Please Join Us

Please plan to join us on Saturday, January 2, 2010, for a visitation from 10:00 a.m. until 12:30 p.m. at St. Elizabeth Ann Seton Catholic Church, on the corner of Republic Road and Cox Road. At 12:30, there will be a mass celebrating Greg's life at the church.

RIP

Gregory John Skibinski passed away peacefully this morning, Wednesday, December 30, 2009 at 11:30 a.m.

He was surrounded by his family and friends.

We already miss him terribly.

Eternal rest grant unto him O Lord, and let perpetual light shine upon him.

Saturday

I'm back in St. Louis, and I have to make this quick, because I'm on my work laptop, and it doesn't usually behave very well here. (Actually, this is the fourth time I've re-booted just to get this post up).



Unfortunately, when I got here today, I learned Greg's condition had worsened. He was on 100 percent oxygen, they believe he has extensive lung damage, they found CMV in his GI tract as well as his lungs, he's grown a new bug, but they don't yet know exactly what it is (although they assume its antibiotic resistant, as he's been covered for just about everything since 12/6), and he's bleeing internally (they got his platelets up over 100 tonight, and that should help some). They were able to get is Oxygen levels down to 70 percent during the day, but as I'm writing this, his saturation levels are slowly dropping, so I assume they'll be increasing what they're giving him tonight.



Long story short, Our Hero is in deep trouble right now. They're not giving me much hope. Skibby is here (she drove through Illinois in a snowstorm). Matthew is at home with Grandma, and Eric decided to go ahead to his hockey tournament, as we both know that Greg would be telling him to go if he could. I had planned to try to go to work on Monday, but I think that's going to be scrapped.



Thanks to all for the wonderful Christmas gifts and wishes. I truly would not be holding it together if not for all of you. Especially to Kris for the Gatorade (you don't know how precious that was!), Julie for the chocolate (ditto), Tom and Scott for getting Eric to the tournament, and being ready at a moments notice to make the I70 run if needed, George and Mary for taking Sadie to church, Per, Vicki, Mark and Kerri for keeping Matthew occupied, and so many others who I know deserve special mention, but who I'm drawing a blank on right now. Please know that I don't know how I'll ever repay you all.



Please keep praying. A miracle would really come in handy right now.



Love always,



Greg & Ann

Merry Christmas

Merry Christmas to all of our wonderful friends and family for all your support and help during this difficult time.

On the medical front, Greg's condition has been about the same for the past week, which is one of the reasons I haven't updated in a while. He's still in ICU, still on a ventilator, still considered critical, and the prognosis still isn't too great. I'm home with the boys for the Holiday, but plan to go back tomorrow. I call every day to speak to the nurses or occassionally a doctor. They tell me the same thing every day. I'll stay in St. Louis for the weekend, and if there's still no change, or (hopefully) improvement, I'll probably come back Sunday and try to go to work on Monday. Sadie plans to stay, at least through next week, and has been a tremendous help.

The other reason I haven't updated in a while is that we confirmed that Sadie's bout last week was NOT stress, but a bona fide stomach virus. Monday night Eric called me and told me Matthew had gotten sick. Sadie had already gone to bed, as she had still not fully recuperated. At about 10:30 p.m., I decided I could do more good at home than where I was, so I took off from the hospital. Eric kept me updated along the way, and Matthew was REALLY sick. Eric was an outstanding big brother, and took care of Matthew until I got home around 2 a.m. Sadie didn't know anything about it until Tuesday morning. Then, Tuesday night, Eric got hit with it, and I got hit Wednesday afternoon. I'm just now beginning to feel human again.

I know Greg would join me in thanking you all for your prayers and support. We truly cherish all of you more than I can express. Have a very Merry Christmas and I hope to have better news the next time I blog.

God Bless,

Ann & Greg

Sunday

Well, you just can't make this stuff up. First, let me say that Greg's condition really has not changed -- no better, but no worse, either. But, more on that later.

Greg's mom, Sadie, just got released from the ER. Really.

Yesterday was a very hectic day, but a very nice day. My sisters, Debbie and Judy, came down from Wisconsin with two of our nieces, Lauren and Kacey. Loyal readers will remember that it was Kacey who saved the day this summer and stayed with her Uncle Greg at Hope Lodge, where they both pretty much ate their way through St. Louis. (If you want to eat well, hang out with the guy on steroids). Later in the day, Skibby arrived, also from Wisconsin, and Greg's brother Tom brought Sadie, Eric & Matthew up. Everyone had a good visit and got to see Greg (except Matthew, but he was happy just to see me). My sisters had to leave, but the Skibinski clan went to dinner at Guido's on the Hill. We had a wonderful dinner, and I went back to the hospital, while everyone else went to the hotel. At about 7 a.m. I got a text from Skibby that they were in the ER with Sadie, who was having.....well......let's just say extreme GI output....from both ends. At one point we didn't know if they were going to admit her or not. (I thought they might consider renaming the hospital. We are WAY over our quota of people in the hospital.) They finally discharged her about 2:30. Still don't know what caused it -- food, a bug, or just being all stressed out. I guess if the kids get sick in a few days we'll know it was a bug. My money is on being stressed out. I think she's got things under control, but looked really tired when I saw her. Hopefully, she'll mend quickly and be in good shape for the holidays.

Meanwhile, Our Hero is about the same. The settings on the ventilator haven't changed too much over the past few days, but they did reduce his respiration rate this morning, which he tolerated pretty well. Friday night he had some oxygen saturation problems for a couple of hours, but that seemed to pass. They have to change his position every few hours, and sometimes he doesn't tolerate that too well.

The working theory is still CMV, and that's what they're treating him for, while keeping the antibiotics on board just in case. Oncology is recommending adding Immunoglobulin, which should help his immune system fight this. They couldn't add it before, because they thought it was possible that this was his immune system causing this, and so that drug would have made it worse. They tell me that CMV is very difficult to treat in the lungs.

I've been told that after about 10 to 14 days on a ventilator, the docs can get some idea of which direction he's going to go. Today is day 11. So, the next few days are crucial. I'm really hoping he'll stay stable enough for me to spend Christmas with the boys.

Thanks to all for all your support, especially to those who helped make Mattew's birthday party such a huge success. He was thrilled, and I'm told we can now mount a war with the "droid army" he's collected. Kris and Julie & families, as usual, I couldn't be getting through this without you. To the Coalsons, thanks for the transportation and extra playtime for Matthew. Fred, thanks for the nice letter you sent out to the Association. There's so many more to thank by name, but I know you all know who you are. We truly are blessed to have such great family and friends.

Please keep those prayers coming (I know they are!)

Love,

Ann & Greg

Theory du Jour

Update at6:15 -- Well THAT theory didn't last long. One of the many docs just came in and said they aren't going to start the immuno suppressant drug because one of his cultures grew CMV, which he was negative for before, and has been treated phrophylaxisly (if that's a real word). So, we're back to a virus, and they're going to resume gancyclovir, which they were giving him before, but discontinued a few days ago. Sigh.




Thanks to all for your thoughts and prayers. I read the comments daily, and hope and pray that I will be able to read them to Greg soon. Its great to know so many are out there pulling for him.



Greg stayed fairly stable through the night, and remains so today. Water retention is an issue, and they've got him on a lassix drip (no pun intended), and an insulin drip. We got the sugars under control yesterday, but they resumed the tube feeding today, so that's all fubar again.



Well, the latest theory is that this is not an infectious pneumonia at all, but rather an "idopathic pneumonia." These guys in the medical ICU are working closely with the BMT team downstairs, and basically what they think is this could be a delayed reaction to the chemo and the transplant he had in May & June. Under questioning, they admitted that they usually see this within the first 100 days. I said, "So, this is a longshot?" and they admitted it is. But, nothing from any cultures has grown anything, so they're at a loss. The docs are conferring as write this (if I walk by the nurse's station slowly enough, sometimes I can eavesdrop) trying to decide if they want to start a new drug called etanercept (or Enbrel). Its an immunosuppresant, so its not without risk to someone with his screwed up immune system. They're trying to decide if the risks outweigh the benefits. My guess is they're probably going to go ahead and try it. Skibby asked me how long after they start it should they expect to see results? I said, "Boy, that would have been a really good question to ask." I'll try to remember to ask that tomorrow.



I'm a wee bit sleep deprived right now. X-ray came in at 12:30 last night and kicked me out, then at 3:30 a.m. the nurses kicked me out because they decided to give him a bath. Seriously. I'm hoping for a quieter night tonight.



We're going to have a busy weekend, as family is coming. We decided to let Matthew come to St. Louis, although he won't be allowed to see Greg. That's OK, I don't want him to see his dad like this anyway--a little too scary for a 6 year old (its scary enough for us adults). But, this way he can at least see me, and I can see him. It will be good for both of us. Eric is coming too, along with my sisters, two nieces, Tom, Skibby, and Sadie. So, with all that company, I may not get to post much. No news pretty much means he's the same, and I'll post again when I have a chance.



Thanks to all.



Love,



Greg & Ann

Thursday

I know I owe you all an update, but I haven't felt much like writing.

Greg's condition hasn't changed too much over the past 48 hours. He has pneumonia, but they still don't know what kind. They believe its bacterial, but they're treating for everything. His latest CT scan showed "significant" lung damage from the pneumonia. They don't know yet if its reversible. He also been bleeing pretty steadily from the GI tract, and they've been giving him TON of packed red blood cells and platelets. They actually got his platelets up to 91 as of this morning, but we don't know if that will hold. He hasn't been at 91 for years. But, I'm suspecting that they draw right after they get the platelets in. We'll see what they're at in 24 hours. Blood sugars are all over the place, and his sodium levels are rising.

He's got lots of things going on, and the doctors aren't saying much. I finally asked, point blank, for a prognosis. The lead ICU doc said that, taking into account everything that's happening now, along with his medical condition to start with, the doc estimates about a 70 to 80 percent mortality chance. Not very good odds.

I have to keep telling myself that he's beaten the odds before, and he's fighting now. I don't think he's ready to give up yet.

Please keep the prayers coming.

Thanks.

Ann & Greg