12/12/10

Ah, the weekend

Posted Dec 12, 2010 1:48am

Today was a pretty sleepy day around the Pennington household. I woke up early enough, but stayed in bed for a while. Joe had somehow found his way into the bed last night, and felt pretty darn comfy snuggled up to me.
He's got a bit of a cold, and he tends to be more snuggly when he doesn't feel well. Of course, when someone is sick in the house, they stick pretty close to me, since Walt really shouldn't be exposed to any germs. We've been very lucky so far. I must admit that we do have hand-sanitizing stations strategically placed throughout the house. We normally mask up if someone has a cough or sniffle.

I can tell Walt's creatinine is rising as he sleeps a lot when both that and his BUN are elevated. He spent a good part of the day in the recliner, and I'll give him some slack for now, but next week, all bets are off. Back to work no excuses :o)

We did start the day cleaning, and when I say cleaning I mean we picked up yesterday's mess. By no means do I mean we scrubbed toilets, mopped floors or anything like that. There is just not enough energy for any of that right now. I figure we have the rest of this year to clean, heck we can take next year too. Not a priority for me.

Kasie continues to be the mature little girl - helping her little brother as much as she can (when she's in the mood). She's so looking forward to Christmas, I can tell this will be the last year for her believing but the spirit of Christmas will live on in our house for many, many years.

We expect Brad (our oldest) to come back 'home' at the beginning of the year. He earned his 2-year pin and received accolades from the group he works with. He's noted as being on speed dial for most of the supervisors. His contract is up and it's time for him to use the scholarship money he's earned on college. I'm very proud of his accomplishments. He attributes most of his skills and leadership to the things his dad taught him. Now, to follow in Dad's footsteps and become a Firefighter. Dad will be proud.

We leave tomorrow afternoon for Sacramento since we have to be at the facility where they do this procedure at 7:30 am. We'll spend the night in a hotel close to there. I'm kind of looking forward to a quiet evening away, even if it does involve a procedure the next day. Leaving the house at 4:30am is never something I look forward to unless I'm driving to Disneyland.

Here's to another quiet day!!

Much love ~Susan

12/10/2010

Day 2 with no crisis!

Posted Dec 10, 2010 11:32pm

So, now it's the little things that make us happy again.

Another uneventful day except that Walt went to the endocrinologist today. He has medicine induced diabetes which makes it no less dangerous, but it's at least manageable. He was given the 24 hour insulin medicine and that should make it much easier to control too.
Somehow, I hope that once they fix the Pseudoaneurysm, that his glucose levels will be more easily managed, but we'll see.

I'll keep this short, as I seem to be really enjoying my sleep lately.

We will take every uneventful day we can get!

~Susan

12/10/10

uneventful day

Posted Dec 10, 2010 1:48am

Well, in the big scheme of things today was very uneventful at the Pennington house.

I got to work the whole day, we stayed pretty much on the property all day, in fact we didn't leave the 'hill' of what we call Magalia.

Joe and Kasie are both very happy to have us home to tuck them in, to be the ones who take them to school, drop them off, to have a family dinner - you know, all those things we take for granted.

Kasie has become quite the mature little girl through all this, she is showing patience that I have never seen before. Joe is showing the lovingness that he has always had inside, but now he knows how to communicate it in a way we can hear and see it. He was sitting on the couch earlier, watching TV before chores and homework. I sat down next to him an leaned in.. he reached up and kissed me on the lips and said "Mom, I really love you". Man, what a moment!

On that high note, I'm gonna slip in to bed and wish you all a great night.

~ Much love! Susan

12/9/2010

A note of thanks

Posted Dec 9, 2010 12:29am

Just a quick check in before I pour myself into bed.

We are home for the night and hopefully until Sunday night when we head back to Sutter.

I wanted to take a minute to thank everyone who has supported us through all this. It's been a tough and long journey. Most of you have been there from the start and have never left our sides.

From the notes of encouragement, the endless time off from work, the dinners, the calls to check in, the offers of babysitting.... the list goes on. Every single one of you who is reading this page has made such an impact on our lives in the most positive way. If one of those links were broken, we would have never made it this far in as good of shape as we are. We have our weak days but with the amazing support of all you, those are far and few between.

Thanks to Walt for being the strong man that he is! He doesn't give up and does everything the doctors ask him to do. He follows his orders to the tee and he's so in tune to his own body that often times, when a regiment is changed, it's due to his interpretation of what's going on and his suggestions drive the changes.

I can't seem to respond to messages but know that we read all the notes and really, really appreciate them all!

Its off to bed for me
Love, Susan and Family

12/8/2010

procedure delay

Posted Dec 8, 2010 4:47pm

We were told that the procedure would be today @ 2pm but as it turns out, the procedure is more invasive than previously expected. The procedure itself is a 3 hours but the recovery time is 6 hours. This really makes sense since they are entering through the artery and mixing things up a bit.

So, it looks like one more trip back down here for a full day. Frustrating, but necessary.

One of the valuable things I have learned today is that Doctors make mistakes too. We think the original damage that was done to the kidney was the result of a very rough biopsy that was done a few weeks ago. Timing aligns as the Creatinine began to climb steadily since that biopsy. The other mistake is that the original ultrasound was thought to have no abnormalities. I began to get really frustrated at the miscue but then realized that it was good for us that it was misread. But, it really got me to thinking that we are all human and we all do make mistakes. It just always seems that when a doctor makes a mistake, it somehow is worse.

I can’t say enough about the doctors at Sutter Transplant. There was a crew of Nephrologists, Vascular Surgeons, Transplant Coordinators, and RNs all huddled in a room studying Walt’s condition (last night and this morning). We feel very honored and privileged to have such a group of people fighting for us.

So, for now we wait – to hear when the procedure is rescheduled.

I need a nap now

~Susan

We just got news that its scheduled for Monday @ 730 am

12/8/2010

procedure scheduled

Posted Dec 8, 2010 3:22pm

Please be patient as I am doing this update via my phone. Walt is scheduled for a procedure at 2pm pacific time. They found a pseudo aneurysm (but they spell I right). So they will be repairing it by placing a coil in the bad part, much like angioplasy (they spell that right too). Amyway I'll update as soon as we.have one.

12/8/2010

follow up ultrasound

Posted Dec 8, 2010 2:38am

I struggled trying to understand the events of the last few days today, Walt was pretty quiet. We had decided not use the "D" word and just refer to it as "treatment".

As I was leaving for my Dr. Appt today, I got a phone call from the transplant coordinator who met with a handful of vascular surgeons. The initial report from the ultrasound did indicate an AV fistula which is (for those of you who don't watch Grey's Anatomy) a joining or connection of and artery to a vein - it isn't supposed to do that. Anyhow, both Walt and I saw that on the report, Walt questioned it but I really didn't pay much attention because I know there is a graft of the renal artery and the renal vein in order for the new kidney to work. Having only some knowledge of the process really puts you at a disadvantage.
So the result of the possibility of the AV fistula is that there isn't sufficient blood getting to the kidney, it's just getting some of the blood and not able to clean it. The rest of the blood is bypassing the functional units within the kidney.

So we were asked to come back down to Sacramento tonight to do another more focused ultrasound to see what next steps are appropriate. If the fistula is confirmed, they will embolize the fistula; this will not require surgery but rather a procedure that is done within the Invasive Radiology department. The end result of all this is no "D" word and we're back in business.

Man this has been a heck of an E-ticket ride. The ups have been up, and the downs have been down.

We did tell Kasie what is going on, being 9 she knows something is wrong but doesn't understand it all. We didn't go into detail, but she now knows something more serious is happening. Joe, being 5 doesn't know much about what's going on, other than he gets to spend another night with Maria :o)

We should get results from the 2nd ultrasound around 9 or 10 tomorrow morning. I'll update then.

Now I think I'll turn into the comfy bed that has been calling my name since we checked into the hotel.

Sleep well, I certainly hope to!

~Susan