Tuesday, September 29, 2009

We Now Return To Your Regularly Scheduled Blog

OK, I know these things are only useful if they're kept up, and I apologize for the delay, but things have been pretty hectic. Rest assured all is well. Greg did get out of the hospital on Friday 9/19, but not until well after 8 p.m., so we didn't get home 'til about 1 a.m. Saturday. He was VERY weak, and Saturday was pretty much the day from hell. We'll spare all the gory details, as he's much better now. He's still weak, and using a walker, but he gets stronger every day. He has trouble getting up from a sitting position, and can't drive yet. But, we now have Home Health services, and he gets PT, OT and a nurse coming to the house. For being home-bound, he's kept pretty busy, and its working well. He gets stronger every day. We hope to have him driving again and fully self-sufficient in a few weeks. We're back in St. Louis today, for a check up. Things went really well. Just before he was discharged on the 19th, he had his 100-day bone marrow biopsy. We just got the results. He has 100% donor marrow (meaning he grafted) AND, more importantly, he has no sign of either the multiple myeloma or the MDS! That's wonderful news. Its as good as anyone could hope for. Doc was very pleased, and we are ecstatic. His lab values were good, too, but he just missed the cutoff for platelets, so we're in the treatment center now waiting for some. We could be here for hours. But, its well worth the wait.

On the home front, we were in St. Louis for the weekend watching the Packers beat the Rams. Logistically, it was a nightmare getting to the stadium, but once we got inside, Guest Services was wonderful. They exchanged 2 of our tickets for the wheelchair section (very near where our other seats were), got Greg a wheelchair, wheeled him to his seat, picked him up after the game, wheeled him out & got him a taxi. Then, after we left our hotel, we sat in traffic for 2 hours in downtown St. Louis trying to get on the freeway. And, we had a 1 hour delay in Rolla. But, it was all worth it to see the Pack beat the Rams.


But, more important than even the Packers (I know, its hard to believe) is that the Spitfire is loaded on a transport trailer and on its way to our front door. They picked it up at Skibby’s house Sunday night. We haven’t heard a delivery time yet, but should be getting it by the end of the week. We’re really excited. Greg has to work really hard on his PT so he can get in and out of it. Right now, I don’t think he’ll have a problem getting in, but there’s no way he can get out. This gives him good incentive to do his exercises.


Thanks to all for the great help you’ve given us over the past few weeks. I hesitate to mention anyone, for fear of leaving someone out, but special thanks to Steg for mowing the lawn (your good deed has not gone unnoticed!), the Brincks and the Coalsons for helping so much with Matthew, and, as always, the Wherley’s and the Altoonians for always being there for us and for listening to me bitch when I need to.


Thanks for the prayers – keep ‘em coming! They’re working.
 
Love,
Greg & Ann

Wednesday, September 16, 2009

Getting Closer

The scoop I got last night was that today (Wednesday) is going to be the last day of IV antibiotics, and they're going to start him on all oral meds Thursday. If he does well, I might be able to take him home Friday (keep your fingers crossed!). He's getting a little stronger, but is using a walker to get around right now. He also can't get his shoes on -- they put 20 + pounds of water on him in 1 week with all the IV meds. Can we work the word Lassix into a Blues tune?

I'm going up Friday morning, and hopefully will be bringing him home Friday night -- or Saturday at the latest. I'll keep everyone posted as things change.

Thanks for all the prayers. Keep 'em coming!

Saturday, September 12, 2009

Another Week

Greg continues to improve, but the docs say he'll be here about one more week. He's still really weak. He can't stand up by himself, although he can shuffle along a little once he's up. All the blood tests are looking OK, although Our Hero did decide to start running a low-grade fever as of last night. They don't have a cause yet (or even a working theory), but no one seems too terribly concerned about it right now. He's been receiving every antibiotic known to man for the last 2 weeks, so he's covered. I'm here for the weekend, but plan to go back home tomorrow. We've been watching football, but Greg managed to sleep through most of the Wisconsin game. It was that kind of game. In an effort to give him incentive to do his exercises to get home, I bought him a get-well present:


Its a 1977 Triumph Spitfire. I bought it off e-bay, and its in Menasha, Wisconsin. The seller offered to drive it to Greg's sister's in Madison. After that, we'll figure out how to get it here. I wanted a red one, but none were available. Not exactly a practical family vehicle, but, what the heck -- he's always wanted one. Its a little more sporty than the mini-van. Needless to say, Eric is pretty excited, too.
Other than that, there's not much to report on the medical front. Just waiting for him to get stronger. This illness really knocked him for a loop. But, he's recovering, which is the most important. I'll update mid-week.
Thanks to all, especially Tom & Julie for dinner Thursday and taking care of Matthew for the weekend. I really don't know what I'd do without you guys!
Love,
Ann & Greg








Tuesday, September 8, 2009

Improvement

Sorry for the delay. I just haven't had the energy to post over the weekend.

Greg has improved. The bowel obstruction cleared and they took the NG tube out yesterday. He got to have Jello. There's always room for Jello, right? Unfortunately, they don't make pizza flavored. As of this morning, his lungs sound much clearer, and the two blood infections he had going are culturing negative, meaning they appear to be under control. He's really weak right now, and can't get out of bed. They've called in a physical therapy consult to start working with him to get his strength back.

I came home late Sunday to be with the boys, and plan to head back later this week. I'm taking it day by day. Now it seems to be a matter of Greg getting his strength back. I can't see him being discharged until early next week, although he says he's coming home end of the week or over the weekend. I think they're going to want him to be able to walk, first. Just a hunch.

On a lighter note, I did manage to get to the Greek Orthodox Church across the street from the hospital on Saturday. They were having Greek Fest, which consisted of 85% food, 10% gift shop, and 5% music. Lots of big men with hairy arms and lots of facial hair named Nick cooking large chunks of animals over an open fire. The food was spectacular, although I didn't get to eat as much as I would have liked. Did I mention the pastry? Out of this world. I bought the church cookbook, and I'm happy to report that I've read the whole thing, and not one single recipe calls for Jello, Cool Whip or instant pudding mix. I didn't know you could publish a church cookbook without those standard ingredients.

Thanks to all for your support, once again. Special thanks to Steg for mowing the lawn, and to the Brincks for adopting my youngest. Of course, with the red hair, he just blended right in. He had a great time, and I can't thank you enough.

I'll post more when I know something. Until then,

Love,

Greg & Ann

Saturday, September 5, 2009

Waiting

I know a lot of you are waiting for updates, but there's not a whole lot to report. We continue to wait for the bowel obstruction to clear. It just a waiting game. They've removed a LOT of yuk from his system through the tube in his nose (I lost count at about 8 liters as of yesterday). The way they explained it to me is that your intestines are constantly moving around, and Greg got a "kink" in his -- like getting a kink in the garden hose. Through rest, fluids and relieving the pressure in his system via the nose thing, they hope his will un-kink. That's as medically accurate as I can get.

He's got a couple of other problems, though, too. He's got pneumonia, and his blood cultures grew 2 bugs. Don't ask me what they were -- I had never heard of them before. However, he's covered with antibiotics, and now they know which ones he specifically needs. He was up all night with a HORRIBLE cough, and is finally resting now, after they gave him some robitussin. The pneumonia and bowel obstruction both appear to be linked to the GVHD. The blood infections are due to a really low white count.


They're still telling me he's pretty sick, but slowly getting better. I don't think I've seen him this sick in a long time. Hopefully the bowel thing will clear in the next day or so. He's starting to feel a little hungry, which is a good sign, although he still can't have anything to eat. I'm hoping he feels well enough to watch Alabama beat Va Tech later today (Sorry, Tom).

Special thanks to the Brincks for keeping Matthew and keeping him busy. I promise he eventually does stop talking -- however, its usually while he's sleeping. I just hope he's not telling you too many family secrets.

Eric seems to be too busy to worry, which is probably good. This is his last weekend of work, and the swim team is in full swing. He had a meet last night, and was pleased with his performance. Hockey should be starting soon.

Thanks to all for the prayers. Once again, they're the best thing you can do at this point. I promise I'll post when something happens, but no news means pretty much no news. Just watching and waiting.......

Love,

Greg & Ann

Thursday, September 3, 2009

Aerial View

If its Thursday, it must be St. Louis. Yes, we're back at our home-away-from-home. The Cox oncologist decided that, since he doesn't know squat about BMT transplants, Greg should go to Barnes. I wasn't about to argue. Greg's blood sugars continued to be all over the place yesterday, so, since he was so unstable, they decided to fly him. Some people will do anything for a helicopter ride. Somehow, I think it would have been easier if he'd just gone to Branson and done the one there -- better scenery, too. I think the ride was pretty unventful. The most I could get out of Greg was that he asked the guys, "How long until we take off?" and the reply was, "We've been in the air 40 minutes." After they arrived, they had to "unload" him at Barnes ER, and had to put him on an ambulance to drive him the 2 city blocks over to the BMT unit, even though every building here is connected by tunnels and walkways. Our efficient health-care system.

In addition to the bowel obstruction, which hasn't cleared yet, we now appear to be adding pneumonia (or "rammonia" as Matthew says) to the mix. He had developed a cough over the weekend, and its gotten worse. The chest X-ray yesterday showed "low capacity" which, as I understand it, is an indicator. The one they took at 2 a.m. showed something, too, and when they listen, they can hear fluid. Also, his skin is very brittle, and the straps from the gurney he took his ride on actually cut his skin. I believe all this together points to GVHD, although I haven't yet seen a doctor to confirm this. (Because I was driving, I got here much later than Greg & didn't see the admitting doc. The one this a.m. was a resident.) Our attending physician this month is Dr. DiPersio. Loyal readers will recall that he knows everything (that's what HE says, anyway) and he only seems to come around after dark. This time I'm really going to try to see if he has a reflection in the mirror.

Overall, I think Our Hero is pretty sick this time, but, once again, he's right where he needs to be. They're hanging all the right drugs: anti-virals, antibiotics and anti-FUNGALS(!). (Fungus is evil). He's gotten 2 units of blood (reds were low) and he got 2 units of platelets at Cox. Dr. Vij warned us that stuff like this could happen anytime. MUD transplant patients can take a turn for the worse very quickly, and with little or no warning. But, I can rest better here, just knowing they're in charge. The doctor team is doing rounds right now, and my guess is that today's plan will just be to continue the drugs, and probably run more tests. I probably won't know any more than I do right now for a while. I'll re-post when I do.

Until then, please keep praying. Thanks to you all for all your support.

Love,

Greg & Ann

Wednesday, September 2, 2009

Back on the Roller Coaster

Well, Greg is back in the hospital -- this time its a bowel obstruction. Although no one has confirmed it, I'm pretty sure its related to the Graft Versus Host Disease (GVHD). One of the main systems it affects is the GI tract. He began feeling pain Sunday night, and things went downhill from there. I finally convinced Mr. Stubborn to come in to the ER after I told him he either got in my car or I was calling an ambulance. Things were complicated by the fact that he's in the process of switching over from the St. John's system to the Cox hospital system. We didn't even have a local oncologist yet. We do now. After spending 5 hours in the ER, they finally admitted him - to orthopedics! Makes sense to them, I guess. Actually we're doing what we do best -- waiting for a bed in the oncology unit. They hope to have one today.

Treatment-wise, they don't want to do any surgery because, as usual, he doesn't have any platelets. They think they can resolve this with an NG (nasal -gastric) tube. For lack of a better explanation, they're sucking all the yuk out through there. Of course, I have yet to see a doctor yet today, and the nurses can only answer so many questions. I'm keeping a list. If this doesn't resolve it, they'll have to transfer him to Barnes. Nothin' like another $3400 ride to St. Louis.

Blood sugar issues have reared their ugly heads again. From the time we got to the ER at 11 a.m., I started telling anyone who would listen that his sugars needed to be checked. Then, we moved to a room at about 6. I tried again. By 10, he was lethargic and confused. I finally pitched a fit, and, sure enough, his B/S was 24! (normal shouldn't go below 70). All night long he was all over the map, and didn't get above 70 until 5:30 this morning. I left about 5, and got back about 8:45. No one had checked his sugars since 5:30. I couldn't get anyone in until 9:30, and, you guessed it, he was back to 24 and completely unresponsive. They gave him another glucose shot (he's had about 4 since last night). Then the tech says he's scheduled to have his sugar checked every 12 hours. Needless to say, I blew a gasket. Long story short: they're checking every 2 hours, and I'm to tell them if I want it checked in between.

At the risk of being sued for libel, I have to say the nursing care here was atrocious overnight. I don't even want to think about what would have happened if I hadn't been here. It took about 30 to 40 minutes to answer a call light. He didn't get his "bedtime" meds until about 4 a.m., it took 5 (!) tries to get the N/G tube down his nose. I could go on & on, but you might as well just wait for the mini-series. Since I've pitched 2 good fits today, the care has improved. Sometimes it does pay to be a bitch!

Bottom line is, Greg feels pretty good, considering. Hopefully the GI issues will clear on their own, and he's not nearly in as much pain as he was yesterday. I think I've finally convinced them here that I want his sugars checked frequently and this problem fixed, and that a blood sugar of 24 is a bad thing. If nothing else, I've convinced them that there's only one way to shut me up.

Thanks to the Per and Vicki and Karrie and Mark for all the help. Matthew is staying with the Brinck's, so he's fairly happy. I just hope we don't have to go to St. L. Eric has pizza money, so all is right with the world.

If I ever get to see an actual doctor, or when there's a change, I'll post more. Until then, thanks for all the thoughts, prayers and good karma.

Love,

Greg & Ann

P.S. I think I'll try to take a nap. That should make the doc show up!