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.

Aye yi yi....

....my unique guy!!!!!

We're spending another weekend pretty much home-bound. Ron again began experiencing symptoms of dehydration Wednesday. Despite another increase of fluid in TPN, his kidney function was back in the unacceptable zone; along with being dizzy/light headed. As of Friday, he was back on lactated ringers; which he had only been off of about 10 days. Yet we are so very thankful we are able to manage this at home. The IV is a bit of a nuisance since it must be infused as a gravity drip as opposed to going through a pump and being stored in a backpack like his TPN. And since he only has the single lumen PICC, this means he has his lovely IV pole to drag around with him for 4+ hours a day. Unfortunately, for now, he only has a small window of time each afternoon when he is not connected to either TPN or IV. Ella and Mila are fascinated with the wheels on the IV pole and Mila has especially become aware of the IV line coming out of Papa's arm. Neither of them have attempted to pull on it but are becoming curious about it.

In consultation with Dr. A, we've gone over and over what has changed in the last 6 weeks to cause this to repeatedly be happening. The only variable we can come up with is the introduction of a new medication around that time. This medication has never shown in clinical trials to act as a diuretic, but in Ron's case that seems to be what is taking place. It's causing his body to not hold on to the fluid it needs, leading him to become dehydrated. This medication was discontinued as of Thursday and he will have blood drawn again on Monday. Typically, the kidney function looks good while on the daily IV bolus; it's about a week later that the downward spiral begins.

Your prayers are coveted as we seek a resolution to this latest craziness!

Much love,
Christie

"As for me, I look to the Lord for His help. I wait confidently for God to save me, and my God will certainly hear me." Micah 7:7 NLT

What a ride!

Oh My Word! These last few weeks have been crazy! I've wanted to send out an update but Ron's kept me so busy, I feel I'm meeting myself coming and going!

You all know about Ron's battle with dehydration the first to mid part of October. Well, two weeks later he started exhibiting symptoms again. This time the dehydration was worse and definitely affecting his kidney function, leaving us once again in the battle to keep him out of the hospital. Dr. A further increased the fluid level in his TPN and this time placed him on IV lactated ringers for 7 days.

Nurse Nordell prepping IV!


Poor guy, on top of feeling puny when he's dehydrated; he's also pretty much home-bound. We have to be more aware of his fluid intake and output, keep things fairly low key and he is not allowed to drive or leave the house alone (even for a walk).

Unfortunately, he got a little worse before he got better with a real scare Monday when his weekend labs came back much worse requiring STAT labs done Monday after work. Upon returning from the lab, I mowed the yard, repacked my hospital bag and took a shower anticipating a call telling us to head to Presby. Praise God, Dr. A's 7:30 PM call was to tell us the fluids had finally kicked in and his lab results were markedly better.

Though things were a little crazy, we were able to enjoy a fun weekend with out of town family. It was especially nice for Ron to have so many sporting events going on to keep him occupied and have his brothers here to share it with him since he really couldn't get out.

But what's really made it bearable, has been the time his sweet girls have come over to entertain him! Mila and Ella are almost 9 months old and growing like crazy!!! Ella is full out crawling and can get anywhere she wants in a hurry! Mila is scooching and is a champ at getting into a sitting position totally unassisted, and they are both pulling up on everything! They are SO MUCH FUN! And absolutely adorable, as well!

Big girls! E, left; M, right


M in walker, E crawling underneath


So cute it's scary! E, left; M, right


Mila unhappy about sharing HER Papa!


Good news throughout all of this is that when he went for his scheduled check up with his hematologist/oncologist; his coagulation level continues to remain stable. Thank you, Father!!!!

So there ya have it!
Christie

"My prayer is not that You take them out of the world but that You protect them from the evil one." John 17:15

Remembering - Pray FERVENTLY, Believing!

Sunday, November 4, 2007 is forever etched on our hearts. This was the title to our e-mail update sent out November 5. We've come a long way, yet still so far to go.

If you'd like to reflect on God's faithfulness with us, read the following link:

http://nordellnotes.blogspot.com/2007/11/pray-ferventlybelieving.html


And check out this great music video that really speaks to me (or if you'd rather, the words are below)
http://www.youtube.com/watch?v=mfWAG-bnttQ&feature=related

BEFORE THE MORNING LYRICS - JOSH WILSON
Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good for those who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain that you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

We made it!

Thank you for your prayers; we made it through the weekend with no emergency trips to Presby!



Monday's labs show Ron is definitely dehydrated. Today, we had lactated ringers (IV solution that supplies water and electorlytes) and pole delivered to the house. I immediately received phone instructions on how to administer and we got him set up to run fluids through over a four hour period. We'lll do this each afternoon for the next three days. Praise God, he says he can already tell a little difference after just one liter.



Please pray for our sweet daughter-in-love, Stacee, and her family. Ryan, Stacee and the girls have been in Flordia for the last week visiting her mom, Diana, and step-dad, Jack. They were due to fly home this morning but late last night Jack began experiencing intense chest pain; long story short they found he had a torn aorta. They performed emergency surgery, however, he went into cardiac arrest and died this morning. This was very unexpected and, as you can imagine, has left everyone in shock.



I'm so thankful Stacee was there and had these last few days with Jack. Please pray especially for Stacee's mom, Jack's older daughter, as well as his grandchildren and great-grandchild. This is an especially hard blow in that Jack's son had died unexpectantly in a drowning accident about 6 weeks ago. Stacee's family is having a difficult time understanding why God would do something like this. And for Stacee as she continues to boldly share her comfort and peace in Christ during this difficult time.

And so the journey began...

Three years ago yesterday (10-9-07), our journey began with a "simple" gall bladder surgery. Though the path is often treacherous and we can't see around the next bend, we rest in knowing God goes before us and prepares the way. He sees far beyond what we can see and we can trust both our earthly and eternal future to Him.

Where we are now:

We've been battling all weekend to keep Ron out of the hospital. He's teetering on the edge of dehydration, which in most cases can be addressed with increased intake of fluids, but in Ron's case is much more complicated. Due to his continued digestive issues, we have to cautiously address this in small increments because the more he takes in, the more prone he is to throw up which leads to further dehydration; causing a vicious cycle. And because he is on IV nutrition (TPN), receiving all of his nutrients, minerals, vitamins, electrolytes, etc. in a very controlled, artificial manner, we must also be very careful as to what he does take in as well as the amount....most of us need increased electrolytes, sodium and potassium when dehydrated; he does as well, but in his case, too much increase in these can tip the delicate balance and bring on severe complications.

Praise God for our fabulous Dr. A who has been in contact with us throughout the weekend (even though he is not on call this weekend...yes, he is THE BEST!) We've been able to nurse him along, avoiding a frustrating weekend in the hospital. We'll see what tomorrow holds.

Our pastor has been doing an awesome series titled "Why Church?" Why is it important to be a part of a growing, Christ-focused community of believers. He invited us to do a video interview sharing our story of God's faithfulness to His people and the joy we can have in Him in all circumstances of life. And let me just tell you, never take for granted the privilege of being a part of such a church; as well as the ability to go to church each week. We have spent so much time over the last three years unable to receive instruction from our Godly leaders, unable to worship and fellowship with our church family; yet they have been so faithful to hold us up, encourage us, and even support us financially. Thank you NRHBC family!

Back to this weekend:

I truly believe we have been under attack by the enemy who hates when God's people shares His greatness; His faithfulness with others. We've had more than just Ron's medical event thrown at us this weekend.

We received a call from Ron's mom's doctor informing us they believe her health is declining and suggesting the family meet with a social worker to initiate hospice services. Though Ron had been with her last Friday, he really felt the need to go see her despite his current medical state...not a huge deal in that it's less than a 1/2 hour away, however, this little venture served to push him to the edge.

Saturday brought on electrical issues...seems our 30 year old electrical system spontaneously fried the main breaker causing us to be without electricity for a while. Our electrician came out on Saturday and it will require more work on Monday. We're praying things will be resolved quickly, however due to the fact our system is so old and a type that is no longer legal to install; the particular type of replacement we need may be hard to come by.

Despite all these little annoyances; we praise God we are home and not in the hospital.

Please join us in praying for:
definitive direction as to how to treat Ron's current medical status
peace for the family as decisions are made regarding Mom Nordell's care
a quick (and inexpensive) resolution to our electrical issue
but mostly...that we will walk in a manner worthy of His call, so that our journey will be used to His glory!

Was reading last night in Acts 16. Verse 25 reminded me that we are to choose to praise God regardless of our circumstances. If Paul and Silas could praise and sing hymns to God after having been beaten and while confined in prison with their feet fastened in stocks, we can certainly choose to praise Him in our storms. This is our desire!

Much love,
Christie

Time to Regroup

Where to begin?

You know the old saying "don't judge a book by it's cover". Well, that fits Ron well. Outwardly, he looks good, however if you look inside, you'd know how awful it really is the majority of the time. And how depressing it is to deal with this day after day after day!

The last couple of months have been quite the roller coaster...the highs of promising new ideas and the lows of hopes being dashed.

My sweet hubby has had some especially "dark days". I am so proud of my guy....it takes alot for him to come out and say, look things aren't going well and I'm really struggling here. He's not a complainer; and if you ask how he's doing he will typically say ok. The disappointment of hopeful changes, along with the increased mental fatigue from resuming classes, resulted in even more physical fatigue which really did a number on him. After much prayer and conferring with doctor, decision was made to step back and regroup.

You know how you feel when you have the worst flu ever...you can hardly function, you feel like you're in a mental fog, unable to focus on anything, you have no appetite and are just bone weary...well that's what he's been experiencing. And with the exceptional fatigue he's experiencing, he's definitely been regressing...feeling weak and rundown; no appetite, stomach churning along with nausea all day every day

He admits his number one priority needs to be on getting healthy but has been at a loss as to know how to go about this. After much prayer and conferring with doctor, they agreed it would be best if he dropped his classes this semester.

Right now, the overriding concern is his lack of sleep. Poor guy deals with so much reflux he gets no rest because he wakes up all night long choking. He can't take any kind of a sleep aid as this would dampen the automatic reflex to protect his airway (gagging/choking, then bolting to an upright position to keep things from coming up). If this reflex were to be dampened, he would aspirate with the potential of developing pneumonia or even literally suffocating due to blocked airway. Remember, due to a myriad of surgeries, procedures, etc. the flap between the esophagus and the stomach that should close to keep backflow from occurring is permanently open for him.

As of last Thursday, Ron has discontinued the latest medication and has backed off on eating (other than the fabulous fajitas at an anniversary celebration for some good friends today!) to see if he can get a little bit of a break. Although the new medication has helped a little, he may yak daily for 4-5 days and then have a break for a couple of days; the side effects have been troublesome.

So, there ya have it....may be more information than you'd like; but please use it as intended; to know how to specifically pray.

I've been listening to Beth Moore recently as she has been speaking on Isaiah 32:2 :

"Each man will be like a shelter from the wind and a refuge from the storm, like streams of water in the desert and the shadow of a great rock in a thirsty land"

And my thoughts turn to each of you. Thank you for loving us; as well as your willingness to stand in the gap and be a refuge to us during this stormy time of life.

Much love,
Christie

Long time no update...

...I know; but since I've started back to school (August 16) I feel I meet myself coming and going.
Ron's classes began last Monday. He is taking Algebra and English Lit and already the work is consuming a great deal of his time. It's been difficult for both of us to get back into the swing of things; actually, I'm not quite sure we're there yet!

Praise God for this three-day weekend! I took full advantage of the cooler weather to get some much-needed yard work done including trimming the shrubs; seeing this in type doesn't sound like much, but I tell ya, it was a beating! My right arm still feels like it's vibrating from the hedge trimmer and I have sore muscles in places that I never knew muscles existed! I was quite the taskmaster and even made Ron get out and help pick up the trimmings...poor guy, it wore him out!

But the highlight of the holiday was getting to spend time with our sweet girls. Oh, how we miss being with them on a regular basis!

On to the news I know you all really want...how is Ron doing? Well, we're excited to say his blood levels are staying consistent on the IV Lovenox and were just told last week that he can now go to anti-factor Xa checks every 6 weeks, yippee!!!! Even though he still has to have blood draws every 2 weeks to keep an eye on all other levels for TPN purposes; this is an encouraging step.

The new medication he began Aug 11 has helped some; he has gone a couple of different times for 5 days without yakking. WOO HOO!!! Unfortunately, this is usually followed by a spell of 3 or 4 days in a row of daily yakking. Very frustrating to him seeing as how there are no variables on the days he does or doesn't yak. It wouldn't be quite so discouraging if we could put a finger on what makes the difference. The trade off is the side effects from the medication. It leaves him feeling weaker, more lethargic than usual. We continue to remain hopeful and will take any good day we get.

We're constantly asked what we need...really, can't think of anything other than your continued prayer support and encouragement.

Specific things to pray for:

• longer stretches of time with no yakking; this is the only way his esophagus will heal
  
• increased strength and stamina
  
• consistent, dedicated time in prayer and Bible study; as life gets busy, this becomes the first thing to be neglected
  
• for my attitude; as I adjust to being back at work along with all the other responsibilities of being the primary caregiver and head of household duties; when I'm tired, I can get quite grumpy and say things I wish I could take back. For instance, after an extremely long week trying to juggle work, home, etc. I was frustrated with it all and blurted out "I want my husband back" Oh, how I wish I could take back those words! They were very hurtful and left Ron in quite a funk for a couple of days. I know he badly wishes to be his old self and would give anything to be able to do the things he used to do (even mundane household jobs) and to have me voice this was absolutely awful! Pray I will keep my tongue in check and when I'm feeling overwhelmed, I will vent to someone (anyone!) else.
  (I'm sure I must have burst a few bubbles here, I know most of you think I'm so sweet, kind, compassionate,...but I tell ya, God sees my heart and knows what I'm really all about. What? No burst bubbles? Was it just my wishful thinking that someone thought I was all these good things? Haha)
  
• And the biggie....as the new school year begins, so does our new insurance year... which means starting over with meeting all new deductibles, as well as increase in our premiums and increase in all co-pays. We know we'll have all Ron's maintenance medications, TPN and routine blood draws, but an otherwise a medically uneventful year would be fabulous!
  

So there you have it; the good, the bad and the ugly. It's humbling (and often embarrassing) to be so transparent but know this is what God has called us to and anything less would be lack of obedience on our part. Thanks for loving us in spite of who we really are!

Much love,
Christie


"And God will generously provide all you need. Then you will always have everything you need and plenty left over to share with others." 2 Cor 9:8 NLT

"What's more, I will be with you and will protect you wherever you go...I will be with you constantly until I have finished giving you everything I have promised." Genesis 28:15 NLT

"I said to the Lord, 'You are my Lord; apart from You I have no good thing' " Psalm 16:2 NIV

Half Year Birthday!

Is it really possible? Yes, our sweet girls are 6 months old today!

The pictures below were actually taken at 5 months, but I tell ya they just keep getting cuter and more fun by the day!

Sweet Ella~

The Divine Miss M~

Double the blessings! Double the fun!

I may be a little biased...but aren't they the most adorable things you've ever seen????

Plan B

I'm sad to report the increase in the new medication did nothing but cause Ron to sleep...ALOT! Poor guy was totally out of it, sleeping off and on in his recliner throughout each day (even though he had slept 12-14 hours the night before!) Yet the daily yakking continues. Dr. A had him discontinue the Baclofen Monday afternoon, however he will continue to take the Gaviscon (seaweed-based antacid), along with his other maintenance medications.

Today began Plan B; a medication named Bethanechol. Bethanechol is typically used for treatment of urinary issues; however, is also found to stimulate the GI tract to increase motility. Dr. A also says it may cause confusion, bladder spasms, muscle spasms, as well as a host of other COMMON side effects. He really wanted Ron to start on it while I am still on summer break so I can keep an eye on him. YEEHAW!

I'd be lying to say we weren't disappointed in the lack of any progression while on the Baclofen; however, we remain confident in our belief that God does indeed have a plan, and He IS at work as we expectantly wait.

Christie