.
Bad news: surgery is not an option.
There is no stricture or obstruction and there is an area of the small bowel that is nonfunctioning. The location of the small bowel that is affected is in an area behind the colon thus ruling out surgery.
They will start him on the Domperidone tomorrow.
Please pray, our emotions are reeling, our heads are trying to get a grasp on the ramifications of this news; and our spirit’s seem crushed, but WE REFUSE TO LOSE HOPE!
I’ll send more details later.
Bad news: surgery is not an option.
There is no stricture or obstruction and there is an area of the small bowel that is nonfunctioning. The location of the small bowel that is affected is in an area behind the colon thus ruling out surgery.
They will start him on the Domperidone tomorrow.
Please pray, our emotions are reeling, our heads are trying to get a grasp on the ramifications of this news; and our spirit’s seem crushed, but WE REFUSE TO LOSE HOPE!
I’ll send more details later.
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