Thursday, April 16, 2009

Recovery and Potential Donor Update

7:40 p.m. Stephen had a follow-up visit today and we're happy to report that he is doing well. He is still moving a bit slow but is on the road to healing. We are so happy to have him at home with us although we know that he is eager to get back to his life in White Plains.

We are so very touched to report that several potential donors have called Yale's Transplant Center. We are very grateful and feel very blessed to have wonderful people in our lives who would consider giving such an amazing gift. We do want to let everyone know that the Transplant Center cannot give us any information regarding potential donors. All we know is that there have been some contacts made. It is frustrating to not be able to thank those who have called but we honestly do not have any information on just who has called. We certainly respect everyone's right to confidentiality but just wanted to let everyone know that the only information we will know about potential donors will be what the donors themselves share with us.

Although this journey continues, we are very grateful that Stephen will return to health and that Alison's condition has remained "status quo". We thank everyone for your continued support and prayers.

Looking forward to a warm and quiet weekend.

Karen and Joe

Sunday, April 12, 2009

Out of the Hospital

Wow, it’s been a trip. I’ve definitely learned that everyone’s body is different and will react differently to similar situations. And doctors don’t always know what’s best, they’re assistants and you’re really the guide to your own well-being.
Nonetheless after waiting to go home for a few days they’re letting me go. I want to thank everyone for their support whether it be flowers, messages, or visits. It made the experience a lot more bearable.
So, I didn’t give my sister part of my liver. The doctor really explained it like this: the preliminary tests are only able to confirm 90% estimates and they’re really never know until they open me up. They opened me up and removed my gall bladder, got that blasted thing out of the way, and started to move stuff around and noticed that the main vein supplying blood to my liver was running differently than they anticipated. Using their wisdom and communications with other experienced surgeons across the world they decided to not proceed with the surgery. Hopefully a more appropriate candidate will come forward and we can get my Alison back to normal (whatever that may be ;-))
It’s still weighing on me that I couldn’t be the life giver I could have been for my little sister but I trust the surgeon’s call by not removing the liver. So as I’m sitting here in stitches (literally) there’s still a lot of emotion that I need to deal with and a long path ahead of me to get me up and running (running-hopefully by this summer).
So will definitely still need your support with my two weeks at my parent’s house in recuperation and months of “taking things slow” (I know, very abnormal for me). Again, thank you all for your support and prayers and hope that they will continue while I recover and we find Alison a better donor.
Posted By: Stephen

Happy Easter

Sorry for the delay in updating the blog but we were busy bringing Stephen home. Yes, I said, "bringing Stephen" home. The catscan showed that he did have some fluid in his lungs and abdomen but nothing more than what should be expected. He also did have a blockage but it appeared as if the blockage was starting to clear. Since he had a pretty good night, the doctor determined that he could come home today. Needless to say we are all thrilled to have him home and to be home. He has had a bit of a time getting comfortable but is resting now. So, for the moment all is right with the world, our girls were able to go to church on Easter Sunday and the Easter Bunny found the Cubbellotti "kids" and left their baskets at their respective morning "spots". We will relax for the afternoon with my sister in law Dawn bringing dinner and then perhaps with some of my family later. We feel so very blessed. Our families have been amazing, our friends so supportive. May you all have a blessed Easter Sunday to enjoy with those you love.
Much love and thanks to all,
Karen and of course, Joe and our children

Saturday, April 11, 2009

Rough Afternoon

Pain and emotions are going hand in hand today.

Morning Update-11:45 am

So, I'm sure the night shift thinks I'm one of those "crazy" mothers-as I just wanted them to relieve my son's pain. They finally got an order for the "good"medication and Stephen got relief. Dr. Emre came in this morning and he feels that the pain is not from anything concerning. He is sending him for a catscan just to make sure. Hopefully, we can keep the pain under control and start moving forward-again, stay tuned.

Spoke too soon

12:10 am Stephen and Alison convinced me that I should go home tonight, so I reluctantly did. But Stephen's pain returned and so did I. Again, the doctors can't seem to get it under control.

Friday, April 10, 2009

A Brighter Afternoon

5:25 pm So, it seems as if Stephen has turned a corner. A wonderful doctor made a great "call" today and changed Stephen's pain medication and within an hour he was like a new person. He is still, of course, uncomfortable but nothing like he has been for the past 3 days. We are hopeful that he is starting on the road to recuperating-stay tuned.

Good Friday-morning

6:20 a.m. Stephen had a restless night. I think he is trying to hold off on pain medication but then becomes so uncomfortable. It is such a difficult balance to control the pain and keep him alert enough to be able to do some walking and breathing exercises. Let's hope that today will bring relief. Stephen's friends Jess and Mike came in from NY to visit with him yesterday, what a smile that put on his face. His roommate, Eddie has also driven in from NY the past two nights-his presence has made such a difference. Our family, of course, has been so wonderful-their presence gives us all an invaluable sense of comfort and support. I'm not sure what we would do without all the love and support from everyone around us-I cannot tell you what it means to each of us.

Thursday, April 9, 2009

Holy Thursday

12:45 pm Joe stayed with Stephen last night as everyone convinced me to go home. Dad did a great job taking care of our "little" boy although Stephen had a very rough night. They just could not get his pain under control. He is better now. Still has a fever and they have started an antibiotic even though they have not gotten results yet-they're being proactive. When I walked in the room this morning, Stephen was sitting up in the chair-what a wonderful site. He is now back in bed and trying to rest. Stephen just looked over to me and I asked him is there was anthing he wanted me to say, he said to thank everyone for their good wishes and he hopes to be better soon.

Wednesday, April 8, 2009

slowly but surely

So, here we are. My parents and Aunt Sandi went down to the cafeteria to get some lunch. I am sitting next to Stephen as he drifts in and out of sleep. He is still in pain and is connected to the PCA pump which he can press whenever he feels he needs pain medication. Some good news is that he can now eat solid foods if he wants to and he took a walk with my Dad down the hallway earlier. Walking was a big improvement, so thats good.

The doctors should be coming on rounds at about 3, so we will have more information hopefully around then.

I feel really bad for Stephen, I almost feel like he is in pain for nothing. It is so hard to see him be in pain. I am doing my best to help him with whatever he needs and just be there for him.

I also feel helpless because 1. he is in so much pain and 2. what do we do now? So many family members and even a few friends have gotten tested to be my donor and no one is a match. All we can do now is wait for another gracious, amazing individual to want to get tested.

<3 Alison
As always, thank you for keeping my brother and our family in your prayers.

Morning update

5:15 a,m.
Stephen had an "OK" night. He is such a good patient, even though he has a fever, is itchy and his pain is somewhat controlled with a pump. He has been asking for me to tell him again about what happened. He was very upset last night when the doctors told him and is disappointed and worried about Alison but I keep telling him that we are so grateful that he is "OK". We are so very proud of him, he is still our hero-what an amazing son we have. Alison is very worried about her brother, feeling guilty that he is going through this. As always, keep them both in your prayers.
Love, Karen

Tuesday, April 7, 2009

Update-3 p.m.

I want to start out by saying thank you to all for your ongoing prayers, thoughts and support. I then want to tell you that Stephen and Alison are "OK". Unfortunately, however, Stephen went into surgery this morning and it was determined that he could not be Alison's donor. His surgery was well underway and at this point, we are just very grateful that Stephen, although in a great deal of pain, is not in any imminent danger. He has been in recovery for several hours and it appears that they are beginning to get his pain under control. Once that happens, he will be moved to ICU. As you can imagine, we are all devastated. Most especially, Alison. I know I do not need to ask but please continue to keep my children and my husband in your prayers. We can all use your prayers right now.

Update from the Big Sis

Hi everyone! Thank you so much for your support.

We have been at the hospital since 6:00am. I don't think I have been up this early in months! :) Stephen went into surgery at 7 and will not get out till around 4 or so. Alison is still waiting, she will hopefully be going in shortly. This has been an emotional day so far (a few tears) but we know great things will come and we can't wait!!

We will keep you updated as soon as we know more!

JenJen <3

A Long Night

It's 3 a.m. and I am wide awake. I would have written sooner but I had to check my "cheat sheet" to remember how to post a message. Internet savvy I am not. Then after I typed my message, the internet failed-go figure. Alison is sound asleep, thank God. I hope Stephen, Joe and Jennifer are too. For those of you who are parents, you know that waking in the middle of the night and worrying about your children, "comes with the territory". I can't tell you how many nights, I have done that. I have had many a night, that I would lie in bed asking God to keep them safe. When they are all home from school, I would wake up and check their beds to make sure that they are home safe and sound-and thank God they always were. Father Bob told me to think of the times that God has been present in all of this. I have given that a lot of thought this week and God has been present many times over this long journey. And just today, God' presence was felt in the kindness of two groups of people. A very nice man from St. Pius who works here at Yale called me and offered meal and parking passes and then our new friend, Jeff Aglie (a liver donor for his brother in law) brought a beautiful basket from he, his wife and the Donahues. It was filled with good wishes, prayers and things that only a family "who has been there" would know to give-we have been very touched by their kindness. It is through new friends and old and our precious families that Joe and I and our children know that God has been and will continue to be with us each step of the way.

Monday, April 6, 2009

The Parent Perspective

So Joe and I thought that we were given the ultimate test as a "tag team" when we were blessed with twins but little did we know.........The day has certainly been full starting with Alison and I being dropped off at admitting and Stephen and Joe venturing to the transplant clinic. After several appts. for Stephen we were back together for a short time, then more tests for Alison and appts. for Stephen. Finally, the "boys" left and Alison was sound asleep. The evening flew by with phone calls, more visits from doctors and a "little" scare that called for a cat scan-scare averted and now it's time to settle down for the night. Alison got a little "help" to sleep, we'll see how the mom does. I pray my "boys" will get a good night's sleep. I hope my JenJen will too. It's so hard to not be able to all be together. The morning can't come soon enough. Thank you all for your thoughts, good wishes and most importantly, your prayers.
Love, Karen

Pretransplant Post 3

Okay...i'm bored. I came in here at 9:30 this morning. I have gotten bloodwork, a chest x-ray, and an abdominal ultrasound. we are. I'm sitting in bed and doctors that I've never seen before keep popping their heads in and out. Tomorrow Stephen will get to the hospital at 6am. They will probably start surgery on him between 7 and 730. Surgery on me will start sometime between 9 and 11? I have learned not to get my head set on times because you never know whats going to happen. I can eat today, but they won't let Stephen, so that sucks :(.

So here is how my weekend went:
I got formally initiated into my sorority. I and my 45 sisters are now the founding sisters of the Iota Nu chapter of Phi Sigma Sigma.
The Pioneer Pull went pretty well. Despite it being cold and windy, a good amount of people still came out to support me, so I appreciate that.
My friends and I went out to dinner afterward, and it was nice having that time with them.
Sunday was my Phi Sigma Sigma family luncheon which was wonderful, but I had to stay "see you later" to all my sisters which was extremely hard.
Sunday night was hard as well as I had to say "see you later" to a few of my SHU friends.

Now we are just waiting on tomorrow. I hope I can get some sleep tonight. I am so nervous and anxious and just want to get this over with. Some of my friends are coming to be with me tomorrow morning before the surgery which I am looking forward to and really appreciate. Other family members are coming later one, but I'm not sure when.

Thanks again for everyones' support. It has meant a lot to not only myself and Stephen, but to our entire family. Please keep us in your prayers and keep checking back for updates from my mom to let you know how things are going throughout surgery and beyond.

Love you all.

Friday, April 3, 2009

Pretransplant Post 2

So, its official...the transplant is April 7th. It is finally becoming real. After 10 family members and friends were determined ineligible, the doctors went back to Stephen, My amazing, selfless brother is giving me the gift the keeps on living. He is my second chance at life and I am so appreciative for him and everyone that has gotten tested for me. I don't know what I would do without my family and friends.
Here is some information about the surgery and things happening before and after it. There are a lot of things that are opposite before, during, and after surgery for Stephen and me. Hopefully these things are helpful...
1. I will be admitted on Monday, April 6th for testing and prep before surgery
2. Stephen has to go in for testing on Monday, but won't be admitted until Tuesday morning.
3. Stephen's surgery will start at about 7am on Tuesday morning.
4. A few hours after his surgery, around 9 or 10, they will take me in to start my surgery.
5. Stephen's surgery should last about 6 hours
6. My surgery should last about 10 hours
7. The doctor and members of the transplant team will come out to update anyone who is in the waiting room during the surgery.
8. After surgery, I will be kept unconscious with a breathing tube until at least Thursday, possibly longer.
9. Stephen will be woken up soon after surgery.
10. I will be in the ICU for 2-4 days.
11. Stephen will be in the ICU for 2 days.
12. I will be in pediatrics, Stephen will be in adult.
13. I am not allowed to have visitors until 10 days after surgery. My parents and Jen can see me if they wear gowns, masks, and gloves when they come in.
14. Soon after surgery, they will want both Stephen and me to get up and walk around. We will be going through some physical therapy in the hospital that helps us do simple tasks to make living at home easier.
15. Stephen will be in the hospital for 5-7 days total.
16. I will be in the hospital for probably 14 days.
17. Stephen will be living home for a month, and then gets to go back to living in NY!
18. My recovery will be about 3 months and I shouldn't be in big groups of people for a very long time.
19. Both Stephen and I will have to go back to the hospital a couple times a week at the beginning to check how we are doing after we are discharged from the hospital.

We got a lot of information tonight at the meeting we had with the transplant team. They were very reassuring and helpful that they would do everything in their power to keep us safe and make sure things go as well as possible. Please keep myself, Stephen, Jen and my parents in your prayers during this undertaking.

I love you all so much and thank you for all your support.

Make sure to comment back on this page so others can read it and I can too! When I am feeling better, I can respond. In the meantime, my mom and Jen might be posting things to keep everyone updated. This is definitely a much easier way to inform everyone of what is going on so my mom doesn't lose her voice explaining the story a bunch of times (though maybe we should have her do that...hahaha!) JUST KIDDING!

Check in daily for updates! <3