Monday, September 7, 2009

He gives and takes away...

Busy, busy day here at Presby...although I did manage to sneak in a short nap!

Ron had new PICC line inserted, wound care, visits from 4 out of 5 docs (resident, surgeon, GI, infectious disease; didn't have to see IR) plus they added another specialist to the team bringing the total to 6 docs involved! New doc is hematologist/oncologist...since he has such a "unique" history they aren't quite sure how to handle him and blood thinners. It comes down to risks vs. benefits. Over the last 2 years he has had a multitude of blood clots which points to the need for blood thinners, the flip side of that is, he has also had multiple bleeds which is exacerbated by...you got it, blood thinners! You know my "AB"-normal husband, he delights in stumping all the specialists!

Which is the lesser of the two risks...blood clot or bleeds? It's a coin toss. However, medical protocol says if you've had a blood clot you should be on blood thinners; new doc conferred with surgeon, resident and interventional radiologist and confirms he needs to be on blood thinners to avoid the chance that remnants of the infected clot travel through his body spreading infection which could be fatal. Unfortunately, once again, Ron has to be difficult; because of all of his other issues with digestion, his body will not properly absorb oral blood thinners which means he will have to be on Lovenox injections (in his belly) indefinitely. And yes, this is the same medication that caused the huge hematoma (bleed) which required surgery last summer. Like I said, risks/benefits issue; blood clots are harder to see than bleeds at this point.

I was in the room during his dressing change today. It's crazy, I've seen much worse, had to take care of much worse, but today, I just couldn't take it. I was ok when they removed the packing and cleansed the wound, but once they started packing it again and I saw how painful it was for him, I had to leave. I knew I needed to be watching in case I have to take this on when we go home, but I just couldn't do it. I know if it comes down to it, God will give me the strength I need. Until, then I'll just keep praying. I don't want wound care to be the only obstacle to keep him from going home.

Speaking of which, It sounds like everyone is on board with him going home tomorrow, although wound care has not been addressed as yet. Ron and I both feel we need to push for a wound care nurse to come out and do daily dressing change but we aren't sure how that will work. Typically, home health care will come out and teach the family how to do dressing changes so we'll see if insurance balks at this or not.

The last 2 nights we have gone on very long walks, indoors through the "link" at Presbyterian which takes you underground to the two other medical buildings, Perot and Jackson. Tonight, they were waxing the floors in the main area so we decided to take our own detour and explore a little...we found the morgue. Always wondered where it was...of course, it's in a very creepy out of the way area. I guess it wouldn't be wise to put it somewhere that people pass by on a regular basis, might freak them out...but we are not faint of heart, we go looking for it!!!!

This last little Presby "vacation" has been an eye-opener. Bottom line...no matter how much we try to deny or ignore the fact; I have a very medically fragile husband. Even though things have gone very well over the last few months, there are issues we will always have to deal with and because his body has gone through so much to be only 51 years old it's not to be unexpected. And it's hard...to think of going through these kinds of issues over and over again. Don't get me wrong, we know how blessed we are and we cannot begin to count the miracles he has granted in all of this. But it's still hard.

A very wise friend shared what God was speaking to her as she prayed for us and gave us permission to pass it on. Her words were right on target and correlated so well with what God has been speaking to me these past few days.

"I was asking God why you guys were having to go through all this again. It is so frustrating to me that Ron has been doing well all this time and then he has had this setback. God reminded me of what happened in the end of Jonah when he caused the vine to grow to give Jonah shade and Jonah was happy, but then the vine withered and Jonah was mad. God asked him if he had any right to be mad about that. It reminded me that if I am going to praise God for the success and the health Ron has had the past four months, then I can't get upset about whatever else He brings or allows. I can't see His plan, but I know He's still the same God, who gives and takes away. "
Thanks, sweet Ashley for sharing this with us!

I've been reading in Romans and a couple of verses just really jumped out at me:

"Nothing shall be able to separate us from the love of God which is in Christ Jesus." Romans 8:39

I confess, there are days when I think, if you love us, Father, why do we continually have to struggle? Why don't You allow our path to be smooth and straight, instead of encountering these hairpin twists and turns? We know Your word says in this world we will have trouble, but there are times we feel we've had more than our share! We want to be faithful, we want to be strong, we want to trust You in all things...Yet, Father, sometimes we are just so tired...

"He is God who rules over everything and is worthy of eternal praise." Romans 9:5b

Knowing Your word is true, we will choose to trust You; we will choose to rely on Your faith and Your strength to be enough for today.

Good night! Hope you've enjoyed your long weekend!
Love,
Christie

PS: Yes, I have been staying at Hotel Presby the last couple of days...God graciously provided some extra income for me earlier this week in a way I wasn't anticipating which I've been able to use to pay for my room (since they continue to bless us by only charging the long term rate whenever we're here! Less than 1/2 the cost of a typical room stay!)

So many wonderful benefits of this arrangement:
allows me to sleep better at night knowing Ron's just 3 floors down if anything should happen
keeps me from being exhausted from trekking back and forth
I didn't have to worry about driving home late Friday night after waiting til midnight to see if he was having surgery immediately after doctor did midnight check of infection site
I didn't have to get up at 5 to be here by 7 for surgery on Saturday morn
I can be here when docs come around, no matter what time that may be
And, most importantly, I'm able to keep my sweet hubby company!

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