Tuesday, March 31, 2009
All in all, a successful adventure for today. And, I'm thrilled to hand over the keys. I like to drive, really, I do. But, I also like to stare out the window at houses, architecture and the landscape and frankly, driving really gets in the way of that.
Next mission, see if Ben can get in to his tiny little Civic. That should be fun to watch ;)
Monday, March 30, 2009
So the offical report is that his liver levels came down even more over the past week, his wound is looking beautiful and the surgeon is very pleased with his progress. As of today, he's officially off of the insulin, no longer even has to test his blood sugar and he's been taken off of the blood pressure medication. And he can drive again. Well, as long as he's not taking the pain meds which isn't nearly as often now.
Keep in mind that he's only 29 days post transplant. Twenty. Nine. Days. It's amazing what a fully functioning liver can do for a person. And I think Ben deserves a lot of credit too. He's worked very hard, even the months before the transplant, to try to ensure the best outcome for himself. It's definately paying off. I'm so proud of him and I can't wait to see the strides he makes this week :)
Saturday, March 28, 2009
It's such an impossible situation, to know that while we celebrated, another family grieved . . .
Tuesday, March 24, 2009
The good news is that even if you're suddenly diabetic after your transplant, it's often a short term thing. This is the case for Ben. While he was in the ICU, his blood sugar levels were sometimes in the 250-260 range. Up to 150 is acceptable so he was way up there. Now he's down to the 70-100 range. Yesterday his nightly dose of long acting insulin was lowered to 10 units to taper him off. He started off at 30 units, then was dropped to 20. Next week he'll go off of it completely and the following week he can stop testing all together. Of course, this is assuming that his blood sugar levels stay within the range the doctors want which all indications are that they will.
Monday, March 23, 2009
Also, they agreed that he could lower his blood pressure med dose and he's down to just 10 units of Lantus (a long acting insulin) a night with a plan to get him off of it completely next week and then if his blood sugar levels remain under 150, Ben can even stop testing four times a day. Progress, progress, progress! Of course, he's still on nine or ten other meds each day but he's working on getting off of some of those too.
The last great news was that the surgeon feels that Ben's wound is healing well and the wound vac is doing exactly what it needs to be doing. The very best thing of all though is that Ben is no longer a twice a week clinic patient :) He's down to once a week. Don't get me wrong, clinic is a wonderful thing. However, it truely is the only thing you manage to accomplish on those days. No eating or drinking after midnight, then up at 5:45 a.m., to the hospital lab by 7 a.m., then wait around for a while until you're called in to the clinic for vitals and then everyone goes to eat breakfast and take meds and then it's back to the clinic waiting area by 9:30 a.m. where the patients are called in a few at a time to see the surgeons so your wait could be 10 minutes, or it could be an hour and a half. For instance, today we got done at noon, so five hours in the hospital. That's a lot to ask of a healthy person, let alone someone that's been through a transplant.
So, all in all, it was a great day, full of great news. That is, until you get us started about the insurance and their blatent lies about one of Ben's meds. In the interest of my blood pressure ;), I'll leave that story for another day. Just watch out if you use Caremark/CVS. They will lie, provide false information and generally give you the run-a-round to avoid filling expensive prescriptions. We'll see if they redeem themselves over the next 24 hours.
Friday, March 20, 2009
Thursday, March 19, 2009
After the procedure, they'll admit him, we're assuming just for a day (good grief, please let it be for just a day) and then it's back on the road to recovery. If there is a narrowing, it can be corrected with stents so at this point, it looks like whatever they find is fixable. Ben will just have to get used to having a catheter on his side for a few months, I can't imagine that it is any worse than the huge, gaping wound on his belly. So, let's all hope that there are no other complications to be found and tomorrow is an utterly boring day otherwise.
OH! And the other news, is that Ben's infection is gone and in the words of one of the surgeons, his wound looks "red and beefy". One battle down, a few more to go :)
Monday, March 16, 2009
After sitting around and waiting all morning, there was a lot of progress made this afternoon. They removed most of his staples to allow the wound to close from the inside out and I'm now able to boast that I have seen the insides of my husband and have the pictures (of course) to prove it. I'll spare you the rest of the details and again, no photos, but I'll just say Ben probably weighs 5 pounds less with all the gunk that poured out of him today. And, he even got some fat trimmed out of him because the wound nurse said it was in her way. How do you like that? A new liver and a tummy tuck all in one. And even though he's basically vacuum sealed for freshness, he's still feeling well enough to get up and do his hallway laps. My husband ROCKS :)
So, we're keeping this in perspective. One tiny set back in the grand scheme of things. And most importantly, it was all caught early and with the wound vac, his incision should heal about 50% faster. Why they don't just put one on to begin with is beyond me.
Saturday, March 14, 2009
They also started Ben on an antibiotic and they're monitoring his vitals. Right now the infection is still localized so it's nothing to be too worked up about but it's definately something that needed taking care of and it probably would have gotten worse over the weekend. It seems that we caught it early so let's all hope that it clears up fast. If it also makes the wound heal faster, all the better.
And of course I had to snap a picture of Ben's lovely vacuum sealed belly. The black stuff is the outer foam and the tube runs from an open spot in his wound to the machine that collects the gunk. I'll spare you the "before" picture ;)
Friday, March 13, 2009
I walked in to his ICU room on Monday morning and he was in the bed, tubes all over the place, in both arms, up his nose, down his throat, a port in his neck with six lines running out of it, not to mention the tubes covered by his blankets. Monitors were beeping and there was that awful sound of the breathing machine. His eye lashes were still caked with stuff from taping them shut during surgery, he had iodine spots left on him, and the Ben I know and love was no where to be found in that room. The ultrasound tech was doing a scan on him, searching for signs of another blood clot in the new liver. If one was found, he'd have to be taken back down to surgery and opened back up. As she was doing the scan, I found one clear spot on his hand and wrapped my finger around one of his. I did our "I love you" squeeze and got nothing back. His hands were twitching, a side effect of all of the meds they were pumping him full of and he was gagging on the breathing tube. I don't know how I held it together standing there. I've never been so sad and so scared and felt so lost and helpless in my life. There was nothing I could do to protect him from this and nothing I could do to protect "J" if he didn't live through this. We have to believe that things will work out and people will recover but I'm all too aware that not everyone's story ends happily.
So thankfully, that morning was the worst. Ben would argue with that point I'm sure. He'd say "no, the days full of so much pain were the worst." But he didn't see what I saw. And so now, when I look at him snuggled up on the couch while I'm washing the billions of dishes that he and "J" have used in the past 24 hours I'm so thrilled. He's alive. He's here. He came back from an incredible journey. And at this moment, I have everything I need.
Thursday, March 12, 2009
But, that's enough of "Infection Chat" because the really big news is that "J" lost her first tooth last night. Technically, I pulled it out but it was barely hanging in there anyway. So the Tooth Fairy has been alerted and tonight she'll be delivering some cash, a bottle of anti-cavity mouthwash and two new shiney Batman toothbrushes (yes, "J" is a girl however she's so not in to the whole Princess thing). Around here the Tooth Fairy makes a pretty big deal out of the first tooth. The goodies lessen with the rest of the teeth though. Wouldn't want to encourage her to be pulling out teeth just to make some cash.
So that's the news for today. Thanks everyone for dropping by to see how life's going around here :)
Tuesday, March 10, 2009
He's doing really well except for he's in an ton of pain. One look at his wound and you can tell why he's hurting so much. Infact, it's so stomach turning to look at, I'm not even posting a picture of it. Just trust me, it's a funky mess right now.
So for those of you that like little tidbits of info, here's some interesting facts;
*Ben's taking 30+ pills a day right now, plus daily long lasting insulin and occasionally fast acting insulin based on meal time blood sugar tests.
*He has to avoid outside visitors for now. Since he's still healing, he has a higher risk of catching something plus it would be miserable to catch a cold right now. If anyone wants to e-mail a message to him, you can do so to "eleven272008 at gmail dot com".
*Ben is almost flesh color again vs. the lovely yellow glow that jaundice gives you. I had no idea how jaundice he was all along. Honestly, I've never seen his forearms the color that they are now.
*Twice a week he has to show up for liver clinic at 7 a.m. at the hospital. This should only be for a few weeks, then he'll go once a week for a while, then once every other week, once a month, etc. depending on how he's progressing.
*He can't go barefoot outside or garden without gloves for the rest of his life. And no changing the litter box.
*He has to eat a ton of protein every day to help heal his incision. This is testing my cooking skills since I'm a 20 year vegetarian. I'm still a little shocked that I managed to fix him a cheeseburger that he said was good. The things we do for love :)
*Ben's post transplant hospital stay was 7 days. The norm is 8-10 days. Go Ben!
*The only thing we know about the donor was that they were 44 years old. No idea if they were male or female, what area they were in, or how they passed away. At some point, we can write a letter to the family. I don't think we're ready to do that just yet. It's an incredibly emotional process and I want to wait until the right time. I'm not sure if they'd be ready to read a letter just yet either.
So that's the update for now. I'm so far past tired and Ben is too but at the same time, we are so very thankful. It's hard to complain too much when not everyone gets to come home so fast or does so well post transplant. Once Ben's pain level is better (which it seems to be improving over the past 12 hours), it will be interesting to see the changes and improvements that come along each day. It's amazing to witness the healing that we are capable of. It's like watching a miracle.
Sunday, March 8, 2009
Friday, March 6, 2009
The winner gets a . . . well, frankly you get nothing. But come on, sometimes isn't it just about playing and not winning?
On a related note, we keep getting different estimates of release dates. The latest being Tues. or Wed. next week. I'll just wait until he's in the car and we're half way home and then I'll worry about when they're sending him home. Anyway, that means you have plenty of time to come up with your guesses ;)
Thursday, March 5, 2009
Now they're talking about letting him come home either this weekend or Monday. I'm so far past happy right now. Giddy, thrilled, joyful, etc. don't even come close to summing it up.
I guess I'm just waiting. Holding my breath so I don't get blindsided by something. I can't wait until he's given the all clear and we can bring him home.
When he's next to me again, I'll breathe . . .
Wednesday, March 4, 2009
Ben says that the pain is a 9 on a scale of 1-10 but I imagine that without the pain med, it would be a 15. Hopefully the pain will subside a bit in the coming hours and he can get some much needed rest.
Also he's been having some hallucinations as a side effect of all of the new meds they're pumping him full of. We knew it would happen but I'm sure it's still bugging Ben to be going though it. Especially since most of the hallucinations are of people he doesn't know being in his room. We've heard that some patients get really paranoid as a result of the all the meds. Hopefully Ben will get to skip over that side effect.
Other than that though, he's doing pretty well :)
Tuesday, March 3, 2009
We had been warned that often you're called in once or twice before it really is a match. We had prepared for the call to come in the middle of the night, or while Ben was at work, but instead it came while we were all together, on a day where everyone was off work, just a few hours after we'd been goofing off with the camera, taking silly family portraits, on a day where Ben had said that he was feeling great and had lots of energy. It came just days after I had paid all the bills ahead, done extra grocery shopping and cleaned the house. It came on a day where despite having 50 shirts to pick from, Ben had decided to wear his lucky Ft. Myers t-shirt, the shirt that had become his uniform for medical procedure and testing days.
I'll post the rest of the story over the next few days. For now, here's some pictures. They tell the story better then I could anyway.
Ben and our sweet girl in the ER. Ben was about to have blood drawn, a chest x-ray, an EKG and vitals taken.
Waiting in the pre-transplant area. Ben had the entire place to himself. Which was fine since he ended being in there until around noon on Sunday.
And now, to understand how truely sick Ben was, here's his liver. This image will be a constant reminder of why Ben decided to go through this painful process. When I first saw this, I was amazed, and still am. He was still working full-time, still playing with our daughter, still helping out around the house, still so very much himself.
And finally, the most beautiful scar in the world. It will always be a reminder of the amazing gift Ben was given by a family that will never know him, a family that in their most painful days, made an incredible choice. I wish that I could tell them that their gift will not be wasted. That they gave a wife her husband back, a daughter her daddy back, a brother his sibling back, and to an incredible set of parents, their son back.
So that's it for now. Ben's back off to surgery in the morning to close up his muscle layer. I'll update more when he gets through this next stage.