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.

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

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

It's here!!! Ron tells his story

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