Tuesday, December 29, 2009

Tuesday update

Happy Birthday to Auntie Dawn!!!!

12:30 p.m.

The past several days have been wonderful. Overall, Alison has been feeling really good. She does have a long way to go but everything seems to be heading in the right direction. Saturday, we had a family gathering at Aunt Sharon's and Uncle Bill's-a day patterened after Christmas at Grandma and Grandpa Lindwall's. It's a very special day. Alison was not able to attend as there would just be too many people. It was hard for her not to attend as she just loves family so much. Dad stayed home with her. Alison ended up having a nice afternoon-she even beat dad at the Game of Life.
On Sunday evening, Alison had a few of her high school friends over-as we layed in bed, we could hear them talking and laughing. It was such a gift that we really appreciated. We have spent so many nights lying in bed, worry about her, knowing how sick she was in her bed. Now to just hear the laughter, warmed our hearts. Yesterday, we ventured to Yale for another follow up appt. Overall, reports are good. Some fluid build up and medication changes but all in all-a good report. We will be back again tomorrow. Frequent visits are tiring but reassuring. Last night we ventured to Auntie Dawn's to celebrate her birthday-Alison seemed to really enjoy herself. We dropped her off at her friend, Emily's to visit with some other high school friends. We thought this is probably a bit much for one day but she assured us that it is "OK".
Stephen went back to NY this morning-it was wonderful to have him home-weather permitting, he will be back on Saturday for our special visit with John's family. Dad and Jen are back to work this week, mom is trying to organize and "catch up". Well, it's time to wake Alison-yes, except for being awakened to take her medication, she is still asleep-hopefully today will be another good day.
Love to all,
Karen and Joe

Friday, December 25, 2009

Merry Christmas

December 25th 9:00 p.m.

Christmas Eve was very special last night. We all enjoyed a beautiful evening with Uncle Danny, Auntie Dawn, Danny, Jr., Michael and Pop. Alison was so excited and seemed to enjoy every moment from the lovely fire to dinner and presents. Stephen and Jen accompanied Mom to church for a late night mass. Dad stayed home with Alison. When Mom returned home, she peeked in on Alison, she appeared to be asleep. As mom closed the door, Alison said, " We didn't read the story". It has been a tradition since Alison was a little girl that she and mom would read, 'Twas The Night Before Christmas. So, while Alison dozed, Mom read from the book that she had as a little girl. It was very special, a moment in time that mom continues to treasure-especially this Christmas.

Christmas morning was just the best. We were HOME, we were together and Alison was feeling good-what could be better? Opening the gifts around the Christmas tree is just one of those times in life when the rest of the world seems to fade away-nothing else matters but our children, our family. Cooking breakfast together was perfect and then Jen lead us in what is sure to be a new tradition-a scavenger hunt. It was such fun. John's fammily called. Alison answered the telephone and we were so glad that she was feeling so good-we knew that in her voice, they could hear her excitement and happiness. We all can't wait to get together next weekend. Our afternoon at Aunt Terri's was great-Alison really enjoyed seeing family that she has not seen in such a long time-especially her little cousins. She was having such a nice time that it was mom who had to finally say that it was time to go home.

We truly had a wonderful day, pain free and filled with love-it just doesn't get better than this.

We hope that you, too, had a special day filled with those that you love.

Merry Christmas to all.

The Cubbellotti's

Thursday, December 24, 2009

Christmas Eve Day

Christmas Eve 12:30 p.m.

Hi Everyone,

Sorry we havent' written in a few days but Alison did come home Tuesday afternoon.

Yesterday, the home health nurse came out and taught Alison and mom how to administer the antibiotic. It looks like Alison will be able to do this herself-mom has to admit, she is a bit relieved but will be ready to step in if needed. Alison is really a "pro" already-she is going to make an amazing nurse one day. We keep saying that we wish she could get clinical credits for all she has learned. Mom got out to get some shopping done and stop by work-it was great to catch up (mom plans to return to work in January) and see some friends-Stephen stayed home with Alison and helped with getting some tasks done for the holiday. Alison finished her wrapping and had a wonderful visit with her Godmother.

Alison was off early this morning with dad to appointments with the Transplant Surgeon and the Hemotologist at Yale. Stephen is out grocery shopping and such and Jen is due to come over soon to help mom wrap presents. Mom is home trying to finish last minute tasks. Alison just called with wonderful news. She said that the doctors are very happy with her bloodwork, her lungs have never sounded better and she is doing great. Well, we just got our Christmas present-and are thrilled-off to call John and his family-we know they will so happy to hear this news.

Our plans to spend Christmas Eve with Pop, Uncle Danny, Auntie Dawn, Danny, Jr. and Michael really look like they will happen-how exciting!! When we attend mass tonight, we have so much to praise and thank God for-it will be a very special mass for us. Alison is disappointed that she cannot go (too many germs) but we told her that God will certainly understand and that prayers can be said anywhere. Tomorrow, if all continues to go well, we will have a very special morning at home. Joe and I can't wait to wake up with our three children all home-healthy, safe and sound-this is certainly looking to be the best Christmas ever. We will spend spend a little time at Aunt Terri's in the afternoon-we were thrilled when the doctor said that Alison could go. She is really looking forward to seeing everyone, especially the "little ones"-they will have to keep their distance-but Alison is very happy none the less.

We want to wish everyone a very healthy and happy Christmas. We cannot thank you all enough for your prayers, your support and love. May you find great joy this holiday season. Continue to pray.

Much love,
Joe and Karen

Monday, December 21, 2009

It's looking like we will be heading home tomorrow

So, Sunday was fairly uneventful. Alison was free from a headache for the first time. She still does have pain left from the fluid tap and draining but pain medications are helping. She was very tired and mom put a sign on the door in the afternoon, hoping to get her some sleep. Dad worked all through Saturday night and got home late Sunday afternoon-he is exhausted. Mom went home last night. Her back is bothering her-and throwing her back out right now is just not an option.

As of this morning, news is that Alison does not have the toxin of the c-dif bateria-that is really good news. All the other cultures are coming back negative-again, really good news. The transplant team was just in and said that Alison can go home tomorrow-this is great news, however, she will need to be on the antibiotic for at least another week. This will be by IV or with intramuscular injections. This news was very disappointing to Alison as she was given the impression from the Infectious Disease doctor that she wouldn't need antibiotics much pass tomorrow or Wednesday. The transplant team explained that they feel very strongly that with her supressed immune system, a minimum 2 week regimen of antibiotics is critical. Alison is not happy about this but really has not other choice if she wants to go home-and, needless to say, she wants to go home. The discharge plannning nurse is making the necessary contacts to see what is available from a homecare agency. Most likely, mom will need to be trained to give IV medication and/or injection so that she can be a back up if needed. This nursing business is definitely not mom's "cup of tea", but if she just thinks of it as falling under the catagory of "mommy duties", then there is not question that she will be able to handle it -Alison certainly does not get her interest or talents in the medical field from her mother.

Alison is wrapping her Christmas gift right now. This is serving as a bit therapeutic for her as she tries to absorb the next stage of the plan. She is very excited that some of her long time and high school friends are coming tonight for their "secret santa" get together-we know that this will certianly lift her spirits.

On another note, we did just find out that one of our dear friends was just readmitted to the hospital this morning. He had had surgery and now has an infection with fluid around his lung. Please pray that all goes well with him and that his infection,too, will be responsive to antibiotics.

Until tomorrow,
Karen and Joe

Saturday, December 19, 2009

Friday and Saturday update

Saturday, 10:00 p.m.

Friday was fairly uneventful. Alison continued to have pain from the fluid taps, drain and headaches. The pain medication provided temporary relief throughout the day. By late day, Alison was feeling "OK" so mom decided that she would go home. Dad is feeling a bit under the weather, so Alison went "solo" for the night. Mom returned today bearing blueberry and corn muffins (two of Alison's favorites). She also brought gifts, wrapping paper, scissors and tape. Alison wanted to try to get some of her wrapping done. Mom made it from the car looking much like a bag lady. Mom and Alison spent much of the afternoon watching a movie-Just Like Heaven (thanks to Alison's Godfather for Netflix)-Elf then came on television (one of Alison's favorites, definitely not one of mom's). It was a bit normalizing though-watching movies in anticipation of a snow storm. The nurse told us tonight that Alison now has c-dif-this is another bacteria-ugh!!! They just started the antibiotic to combat that one. Let's hope we can get that under control as quickly as possible. Jen is sleeping at home tonight to take care of the dogs while dad is out in the storm, he's not feeling well and mom is worried about him working through the night. He knows work need him though-he assures us that he'll be fine.

Jen called to tell us that some of our neighbors had decorated our house with a beautiful wreath and lights. Jen sent us a picture-oh my gosh-our house and yard look like a winter wonderland-many, many thanks to the Pulie's and Essary's-we are just so very touched.

Alison texted John tonight-"Happy two months"-it doesn't seem possible but it's two months today since Alison had the transplant. So much has happened-we are so grateful that John is now doing well and that Alison's new liver from John is making itself right at home. Because it has been such a rough road, we worry that John has not been able to see how invaluable his gift to Alison is. Dr. Emre recently told us that Alison probably had two months to live-well, it's two months today. It is so hard for us to wrap our minds around this thought but we want John to know that Alison would not be with us today if it were not for him. He has truly given her the gift of life. We hope he knows, not only how appreciative we are to him, but also how much we love him. He is so very special to us.

With love and gratitude,
The Cubbellotti's

Thursday, December 17, 2009

Evening Update

11:00 p.m.

So, Alison finally had the fluid tap done at 8:30 p.m.-six and a half hours late-ugh!! We returned to her room around 10:00 p.m. The doctor drained 1,000 cc's of fluid from her left side, 350 from the right, 650 from her abdomen and left a drain in her abdomen, which has already drained another 450 cc's. The abdominal drain has been very painful for Alison. The doctor indicated that he had a hard time draining the fluid from the right side. He said it was loculated, which means encased. We're not sure what Dr. Emre will say about that-hopefully not another drain. Alison was able to eat when she returned to her room-yeah!! Please pray that the pain from the abdominal drain will subside and that Alison and mom will be able to get some rest tonight.
Until tomorrow,
Karen and Joe

some good news

6:20 p.m.

Alison had the lumbar puncture (spinal tap). She was very frightened but had a wonderful doctor who made the procedure as painless as possible-she did really great. As always, we are so proud of her. Preliminary results are in-----the good news is that Alison does not have menangitis-thank God!! Blood cultures did come back and she has an e-coli infection. Doctors are not sure of the source but have indicated that this should be a treatable bacteria. We are still waiting for her to go down for the pleural and abdominal taps-they were scheduled for 2 p.m.-some things never change!! Alison cannot eat until after this procedure and has not eaten since Monday night, hopefully she will go down soon. She still has a headache, perhaps that will lessen when she is able to eat. The doctors had Alison on 5 antibiotics, we are now down to 3. Once we have the results of the fluid taps, the doctors will be able to finalize the antibiotics and a plan for moving forward. Please pray that no other infections are found and that she does not have too much pain as a result of the fluid taps--and that they take her down for the taps SOON!!
All in all, the news today was much better than it could have been. It looks like she will need to stay in the hospital for 7 to 10 days-we're not sure what that will mean for Christmas but, at this point, we are grateful that the infection thus far is treatable. Let's pray that that remains the case.
Love to all,
Joe and Karen

morning update

8:45 a.m.

Dr. Emre came in this morning and said that Alison really does need to have the lumbar puncture (spinal tap). She is very upset and frightened about this procedure. Please pray that she will get through it with the least amount of pain and stress. She will also go to Interventional Radiology this afternoon for the tapping of fluid from around her lungs and in her abdomen. The doctors are trying to specify the type(s) of bacterial or viral infections that Alison has so that they can determine the most appropriate treatment. They are hoping to be able to take her off some of the five antibiotics that they proactively have her on now.
We will update later.

Yesterday-a long, long day

Thursday, 7 a.m.

Alison finally went for the catscan of her chest and abdomen at 3:30 p.m.-6 hours after we arrived in the emergency room. We went up to a room from the test-Alison was having a tremendous amount of pain in her head. She has had a headache since yesterday morning. Once we got up to the floor, we asked that the doctors discuss this head pain further as it was very concerning to us-it could be from the fever but it doesn't seem to get any better when the tylenol brings her fever down. The doctors called in a neurological consult and decided to do a catscan of Alison's head at midnight. This test proved to be negative. The doctors then wanted to do a lumbar puncture (spinal tap)-Alison was very upset about this, we decided to hold off on this decision until this morning. Alison is now on 5 antibiotics. One of the doctors from the transplant team came in this morning, he discussed tapping fluid from around the lung and abdomen-he will talk with Dr. Emre shortly and determine today's plan. Please continue to pray that the doctors can get Alison's infection under control and continue to give her the strength for what lies ahead.
We will update later,
Karen and Joe

Wednesday, December 16, 2009

Afternoon Update

2:40 p.m.

When the call from Yale came in this morning, we were directed to come to the emergency room so that they could get her antibiotic and catscan done as soon as possible. It also appeared that they had to work on getting a room available for her on 7 West. Well, we have been here since 9:30 a.m. Alison has gotten her first dose of the IV antibiotics, zofran (anti-nausea med), dilaudid (pain med as she has a pain in her right side), has drunk the contrast for the CT scan and is resting. We hear that the catscan is scheduled for 3 p.m. We're hoping that the test will give them some insight as to what is going on. While Alison was sleeping, I spent a little time in the chapel this afternoon. Please continue to pray for her. Joe will be up soon, he went to work this morning. It's so challenging to keep those responsibilities going but one of us has to. We will update later.
Keep praying,

Off to the hospital we go

Wednesday 8:30 a.m.

As we were getting ready to go back to the transplant clinic this morning, we got a call that Alison's blood cultures from yesterday, tested positive for a bacteria-meaning she is being admitted to the hospital for IV antibiotics. We are now waiting for the nurse to call back and let us know if there is a best on 7 West. As much as we are disappointed that Alison is being admitted, we are a bit relieved that there is something that can be done to help her feel better. Her temperature went up to 102.4 last night-very scary-her mom kept watch throughout the night-waking her for doses of tylenol. Please pray that the bacteria, not sure which one it is yet, will be one that will respond well to the antibiotic.
Stay well,
Joe and Karen

Tuesday, December 15, 2009

hopefully just a "little" bump in the road

Tuesday, 8:00 p.m.

So, Alison went to the Transplant Clinic for a regular follow-up visit yesterday and left with wonderful reports. Dr. Emre was very pleased with her bloodwork, how she looked and sounded. We left feeling like she's really "turned the corner".

This morning, however, Alison woke up with a fever and headache. We called the clinic and was told to bring her right in. We spent the day at Yale, going for xrays, bloodwork and ultrasounds. All reports looked good. The doctors are a bit baffled-Dr. Emre changed her antibiotic and said that he wants to see her again tomorrow morning. We were thrilled that he was not admitting her to the hospital. We did have a bag packed in the car-just in case. Once home, Alison feel sound asleep. She does have a fever again but as long as she responds to the tylenol, we're "OK" to hold off until tomorrow to go back to Yale. Please pray that she does not get any sicker and that the tylenol will keep her fever under control.

We will update tomorrow.

Joe and Karen

Sunday, December 13, 2009

We couldn't have asked for anything more.....

Sunday, 8:30 p.m.

Wow, can't believe that it has been four days since we have updated the blog. What's that saying?-Time flies when you're having fun-it really has been a wonderful four days. On Thursday, Alison, Jen and mom did a little Christmas shopping together-although Alison did use a wheelchair, it was just the best to be able to shop with my girls. Alison slept in her own bed for the first time in a very long time-she said that she actually had a pretty good night's sleep-thank heaven for "small" favors. Friday morning, Alison and mom headed back up to Yale for bloodwork. We later found that her prograf level is good but her potassium was up a bit-not alarmingly high but requiring close watch. We had the best evening as John came over for pizza-Pepe's Pizza that is-many thanks to our dear friends for the "special delivery" -John had talked about never having had Pepe's Pizza-we were so excited to be able to share this with him. Jen was able to join us, Stephen was still away at school but Joe, Jen, Alison and I really enjoyed getting to know John a little bit more. Each opportunity we get to spend more time with him just confirms what we already know-he is just a terrific young man-genuine in every way. We hope he had as good a time as we did. Saturday included Christmas baking with my girls-we certainly had fun and made some traditional cookies. Joe and I went out for the very first time-leaving Alison on her own-as we Christmas shopped, we couldn't help but think about Alison every second, we knew in our hearts that she was fine but "old" habits are hard to break. There were so many nights in the past, when our cell phone would ring and we would hear that "voice of sickness"-hopefully, that sound is now something of the past. Sunday came and we had plans to decorate our Christmas tree toether-Stephen is now home as we picked him up at the train station last night. As we lit a fire, listened to Christmas music, snacked on cookies and had all three of our children together, smiling and reminiscing-Joe and I knew that life just doesn't get better than this-our Christmas wishes were coming true right before our eyes. Alison is now at her roommate's having dinner-this is a first for her to go anywhere outside of the hospital and home. She will be home soon-I'm sure she is having a great time. We pray that Alison will continue to recover, she still gets tired quickly and needs to wear a mask in public-her immune system is still very fragile-we can't let our guard down yet, but---we can certainly start enjoying the new gift of life that John has given to her, and to us. We couldn't ask for anything more-what a glorious weekend.

With much love,

Wednesday, December 9, 2009

A really nice day

Wednesday, 6:45 p.m.

Alison was able to enjoy a little Christmas decorating yesterday. Her mom was thrilled to unwrap each special item and reminisce with her about who it came from, or what it's significance was. We were able to enjoy dinner at home, at our own table. Alison did sleep in the recliner again last night but actually said that she had a pretty good night's sleep. We headed off to the Transplant Clinic this morning-a bit nervous with the weather, but we made it to New Haven. We went for bloodwork and as mom waited for her, the woman who registers you at the lab and has been seeing Alison for months, couldn't get over how wonderful she sounded and looked. By the time we saw the doctors, Alison's potassium level had come back, it was up a bit higher but the doctors were "OK" with it. We left the clinic within just a couple of hours-that is a record. Alison really wanted to do a little Christmas shopping. We felt it was pretty safe as there are not too many people in the individual stores during the day.(we wouldn't go near a mall at any time right now). She really enjoyed picking out gifts for family and friends. We headed home and a friend from Sacred Heart came to visit and have dinner with us. They are now watching a movie-all is good. The nurse from the clinic just called and said that her prograf (anti-rejection) drug is up a bit. This could be why her potassium is a bit high. We will lessen her dose but this did make Alison very nervous. We will be back up to Yale on Friday and get labs done again. Please pray that all stays within safe limits.

Hope your day was as good as ours.

Joe and Karen

Tuesday, December 8, 2009

Sleeping in your own home, what a concept

Tuesday, 10:30 a.m.

So, Alison did come home from the hospital last night. Yes, we were surprised too-but, needless to say, elated. The Interventional Radiologist tapped 2,000 cc's of fluid from her abdomen and 500 from around her right lung. She was in a lot of pain afterward and needed those dreaded narcotics again. However, as the afternoon wore on, she was better as long as she did not move. The transplant team came in and said they wanted to tap the fluid on the left today. After much discussion, it was decided that we would not do that and after getting albumin and a treatment with albuterol (that typical asthma medication, we learned can help bring your pottasium down), we would do her bloodwork again. If her potassium and blood pressure were down, she would be able to go home. We anxiously waited and prayed for the good results and our prayers were answered and off to home we headed. Alison slept in the recliner and was uncomfortable but she was able to sleep in her own home-she will tell you that that is better than any bed in the hospital. She seems good this morning, still in pain when she moves but is able to "work with" the pain. We're hoping today, if she feels up to it, to do a little Christmas decorating. She is excited to do that but we'll just take things one step at a time. We do need to go to the Transplant Clinic tomorrow, please pray that her potassium stays within normal limits, or she will be readmitted to the hospital-we would really rather keep that "sleeping in your own home" concept going if we can.

Have a good day, we know that we will certainly looking forward to having one.

Joe and Karen

Monday, December 7, 2009

Tap, tap, tap......

Monday, 10 a.m.

So, they took Alison in to Interventional Radiology earlier than we expected today-that now that is really a miracle!! After much discussion, it looks like the doctor will tap fluid from around Alison's right lung and her abdomen. They are not planning to leave a drain in. We hope the final decisions are what will work best. Draining fluid from around the lung typically causes a great deal of pain and we really don't want to end up in a cycle of pain medications and resulting issues. We also hope that not putting a drain in is the right decision as we do not want to be back here doing this again. Today's decisions are different than what we discussed with Dr. Emre last Friday but we confirmed that Dr. Emre has been consulted today -we trust his judgement. Alison made the final decision-saying, "If that is what Dr. Emre said, then that is what I will do". Alison has grown to become such a good decision maker and self advocate. She is really amazing. Please pray that her blood pressure is safe during the procedure and that she is with as little pain as possible afterward. Please also pray that her blood pressure and potassium levels will come down once the fluid is tapped. We will update later.

Karen and Joe

Sunday, December 6, 2009

Sunday afternoon update

Sunday, 2 p.m.

Alison and dad had an "OK" night. The doctor decided this morning to take the feeding tube out. If Alison can eat enough, she may not need to get it put back in. The doctor also decided to hold off until tomorrow to tap the fluid and put the drain in as they are more comfortable with the "senior staff" being here. Alison's blood pressure and potassium level are high. Both are being watched very carefully. She is actually feeling pretty good. So, she is really trying to eat as much as she can-as you can imagine, she will do anything in her power to not have the feeding tube again. We just heard that her potassium level went up a bit higher but that was before she was given a good dose of lasix. Please pray that her potassium and blood pressure levels go down. We will update later.

Karen and Joe

Saturday, December 5, 2009

Back in the hospital

Friday 11:30 p.m.

Alison awoke this morning to the sound of her feeding tube beeping. After an hour or so of attempting to unclug her tube, we were on the phone with Yale. They wanted her to come in but we were able to persuade them to allow her to stay home if she was able to drink and eat high protein and calorie drinks, etc.-one challenge diverted. Little did we know that more challenges would lie ahead. The morning continued with Jen coming by to help her mom and dad bring all the Christmas boxes down from the attic. Mission accomplished and then onto giving the dogs their baths. All was going well at the Cubbellotti's. While mom started to unpack the boxes, Alison awoke from a nap in the recliner. Mom knew by the sound of her voice that something was not right. Alison was having trouble breathing. Luckily, we still had oxygen in the house from before the transplant. We put the oxygen on but Alison's breathing was still challenged. Off to Yale we went. After a couple of hours in the emergency room, Alison was admitted. With pain medication, she is resting comfortably. Her blood pressure is quite high, which is concerning but mom just spoke with the doctors who will monitor Alison closely throughout the night and then we will see if they will put a drain in and tap some of the fluid tomorrow. Dad is staying overnight with Alison. Mom came home-with Christmas decorations everywhere, mom tried to "pull it together". The energy level quickly faded and now it's off to bed to rest up for what lies ahead. Please pray that Alison's blood pressure is controlled throughout the night and that the doctor's will be successful in their interventions tomorrow.

Good night to all,
Karen and Joe

Friday, December 4, 2009

Talk, smile, laugh.....

Friday, 9:15 p.m.

So Thursday turned out to be a very long day. We arrived at Yale at 8:30 a.m. for bloodwork, waited until around 11:OO to see a doctor who then called Dr. Emre. Dr. Emre wanted an ultrasound to get a sample of fluid from Alison's abdomen and then perhaps drain some fluid. Well, it was decided after an initial ultrasound in the transplant clinic that we would need to go over to the hospital to have an ultrasound done by a technician and then make a final determination as to whether Alison would need to go to Interventional Radiology to have fluid drained. Well, we couldn't get an appointment until 2:30 p.m.-more waiting for Alison without being able to eat or have the tube feeding. Finally, the ultrasound was done, Dr. Emre was consulted and we were told that they would not tap the fluid and we should go home and come back in the morning to see Dr. Emre. It was now almost 4 p.m. and needless to say, we were very, very frustrated. This was a very long and challenging day for Alison-she had only been out of the hospital for a day!!! Anyway, we headed home and Alison had an "OK" night. She decided to try and sleep in the recliner to see if she would get a more restful night.

We headed back to Yale this morning. With prayers being said, we arrived for bloodwork. After waiting again for a couple of hours, we finally saw Dr. Emre. Alison's white count had come down-that was good news. Other components of her bloodwork looked good also-Yeah!. She did have more fluid build up though, so Dr. Emre decide to start lasix again. If, Alison's fluid does not lessen, she will have a drain put in her abdomen on Monday. This was not good news, so we pray that her body along with the lasix will lessen the fluid this weekend. The good news is that Alison is probably feeling the best she has felt in a very long time. Once home, we had a relaxing evening, making pizza. Alison's roommate, Marissa joined us-it was so nice to see Alison enjoying some time with a friend. Her legs and ankles were pretty swollen by bedtime, hopefully that will be better tomorrow. Our cousin, Marianne brought Alison a special gift tonight, which she just loved-a beautiful frame that said, "Miracles Happen" and on the back she printed special excerpts from the blog. We certainly do know that miracles really do happen, we were reminded of that today as we got a glimpse of the "old" Alison. Yes, miracles do happen-we thank our John for giving us the gift of watching our daughter, for the first time in a very long time-talk and smile and laugh.
Much love to all,
Karen and Joe

Wednesday, December 2, 2009

First night home

Wednesday, 6:50 p.m.

So, Alison's first night at home was a bit rocky. She did not sleep well, she just could not get comfortable. Maybe she missed her hospital bed-nahhhhh!!!! She also had a low grade fever, which got us a bit alarmed. I called the transplant service and the doctor on immediately contacted Dr. Emre. We were told that we could give her tylenol and if as long as things did not get worse, we should come in to see Dr. Emre in the morning-ugh! The last thing that Alison wanted to do was go back to Yale today. She no longer had a fever in the morning, so we called and asked if we could wait until our appointment tomorrow. Dr. Emre said that was fine but to watch her very closely. Overall, it was a good day. Alison ate pretty well (for her)-it was so nice for the three of us to sit at the dinner table together. With dogs by our side, it was great! Alison was able to take a shower, walk a bit (around the house that is, she said it was too cold outside-she gets cold very easily), and do her breathing exercises. She was quite tired after her shower and continues to have pain with her back but overall is doing better. John's dad called today, he was so excited for Alison to be home. John is doing well. I was able to take Corbin for a walk with my friend, Sandi. It was wonderful to breathe the fresh air, get some much needed exercise and chat. I think Alison liked the 45 minutes she had to herself-thank goodness for cell phones though.

Well, hopefully tonight will go well. We need to be at Yale bright and early tomorrow for bloodwork and an appointment with Dr. Emre. Hopefully, that is all and we will be home by mid-day. We also have a dear friend who is going in for surgery tommorow, we have no doubt that all will be fine. Please pray that all goes well for everyone.

Much love,
Karen & Joe

P.S. Thanks to many for the "Welcome Home" emails. All the words of joy and encouragment are so heartwarming. We are so blessed to have such great friends and family.

Tuesday, December 1, 2009

Homeward bound it is!!!!

Tuesday, 11:30 a.m.

So, after a long night (Alison was having abdominal pain)we were unsure of what would happen today. Dr. Emre came in this morning though and still felt it was safe to go home. Alison is a bit nervous, she does not want to come back.! I told her that calm and positive thoughts are important. Karen, the massage therapist and reflexologist from The Dignity Project is here now. Her presence and skill are exactly what Alison needs. It is just remarkable how Alison feels after a session with Karen, hopefully we will be able to continue after discharge.

Joe will be here shortly-for the "big move". I think we accumulated more this time then last, of course, this hospitalization was a bit longer than the first.

We are all really looking forward to being at home together. Although, Alison still has a long way to go with tube feedings and ongoing follow up visits with many doctors, we are hopeful that the most difficult times are behind us.

Our thoughts now turn to Christmas, the most beautiful season of all. Alison is looking forward to making gifts for family and friends and we are both looking forward to baking cookies with Jen. Decorating the house and trimming the tree with all of us will be wonderful. We have so much to be grateful for and to look forward to. Please pray that she will feel better and better every day and be able to enjoy this new start to her life.

Happy Holidays!

Much love to all,

Monday, November 30, 2009

Monday, Monday......

Monday, 9:00 p.m.

So Alison awoke this morning not feeling well. She had pain in her chest again-our first thought was, "oh my gosh, here we go again!". A chest xray was ordered but all looked pretty good. As the day went on, the pain persisted but we thought that it was perhaps from the feeding tube. Alison seemed to be "dealing with it". Dr. Emre came in in the afternoon and said that he thought Alison may be able to go home tomorrow. We would get an ultrasound of her abdomen and remove the drains. If all went well and her bloodwork looks good in the morning, then off to home we will be going. The major concern at this point is Alison's nutritional status. She would go home with the feeding tube for a couple of weeks. Hopefully, at that point, she will be strong enough to just eat on her own. Well, after the ultrasound, Aunt Terri came to visit. The drains were then removed, which was pretty stressful for Alison but she survived.

We spoke to Dr. Cenera, President of Sacred Heart, tonight. He has been so wonderful to both Alison and John and to our families. His calls and concern are so comforting. We also spoke with John tonight. Although we have kept in close contact with his parents, we had not had many opportunities to speak with John directly. Hearing his voice was wonderful. He is back at school and sounding great. We talked about him taking it easy, a challenge for a young man eager to get back to his life but important none the less. We reminded John that we are just around the corner, we hope that he will call upon us if he needs us or feel free to visit if he wants-our home is his home.

Please pray that all looks good in the morning and that we will be homebound tomorrow.

Joe and Karen

Sunday, November 29, 2009

A Good Weekend

Sunday 10:15 p.m.

So, the return to the hospital was tough for Alison-being home, although wonderful, was a bit of a tease. Visits from hometown friends though made Friday evening much better. Saturday began to give us a glimpse of our "old" Alison. She was feeling better but heard news that her stay at the hospital may be another week-that did not make her a happy camper. But then, visits from friends again made the evening much better. Alison even gave mom the "go ahead" to spend the night at home.

Today went well. Alison had a nice visit with her Godfather and then did some crafts. It was great to see her able to do something she enjoyed. We then had a special visit with John's mom, dad and sister. It was so nice of them to make that drive, once again, to Yale. We really enjoyed spending time with them. Although we feel that we get to know them a little better with each visit, we also feel like we're spending time with old friends. John seems to be doing well-he may be going back to school very soon. The evening closed with a surprise visit from three girls who are sisters in the UNH chapter of Alison's sorority. Although they do not know Aliosn, they came bearing presents, including a beautiful, handmade blanket, which represented Phi Sigma Sigma. Alison was very touched.

Dare we say-Alison really seemed to turn a corner this weekend. She seems to have begun a trip down the road to recovery. Let's pray that she is able to stay on course-the one that will soon lead to home.

Here's to a good week,
Karen and Joe

Friday, November 27, 2009

Thanksgiving at home for John and Alison and blessings from the Pope

Friday, 10:00 a.m.

Our Stephen came in on Wednesday. He stayed with Alison so that mom could go home and make some Thanksgiving favorites; yams, cornbread (Alison's job since she was a little girl),broccoli casserole (Alison's favorite) and Stephen's birthday cake (we haven't had an opportunity to celebrate yet). In the midst of this surreal world, my sister in law, Dawn and I brainstormed a number of plans for the Thanksgiving holiday-we really had no idea what was going to happen but I had to "dabble" in making a few things and Dawn was "off and running" with preparations for a huge meal-we had no idea where we would eat or how we could possibly all be together but we would just start to prepare and somehow all would work out. We knew that any plan that we would come up with would have to be tentative as there was a slim chance that the doctors might let Alison come home for Thanksgiving day-all would depend on how her bloodwork looked Thursday morning. After a long night, Stephen (a bit sleep deprived) called and our prayers were answered once again, Alison's creatinine level had come down a bit-enough for the doctors to let her come home for Thanksgiving-yeah!!! As Joe left for the hospital and Jen came home to help mom, we called Dawn and gave her the update. "The plan" had now changed, God bless her--she was now bringing dinner to our house-the turkey, the trimmings, dessert-even the nuts.

Oh my gosh, this was like deja vue.-history repeating itself. Twenty four years ago, as we had a new baby at home and another newborn in intensive care, my mother in law did exactly the same thing as her daughter was now doing-bringing Thanksgiving dinner with all the trimmings (even the nuts) to Joe and Karen's We are so very blessed---many thanks to Dawn (and our brother in law, Danny-for his suport). I know they were as thrilled as we in being able to have all of us together, including Pop, for the holiday--- and Dawn really made it possible to celebrate with all the traditions. As we sat at the dining room table with Alison alongside us, we each took a piece of cornbread and said what we were thankful for-emotions were high and love was strong-what a special moment, what a special day. Alison worked hard to join in, her nausea worked hard to halt her-I think Alison won! Alison had a few visitors; Aunt Terri and Jamie and some of her close friends-all in all, she had a wonderful day-and so did we.

We got to talk with John's family. We knew our news would make them very happy. John is doing well-all was right with the world. We also received a call from Dr. Cernera, the President of Sacred Heart University-he had just returned from Europe where he met with the Pope- yes, THE Pope. We were in astonishment as he told us that in his brief time with His Holiness, he shared John and Alison's story and that the Pope would pray for them. God has been so good to us-with blessing after blessing.

Well, it's back to the hospital today-the doctors said noon, Alison said 2, we know who we're betting on.

We hope that your Thanksgiving was a special as ours. Have a great weekend.

Love to all,
Joe, Karen and family

Tuesday, November 24, 2009

The presence of God.....

The morning started off with cautious news from Alison's teams of doctors. It was one of those days, where we just didn't know what to expect as we waited for Alison to go for a test to take a look at the abscess in her lower abdomen. Upon completion of the test, the doctor told us that Alison now had a fistula, which was potentially serious-not the news we wanted to hear.

While we waited for Alison to be transported back to her room, her nurse called to see when we would be returning. Upon our arrival, we were greeted by Father Gerry from Sacred Heart University. We had a nice visit, which included a blessing for Alison. A short time later, one of Alison's doctors walked in and told us there had been a mistake and Alison did not have a fistula-we were stunned. Alison and I both thought the same thing-Father Gerry! I asked the doctor if he was an angel that Fr. Gerry had just sent-he said, "perhaps so". I had to call Father right away-God had certainly sent us a miracle-Father Gerry agreed!

Alison's kidneys seemed to be working hard toward recovery today-we will see what her labs say tomorrow. The doctors just started the feeding tube again, let's pray that she tolerates the feedings better tonight.

Well, we have certainly felt the presence of God many times throughout these past weeks, today was just so startling. My sisters would be happy to know that--"I really felt the earth move". We are truly blessed by all of the prayers that continue to be said for our Alison and, of course, for John, too. Many thanks to all of you.

As always, love to all,
Karen (& Joe, too!)

another Tuesday morning update......

Tuesday, 10 a.m.

Alison had a challenging evening yesterday resulting in the doctors turning off her feeding tube. She asked for another x-ray to look at the placement of the tube and it appears that it is coiled in her stomach (she always seems to know when something is wrong). She is having a procedure today with Interventional Radiology to take a look at the drain in her lower abdomen-after that we will deal with the feeding tube. Her creatinine level is up to 5.1, however she is showing clinical signs of kidney recovery. The doctors are cautiously optomistic. Please pray for her continued strength, recovery of her kidneys and control of infection.

We spoke with John's mom last night. John seems to be doing well. With all that is going on with Alison, it is so comforting to know that John appears to truly be on the road to recovery. He is an amazing young man who has been through so much for our daughter, we just want for his recovery to go "full steam ahead" and for him to be back enjoying his senior year in college. We know that John's and his family's hearts ache over the difficulties that Alison is experiencing but we must not forget where we were prior to October 19th and continue to remember how grateful we are, because of John's amazing gift, for her to now have a strong and healthy liver. This renewed strength is what will get her through these current challenges.

We will update when we have more news.

Karen and Joe

Monday, November 23, 2009

Here's to hoping and praying for strong kidneys....

Monday, 6 p.m.

The feeding tube was placed yesterday and Alison, as always was so strong. Unfortunately, after being placed, the tube needed to be "advanced" further, which was pretty uncomfortable and overwhelming for her. As much as we did not want the feeding tube for her, we are somewhat relieved to know that she is beginning to receive adequate nutrition. It was really so stressful for her to try and eat enough to meet her nutritional requirements as she is nauseous quite often.

Alison's creatinine (kidney function) level went up to 4.5 and a test she went for today indicated that she has acute tubular necrosis (ATN). This means that the recovery of her kidneys this time may take longer-ugh!!! The doctors are watching her very, very closely. They do expect that her kidneys will recover, we are just hoping that her body can endure while recovering and that we will not have to consider temporary dialysis. Please pray that her kidneys will recover soon.

Alison's friend Laura stopped by with her mom after a doctor's appt. at Yale. Aunt Terri also came to visit. Alison was able to enjoy their company, which was nice to see. Mom also had friends come to visit today-it was wonderful to see them and catch up a bit.

John and his mom were at Yale today for a follow up visit. We were hoping to connect but as luck would have it, Alison needed to go for an ultrasound. We will call them later to see how everything went today.

Well, here's to hoping and praying for strong kidneys.

Love to all,
Karen and Joe

Sunday, November 22, 2009

Sunday morning update

10:50 a.m.
Alison's creatinine level (a marker for kidney function)rose to 4 today. This is certainly concerning but expected. The good news is that she is beginning to have clinical signs of her kidney's recovering (labs lag behind but should start to reflect beginnings of recovery soon). The doctors will do an ultrasound to make sure that the blood flow to the kidneys is good. The very challenging news is that Alison will have to go back on tube feeding. This is very upsetting for her. The doctor will be back shortly to place the tube once again. Please pray that she have the strength to endure this next leg of the journey. We will update soon.
Joe and Karen

Saturday, November 21, 2009

Prayers need to continue

Saturday, 8 a.m.

The doctor came in this morning and said that Alison's creatinine level, which reflects her kidney function, has now gone up to a 3. This is certainly concerning although the doctors feel that the level will come back down. Please pray that her level does return to normal. We are very concerned but hopeful that she will get over this development.

My sister in law, Dawn sent me the email below about the power of praying the rosary. I thought I would share it with all of you who are praying for our Alison.

Much love,
Joe and Karen

The Rosary - Simply Amazing! ...

Jim Castle was tired when he boarded his plane in Cincinnati, Ohio, that night in 1981. The 45-year-old management consultant had put on a week long series of business meetings and seminars, and now he sank gratefully into his seat
ready for the flight home to Kansas City, Kansas.

As more passengers entered,the place hummed with conversation, mixed with the sound of bags being stowed. Then, suddenly, people fell silent. The quiet moved slowly up the aisle like an invisible wake behind a boat. Jim craned his head to see what was happening, and his mouth dropped open.

Walking up the aisle were two nuns clad in simple white habits bordered in blue.
He recognized the familiar face of one at once, the wrinkled skin, and the eyes warmly intent. This was a face he'd seen in newscasts and on the cover of TIME. The two nuns halted, and Jim realized that his seat companion was going to be Mother Teresa!

As the last few passengers settled in, Mother Teresa and her companion pulled out rosaries. Each decade of the beads was a different color, Jim noticed. "The decades represented various areas of the world," Mother Teresa told him later,
and added, "I pray for the poor and dying on each continent."

The airplane taxied to the runway and the two women began to pray, their voices a low murmur. Though Jim considered himself not a very religious Catholic
who went to church mostly out of habit, inexplicably he found himself joining in.
By the time they murmured the final prayer, the plane had reached cruising altitude.

Mother&n bsp;Teresa turned toward him. For the first time in his life, Jim understood what people meant when they spoke of a person possessing an 'aura'.
As she gazed at him, a sense of peace filled him; he could no more see it than he could see the wind but he felt it, just as surely as he felt a warm summer breeze.

"Young man," she inquired, "do you say the rosary often?" "No, not really," he admitted. She took his hand, while her eyes probed his. Then she smiled. "Well, you will now." And she dropped her rosary into his palm.

An hour later, Jim entered the Kansas City airport where he was met by his wife, Ruth. "What in the world?" Ruth asked when she noticed the rosary in his hand. They kissed and Jim described his encounter. Driving home, he said. "I feel as if I met a true sister of God."

Nine months later, Jim and Ruth visited Connie, a friend of theirs for several years. Connie confessed that she'd been told she had ovarian cancer. "The doctor says it's a tough case," said Connie, "but I'm going to fight it. I won't give up." Jim clasped her hand. Then, after reaching into his pocket, he gently twined Mother Teresa's rosary around her fingers. He told her the story and said, "Keep it with you, Connie. It may help." Although Connie wasn't Catholic, her hand closed willingly around the small plastic beads. "Thank you," she whispered. "I hope I can return it." More than a year passed before Jim saw Connie again. This time her face was glowing, she hurried toward him and handed him the rosary. "I carried it with me all year," she said. "I've had surgery and have been on chemotherapy, too.
Last month, the doctors did second-look surgery, and the tumor's gone. Completely!"
Her eyes met Jim's. "I knew it was time to give the rosary back."

In the fall of 1987, Ruth's sister, Liz, fell into a deep depression after her divorce. She asked Jim if she could borrow the rosary, and when he sent it, she hung it over her bedpost in a small velvet bag. "At night I held on to it, just physically held on. I was so lonely and afraid," she says, "yet when I gripped that rosary, I felt as if I held a loving hand." Gradually, Liz pulled her life together, and she mailed the rosary back. "Someone else may need it," she said.

Then one night in 1988, a stranger telephoned Ruth. She'd heard about the rosary from a neighbor and asked if she could borrow it to take to the hospital where her mother lay in a coma. The family hoped the rosary might help their mother die peacefully. A few days later, the woman returned the beads. "The nurses told me a coma patient can still hear," she said, "so I explained to my mother that I had Mother Teresa's rosary and that when I gave it to her, she could let go; it would be all rosary in her hand." "Right away, we saw her face relaxed. The lines smoothed out until she looked so peaceful, so young. A few minutes later, she was gone."
Fervently, the woman gripped Ruth's hands. "Thank you."

Is there special power in those humble beads?

Or is the power of the human spirit simply renewed in each person who borrows the rosary? Jim only knows that requests continue to come, often unexpectedly.
He always responds though, whenever he lends the rosary, "When you're through needing it, send it back. Someone else may need it."

Jim's own life has changed, too,since his unexpected meeting on the airplane.
When he realized Mother Teresa carries everything she owns in a small bag,
he made an effort to simplify his own life.

"I try to remember what really counts - not money or titles or possessions,
but the way we love others," he says.

May God bless you abundantly. May Mother Mary ask her Son Jesus to shower you with grace. Please feel free to pass this mail on, especially to all those in despair
so that they might know that they are not alone in their hour of need.

I sent you this mail because I know the power of the prayers of these simple beads
and I wanted to share it with you. Every sacrifice has a fruitful reward.
Every failure has a second chance. We only have to be strong through God's grace and persevere in life's many tests!

May God bless you always!

Friday, November 20, 2009


Friday, 10:10 p.m.

HAPPY BIRTHDAY TO JENNIFER AND STEPHEN. Oh my gosh, we just can't believe that "the twins" are 24 years old. We had a little birthday celebration for Jen at the hospital. Many thanks to Auntie Dawn for picking up the pizza and cake---we missed Stephen but school work kept him in NY---we'll hopefully have a full celebration next week. Happy, happy birthday you two, we love you both very much!

Sorry for the delay in updating the blog. Alison had a pretty rough day yesterday with a great deal of pain on her left side from the tap. The doctors finally decided to give her a new pain drug but found out today that it effected her kidneys. So, now her kidney function has been compromised once again. Her prograf level(anti-rejection med.)is also increasing, which can also effect her kidney functioning, so the doctors have stopped the pain medication and halted the prograf for now. We're hoping that this will result in her kidneys stabilizing again.

Alison's roommates and friend from college came by to visit last night. Then her friend Laura, who started her holiday break yesterday, came to see Alison at the hospital. She stayed overnight and through the day with Alison. Alison was pretty nauseas throughout the day, but it seemed like she was able to still enjoy spending time with Laura. With Laura staying overnight, Alison was a little more open to her mom going home. We actually had a scare with our family dog, Riley so mom was very eager to get home to check on him. Our niece, Melissa took Riley to the vet yeterday, God bless her. There are not too many people who could manage a three year old and two year old while getting a 100 pound labrador retriever up in an SUV-she is just remarkable-thank you, thank you, thank you goes out to her-she is just the best!! The vet wanted to keep Riley overnight but Joe explained the circumstances and let him come home for the night. We really thought that this was the beginning of what we have feared for him but today he seemed fine, we cooked him special food and watched him carefully and, thank God, he seems to be doing just fine. Looks like he just needed his mommmy.

When we got up to the hospital today, Alison was starting some crafts with Laura. It was so nice to see her doing something she enjoys with her friend. As the evening went on, we could see that she was getting very tired. We're hoping that this new situation will resolve and that she will feel better tomorrow. She really needs to start eating-even just little bits at a time. Please pray that tomorrow will be a good day for her.

We spoke with John's dad tonight. John seems to be doing well. It is always so wonderful to talk with them.

Well, we hope our next post will be a good one.

Much love to all,
Karen and Joe

Wednesday, November 18, 2009

Procedures are completed

Wednesday, 8:20 p.m.

We went down for Alison's procedure at 3:00 and returned to her room at 7:30 p.m. Many thanks to Sandi for spending the afternoon with me-it really helped to have the company. The doctor tapped 900 cc's of fluid from around Alison's right lung and 800 cc's from around the left lung. He also tapped 300 cc's from an absess in Alison's lower abdomen and put a drain in. Alison now has two drains. She is pretty uncomfortable but hopefully, with pain medication will be able to get relief. We will get more information on what this all means when we see Dr. Emre in the morning. Please pray for a quiet night.
Karen and Joe

procedures at 2:30 p.m.

Wednesday, 12 noon

We were just informed that Alison's procedures are scheduled for 2:30 P.M. We will try to update later today as to results. Please pray that all goes well.
Karen and Joe

More procedures today

Wednesday, 9:30 a.m.

Alison went down for her second catscan in two days at 12:30 a.m.-so,it was again a late night. We just received news that the fluid in her lower abdomen is loculated (spelling?), meaning that it is encapsulated. This means that there is a more complicated procedure to remove this fluid. So, we are now waiting for the doctors to schedule anesthesia along with interventional radiology to remove the fluid from the area around Alison's left lung and her lower abdomen. She was scheduled with IR for 11:30 this morning but with now needing to involve an anesthesiologist, God knows what time these procedures will take place. She cannot eat and is uncomfortable, so we are hoping that the procedures will take place sooner than later. We will update when we know more.
Karen and Joe

Tuesday, November 17, 2009

catscans, infections and contrast-oh my!!!!!

8:35 p.m.
Catscans, infections and contrast-oh my!!!! Sorry, still caught up in the Wizard of Oz, which was recently on TV-really if we don't make light of this situation once in a while, we're really going to lose it.

So, Alison ended up going for her catscan at 2:00 a.m. We got the results today and it appears that Alison has an infection in her lower abdomen. During the day, the doctors discussed having the fluid around her left lung and the fluid in her lower abdomen tapped tomorrow. We also were told that she will need to be on IV antibiotics for two weeks. Since the antibiotics were started last Friday for other reasons, we will need to be here in the hospital for at least another 9 days-UGH!!!!! That would have us in the hospital for Thanksgiving. Dr. Emre said that depending on how things go, perhaps he can let Alison come home for Thanksgiving Day and then maybe go back in the hospital for a couple more-he isn't promising anything-we'll have to see how things progress.

Now we just heard that Alison needs to go for another catscan tonight-will this ever end?. Alison is such a trooper-she just mixed that enormous amount of contrast with crystal lite and started drinking it-AGAIN-not an easy task for most-definitely, more challenging for her with the state of her stomach, crohn's etc. We are so very proud of our daughter-it's been a really tough day, with the news about the infection and now looking at a much longer stay in the hospital. Although we know that she is pretty bummed-she is being so cooperative with pretty unpleasant circumstances. It's close to 9 p.m now, which means that the earliest we'll be going down for the catscan is 11:30 p.m.-well, I guess that beats the 2:00 a.m. catscan from last night. Wish her luck! We'll update tomorrow.

Love, Karen and Joe

Monday, November 16, 2009

The start to a new week

Monday, 11 p.m.

The morning was busy with many specialists coming in to consult-this is often a frustrating process. Alison also had a visit from John and his mom. It was great to see them both. John had a follow up visit with good reports. It appears that he is truly on the road to recuperating-yeah!! Alison continues to have pain on her left side and lower abdomen. She received a visit from Karen, who is a massage therapist and reflexologist from the hospital's Dignity Project. She also had a nurse from the Project who did reike and guided imagery with her. It all seemed to be beneficial. Alison went for an ultrasound this afternoon. We just received the results, which indicate tht she now needs to go for a catscan tonight. She is now drinking contrast and will go for the actual test somewhere after midnight. This is a surprise and a bit concerning as the doctors felt it was something that cannot wait until morning and needs to be done tonight. We will try to update in the morning as soon as we have more information. Again, please pray for good results.
Good night,

Sunday, November 15, 2009

A good night's sleep can work wonders

Sunday, 10:00 p.m.

Alison was very mixed about her mom going home Saturday night. It was apparent though, that after another week in the hospital, mom really needed to get a good night's sleep. In the morning, we knew it was the right decision as mom felt so much better- better able to go on in supporting Alison's needs. We all just can't wait until Alison can be home in her own bed and she, too, can get a good night's sleep. The comforts of home can certainly work wonders.

When we arrived at the hospital today, Alison seemed a bit quiet. She was ready to take a shower, after which she seemed to feel better. She does continue to have a good deal of pain in her left side, hopefully the transplant team will soon be able to detect the source. In speaking with the doctor today, though, it seems that, overall, things are moving in the right direction-we're hoping for a potential discharge on Tuesday or Wednesday. Aunt Terri came up, we all had a nice visit. We spoke with John's family and it sounded like he had a nice day, taking a long walk. It's great to hear that his recovery is progressing. They will be up to Yale tomorrow, we're hoping to be able to spend some time together. We also called Karen, she is from the Advanced Care Team. She provides alternative services like massage and reflexology. These services have been very helpful for Alison, hopefully she'll be able to come tomorrow.

Well, here's to a new week-filled with increased health and comfort and hope for a renewed spirit.

Have a good one,
Karen and Joe

Saturday, November 14, 2009

Yesterday and Today

So, this is the second attempt at writing this post. The first one did not go through. Yesterday was up and down. Stephen was with us for the day, that was certainly one of the "ups". Alison also had an ultrasound of her liver yesterday. While she was having the test, she sent a text to John that said, "I am having an ultraound of OUR liver". That just brought tears to my eyes, and again as I write this----this is such an amazing and often overwhelming journey that we continue to live along with John and his family. Last night was "one of those nights". Alison had challenges with her breathing and we ended up with a number of doctors, nurses including the ICU staff in her room. They did an EKG and all looked fine. Doctors are pretty sure that the frightening incident when we could not get Alison to respond and the challenges of last night, are due to the pain medications. We are actually relieved that we may have an explanation and will be talking with the doctors about a plan to go forward.

This morning we had many doctors come in; liver surgeons, hepatologist, infectious disease, pain service and renal specialt. We know that Alison has sustained injury to her kidneys, which has been quite concerning. The renal attending did tell us today though that she is confident that Alison's kidneys will recover and is happy about her numbers today. Alison is still having abdominal pain but will hopefully find relief soon.

Auntie Dawn came to visit today. Alison, Joe and I enjoyed her visit-Alison loved the gift from Auntie Dawn's friend as well as the beautiful pink rose from Auntie Dawn. It was great for all of us to see her and chat.

Here's to a weekend that will only get better as each hour passes.

Karen & Joe

Thursday, November 12, 2009

Procdures completed

Thursday, 10:00 p.m.

So, Alison visited with her Aunt Sharon and Aunt Terri this afternoon. She rose to the occasion-and enjoyed their company. Alison then went down for her procedures and had 1,800 cc's of fluid tapped from around her lungs and 1,300 from her abdomen. They did put a drain in her abdomen but it is not draining much so, hopefully it will come out tomorrow. Alison was pretty sleepy when she came out of the procedure. Stephen came in on the train, bus and taxi to visit with Alison tonight. Alison was kind of a silly patient while Stephen and Joe were here-a little loopy but also "under the weather" a little fever (not sure why), pain in her shoulder(probably referred pain from the fluid tap)and a high heart rate (152)-probably from the pain. All of this, except for the fever, has become the routine after a fluid tap but it is nonetheless, pretty challenging for Alison. Let's pray that she can get some sleep tonight and be in a much more comfortable state soon.
Here's to a quiet and uneventful night,
Karen and Joe

Alison having procedures done

Thursday, 4:15 p.m.

Alison is in having the fluid tapped around her lungs and in her abdomen. The Interventiontal Radiologist thinks that they will place a drain in her abdomen as well. Alison seemed better as the morning went on and into the afternoon. She seemed to find a position that made her abdominal pain more tolerable and the oxygen was helping to make her breathing tolerable. Hopefully, she will be feeling much better after the procedures and be able to eat as she hasn't really eaten much all week. I will try to update again tonight after the procedures are over.

We spoke with John's dad this morning. John is doing well but still uncomfortable. We pray that he will turn the corner to feeling good soon. He and his family certainly deserve some quality, relaxing and enjoyable family time together. They are so concerned about Alison-checking on her at least daily-we are so very lucky to have them in our lives-certainly, an enormous blessing in the midst of this very challenging journey.

Love to all,
Karen & Joe

Too much excitement for one day

7:50 a.m.
Alison had her catscan last night. The results show that she definitely has fluid in her abdomen and around her lungs. The doctors are deciding this morning whether they will tap the fluid or put in a drain. Alison continues to be in pain. With all that has occurred thus far, one would think that nothing could "throw us" at this point. But, how wrong we were. During the evening, we attempted to wake Alison. She was unresponsive! Needless to say, this was extremely frightening. The doctor that was in the room, left to get her attending physician. As I continued to scream Alison's name, so many thoughts ran through my head. Finally, a nurse was able to arouse her----seeing those beautiful blue eyes look up at me was the most wonderful site. The doctors do not have an explanation for what happened, hopefully it was an isolated incident. This was definitely too much excitement for one day-no, for a lifetime. The rest of the night went somewhat quiet, although, I have to admit that I woke Alison several times before feeling comfortable with letting go to sleep. This morning Alison is in pain again. Hopefully, decisions will be made to relieve her pain and move her forward.
I will try to update later today,
Karen (and Joe)

Wednesday, November 11, 2009

Prayers for the day

Wednesday, November 11th 11:15 a.m.

W'ere hoping that the day will get brighter as it goes on. Alison is still in significant pain today. The new pain medication that was introduced last night, is only minimally working however it is making Alison very sleepy. That was helpful last night as it allowed her to get some sleep. Alison's abdomen is getting progressively distended. It looks as if they will be doing a catscan of her chest and abdomen today. It is scheduled for 5 p.m. but doctors are strongly advocating for it to be done sooner-it's still amazing to me how many loops one needs to jump through to get things done in a timely manner. The good news is that Alison's potassium level has remained normal. We have not gotten her prograf level yet today. Alison will get albumin and a blood transfusion today. Doctor just came in with an update. They are giving Alison some specific medications to help her kidneys handle the catscan contrast. I have now been asking a lot of questions about the kidneys as I am hearing them referenced quite a bit this morning. I have to admit that it really feels like we are taking several steps backward with this hospital visit. I know that we need to stay positive but some days it's really difficult to do that.

As I am writing this, there is a piece on the television about the power of prayer for our soldiers. Perhaps God just sent me a message to not lose faith and keep praying. It is a very timely message-so I ask you all again to pray for Alison and that she is able to rise above these next set of challenges.

I spoke with John's dad today. John is doing well but is experiencing discomfort. Please pray that his pain and overall discomfort will end very soon.

Let's pray that today goes well, that Alison's body is able to tolerate all the medications and that both she and John are free of pain and discomfort. Please pray also for all of our veterans-we thank them for their service to our country.

In gratitude,
Karen (& Joe-my favorite veteran)

Tuesday, November 10, 2009

Tomorrow is a new day

Today has continued to be a rough one for Alison. The abdominal pain caused by the medication (kayexalate)that brought Alison's potassium level down has certainly been a blessing and a curse. It was critical to get the potassium down and thank God, that was achieved with the medication but the abdominal pain has been intense.
Tuesday, 7:45 p.m.

We're not sure if her body has had a more difficult time with it due to her crohn's disease but we do know that it has been almost unbearable. The pain service came in and they have started Alison on a new pain medication, hopefully relief will come soon. Alison's prograf level has come down but is still too high for her to go home.

I spoke to John's dad and mom today and it sounds as if John had a good day. That news truly made this day bearable. John's mom also shared with me that when they had difficult days, it was helpful to remember that "tomorrow is a new day". That was helpful as sometimes when we're in the midst of our challenges, it's easy to forget that "this too shall pass". I pray that the night will go quickly and that Alison's pain relief and spirit will rise along with the morning sun.

Here's to a new day,
Karen (& Joe, too!)

Another Update

10:30 a.m.

Still waiting on the prograf level but the doctor did indicate that we will be here in the hospital at least until tomorrow. Alison is still experiencing a great deal of pain-the liver team is currently being consulted. Just found out that they will do a chest x-ray. I did speak with John's mom and it appears that he will not need to come to Yale today. Our conversation was cut short by happenings here at the hospital but it sounds like he is doing "OK" today-some good news on a rough day. It's so very difficult to see Alison is pain once again-these challenges really need to end soon.

Tuesday mornng update

So, it was a very long and uncomfortable night but we got news that Alison's potassium level is now close to normal-thank God!! We will now wait for the prograf (anti-rejection medication) level. Alison also continues to have abdominal pain, doctors are talking about how they want to assess that. So, it looks like we're in for a day of potential tests and playing the "wait and see" game again-getting Alison's pain under control is our priority. We have not talked with John's family yet. We will try to provide updates later today. Thanks to all for your ongoing concern.
Karen (& Joe, too)

Monday, November 9, 2009

Back in the hospital

8:30 p.m. Monday

Both John and Alison had follow up appointments today. We crossed paths in the Transplant Center for only a few moments this morning. We were hoping that we would be able to spend a little time with John and his family but Alison's early morning appointment turned into a full day affair, ending in a hospital admission this evening. It turns out that Alison's potassium level was quite high, this is quite concerning as it can greatly effect her heart. Also, her prograf (anti-rejection medication) level was quite high which can have serious neurological effects. The attempts during the day, had minimal effect on the potassium level so the doctor's felt that it wasn't safe for Alison to go home. Alison is also having some very uncomfortable abdominal pain-we're not actually sure of the source but will hopefully get answers soon. So, here we are back in 7 West, in the exact same room. We have no clothes or other "necessities" like phone chargers (if you call and I don't answer, it probably means that my phone died) but we will make due. The good news is that Alison did get the feeding tube out today. It was actually malfunctioning early this morning, so they decided to remove it. John's condition also had its challenges today and he may need to come back up to Yale tomorrow. As much as we would love to see him and his family, I prayed in the chapel this afternoon that John's challenges will resolve and he and his mom will be able to stay home to rest and that his dad will be able to get back to work. Joe did get back to work today, hopefully he will be able to continue. Please join us in praying that both John's and Alison's roads to recovery will begin to get smoother.

Saturday, November 7, 2009

Home Sweet Home

Saturday, November 7th

Sorry it's taken so long to update. It is wonderful to be home, especially now that we know that John and his family are home, too!!!! I spoke to John's mom this morning, she was making pancakes (what a nice mom) and chuckled as one was shaped just like a liver-perhaps, God was reminding us to enjoy the "lighter" moments in life-what a great sense of humor He must have. Stephen and John met yesterday, now our families, together, are complete. It seemed as if John and Stephen were immediately comfortable talking-I was not surprised as that is how it's been for all of us-there has truly been divine intervention each step of the way. When we left John's room, Stephen turned to me and said, "Mom, I feel like I've known them, they look so familiar to me". I couldn't believe it, that is how each one of us has felt. We will miss seeing John and his family each day but are sooooooo very happy that he is home safe and sound. His mom said that he had a pretty good night-we are so relieved, he has been through so much. Hopefully, the rest of the weekend will be relaxing and uneventful.

Coming home Wednesday night was a bit overwhelming for us. As we attempted to get the feeding pump up and running, it was in Hungarian-after a consultation call to the medical company-we were able to get the pump back to english-what a relief!! Alison had a rough couple of nights and then a very full day back at Yale yesterday. The day started with bloodwork at 8:30 a.m, appointment with Dr. Emre, albumin infusion and then a fluid infusion (they determined that Alison was dehydrated) and finally off to the pain doctors-after stopping at the pharmacy, we arrived home at 5:45 p.m.-what a day!! Stephen accompanied us for the day, and was such a great help and support. Since the transplant center won't allow us to stay with Alison for her infusions, we were able to visit John and then had lunch together in the hospital cafeteria. Lunch with my son was such a nice treat, even if at the hospital-having one-to-one time to catch up with him was so special.

Today has gone well, so far. Alison's pain seems to be pretty much under control. She is up in the recliner watching movies with Jen giving her a pedicure. Jen says she will be taking appoinments in the near future (haha).

I have to say, since we've been home, I have had flashbacks to the days when I brought my babies home from the hospital. Unpacking, getting settled, figuring out a feeding schedule, flower deliveries, family and friends dropping by with meals (what a Godsend that has been) and visiting, checking on my "baby" when she sleeps and trying to fulfill her needs and keep her comfortable and content. I guess in a way, all the similarities are not surprising...after all, our "baby" has started a new life; reborn in a sense. How blessed are we to experience the miracle of life for a second time? We send our love to John; we hope your day is going well, honey.

Much love,
Karen and Joe, too!

Thursday, November 5, 2009

First Full Day at Home

So today was my first full day at home. I got to sleep in my own bed last night which was kind of weird. I have to sleep elevated because of the stitches pulling and the feeding tube being in. My head needs to stay above my stomach so that everything runs as it should. Today was a little rough because of the intense chest pain that I am still having. Every time I swallow I get a sharp pain in the right side of my chest, not down the center as you would think. The doctors are uncertain as to why this pain is there, but they assume it is either from the feeding tube being in and my body just needing to get used to it or I may have esophagitis, inflammation of the esophagus. We had the home health nurse come today. She was helpful to my mom, to reassure her that she was calculating the feeding formula and pump correctly, giving me the injection properly and checking my fluid drainage. I knew my mom was doing a good job, but she needed the reassurance. I did go for a walk with my mom to the end of the driveway, twice today. I didn't realize that it was so cold out-gee, time sure does fly when you're having fun (haha!) I have my first follow up appointment with Dr. Emre tomorrow, so hopefully he will have come up with a plan so that this pain goes away, since the pain medications do absolutley nothing. It's amazing to me that this is actually the only pain that I am really having. I would feel like a million bucks with this new and amazing liver of mine if it weren't for this darn chest pain. Hopefully Dr. Emre has some suggestions for me tomorrow.
Dr. Emre and the transplant team decided to keep John for another day just for observation. They wanted to make sure that everything was okay with him eating and not having an IV in. He seems to have done really well all day, and should go home tomorrow. Thankfully he will be home for the weekend, and can get some nice rest at home all weekend long. John said his mom brought him chicken soup today, which was great. I know my mom's chicken soup always makes me feel better. John is learning that home cooked food will always be better than hospital food (haha); though doesn't complain.
Stephen is on his way home as I am writing this and he is going to come to the appointment with us tomorrow. Afterward we are going to stop by John's room so that my almost donor can meet my full donor. The three of us will have a special bond that no one will ever quite understand. I am so glad that all of my immediate family has now gotten to meet the generous and amazing person that saved my life.


Wednesday, November 4, 2009

Good news all around

Mom went down to check on John early this morning hoping for good news on his test. And...NO MORE OBSTRUCTION! WOOHOO! Go John! This is such great news and we are all so happy for him as I'm sure he is excited, himself. I'm not quite sure if he got his cinnamon toast yet, but I know if he hasn't he will soon; he really deserves that with everything he has done for me and has been through. He is still one of the most amazing people I have ever met and am so thankful for him and his family.
Dr. Emre came in to see me this morning with his whole team and said that I am still going home today as planned. I am still having chest pain when I swallow so they will do a few tests before I go home, but we will just try to control the pain with medications for now. I have to go back to the clinic twice a week for a check up's for a while, so no REAL break from the doctors, but better safe than sorry. I will be having my first follow up appointment on Friday and another on Monday. Accompanied with Monday's appointment will probably be an endoscopy to make sure that there are no perforations or larger tears in my esophagus causing this chest pain. Dr. Emre doesn't think that there are, but he wants to just make sure. Because like always, when everyone else is a horse...I am the zebra. When things are extremely rare, they still seem to happen to me. But please continue to pray that only good news comes out for the next few months, John and I really don't need any MORE issues than what we've had. Dr. Emre also told me that he will be sending John home as well either today or tomorrow...which is music to MY ears. I am so happy for him and hearing this trumps any aggrivation I have with this feeding tube. Knowing my angel and life saver is healthy enough to go home, is the best news I could ever get.

I can't wait to get home and sleep in my own bed tonight, I'm sure John is thinking the same thing about his own bed. You never really realize the simple things you take for granted...


The Other Side of the Mountain

7:30 a.m. Wednesday

The unexpected news that Alison would go home today was certainly "music" to our ears. To go home, however on a feeding tube, fluid leaking from the abdomen and daily injections is certainly overwhelming. Sometimes we are just not sure how much more Alison can handle. But it is important for her, for us to remember that she has reached "the other side of the mountain". We need to remember that prior to the transplant, all the pain and suffering were signs that Alison's liver was dying, she was dying. Although I have used that word before, the reality of what could have been, had we not been blessed with John............is just too much for words, for thought, for our hearts to bear. Now, each step of this journey, although still challenging, is leading Alison to recovery, to health. There will still be "peaks" to climb but Alison must not forget that she is a champion climber, one who has made it to the "other side of the mountain". Now, the "fog" just needs to clear a bit for her to begin to truly enjoy the view-we promise her that it will be spectacular.
Much love,
Joe and Karen

Tuesday, November 3, 2009


GREAT NEWS!!!!! I AM GOING HOME TOMORROW!! It's amazing that I get to go home, but this is no easy feat. I am going home with an NG tube that goes up my nose and down my throat which is giving me all my nutrients for the next 2 weeks, at least. I also have to get albumin infusions weekly and blood thinner injections daily. So as awesome as it feels to go home, there is a lot that I'm going to have to deal with; which is going to stink. Please pray that this stupid tube can come out of my nose in fewer than two weeks as I am already hating it. It is extremely uncomfortable and somewhat painful. The doctors say I will get used to it; let's hope that happens like...tomorrow. The purpose of this tube and the specific stuff going through it is that it bypasses my lymph system. By doing this, my lymph system will close off like it should've done on it's own. If/when it does this, the fluid that is coming from my incision should turn clear and eventually slow and hopefully stop all together. I still may need to get a few stitches to close up the open part of the incision, but we will only know once this treatment starts to work. I really hope that the next 2 weeks goes by extremely fast, because this isn't going to be easy for me. No eating for 2 whole weeks is going to stink for this Italian girl. I LOVE my food and desperately want to eat. But, if doing this treatment is going to fix the problem, then I need to do it.

As much as these next 2 weeks will be hard, I have to try to remember how good I am feeling overall. I am no longer in constant pain, my joints don't hurt anymore, I am not nauseous all the time, I am regaining my energy-all a result of my new liver from one very special person-John.

Please keep John in your prayers as he is still in the hospital. It is so difficult for me to be so happy about going home, knowing he will still be here. I went to visit him tonight, and his spirits are great, as usual. He is currently drinking contrast and going for a test later on tonight to make sure that he is healing appropriately. I am eager to hear the news from his test; if they come out well, he can eat tomorrow!! This is something he is really looking forward to; he said he is craving cinnamon toast. Let's hope that John can have his toast; he really deserves it. I really hope that he gets to go home very, very soon and head back to school. He has been through sooooo much, it breaks my heart to think of all the pain and suffering he has been through for me-there are no words to tell him how I feel.

Thank you once again for keeping John and me and our families in your thoughts and prayers. We got through these past 2 1/2 weeks with the support from the ones we love.

That is all for now; good bye 7 west, room 722...I WON'T be missing you...

Monday, November 2, 2009

Some updates & a special visit

First off, many thanks to my wonderful Aunt Terri for cooking me dinner tonight. Hospital food gets old, fast, so having grilled chicken, rice, and corn (one of my favorite meals) was a nice treat. She also snuck in some cupcakes and cookies! She wouldn't be my Aunt Terri if there wasn't some baking in the mix :) I just love her.
Anyway, I had a special visit from John's family tonight. John, himself, was unable to join as he wasn't feeling up to a visit, but his dad, John Sr., Mom, Doreen, and sister, Kirstin, came over to visit. With them, they brough a gift, which was very generous and not needed, but nonetheless, extremely sweet. Doreen said the gift was something small, but upon being handle the gift, it was far from small. Having this heavy box in my hand, I began unwrapping, to find a "Thing's Remembered" box. It was then I knew this gift was something special. John and his family got me an engraved snowglobe that plays "Amazing Grace". I will forever cherish this gift and it was always stay near and dear to my heart. Thank you, thank you. I had such a nice visit with John's family, we just missed John. Hopefully he feels better soon and can join in on the fun. Kirstin and I walked down to the play room to get the game "Trouble" to bring back to John's room to play together. I hope they are getting family enjoyment out of that! I can't wait to get to know John and his family better, I know there will be plenty more visits to come. I'm really looking forward to girl time as Kirstin and Doreen are awesome and relate well to my mom and me and I know will love my sister as well.
So, to update about today: I woke up in a great mood and full of energy. I ate a pretty big breakfast, put REAL clothes on (I got out of those ugly johnny coats) and took a few laps around the halls. Once I was out of the room, I didn't really want to come back in. I am sick of being cooped up in this tiny room, I really want to go home. But it seems like the doctors like to find reasons to keep me here. The newest word is that I have to start a high protein, low fat diet. The doctors determined this when they sent some of the fluid coming from my abdomen and sent it for testing. I have chylous ascites in my abdomen, which means that I am losing fat when the fluid comes out of the incision; which is a result of the lymphatic system leaking. So the doctors idea is that if I eat high protein and low fat, that the lymph system will stop leaking and the fluid will slow significantly. This means that I have to eat things like egg whites, drink loads of milk, and lovely carnation instant breakfasts. Thats basically going to be my diet for the next few days...at least. Needless to say, this news brought down my spirts in a heartbeat. I swear, sometimes I just can't catch a break. All the doctors were telling me to eat soooo much, so I started to eat really well, and now they're taking all the foods away from me that I love. Hopefully this stupid diet works and fast, because I can already tell I'm going to have a hard time with it. Sorry for being a "debbie downer" but I was really enjoying eating again. If this diet does work, I think they will still have to put some stitches into the open parts of the incision just to ensure that it stays closed. Thats basically all for today, I'm going to finish watching "Because I Said So" with Mom (the mother in this movie IS her), then try and get some sleep. Wish me luck tomorrow, I'm really going to need it.


a message from Joe

So, as Joe was driving home last night at 10 p.m., he was dreading the thought of tackling our leave covered yard in the mornig as it would keep him from being up at the hospital with Alison. Then, as Joe pulled in the driveway in the dark, he thought, "something is missing". He realized, "the leaves", it was as if a big wind had come and blown all the leaves away. Unbelievable, not only have our family and friends cooked meals, taken care of our dogs and more, they are now taking care of our yard. The mystery remains, though, who is the mysterious leave blower-whoever you are, you are a life saver. Thank you, thank you , thank you!!!!

In gratitude,
Joe (and Karen, too!)

The start to a new week

8:00 a.m. Monday
Although Alison was woken every two hours for blood pressure checks, medications and fluid bag changes, she is up this morning with smiles and "energy". The transplant team was in and indicated that she is doing well-Alison wanted me to be sure to tell everyone that the doctors indicated that her liver functions are perfect-way to go John! The team will now report to Dr. Emre and he will be in to assess and develop a plan for moving forward. We asked about John and the doctors shared that he is also doing well this morning-what a great way to start the week-positive news on all fronts-hopefully we're starting a new trend. Perhaps the biggest decision in Alison's "court" right now is how to move forward with the fluid issue-we'll see what Dr. Emre says about that-we're sure he will come up with a good plan. Alison has her nurse, Melissa back today-that's a good thing-Melissa is young and personable-someone Alison can relate to. We learned that the nurses have created a team for Alison with a primary nurse, an associate and then other nurses who sign up to be on her team. This is an interesting design to providing consistent care for Alison-all of her nurses are wonderful, so we feel very lucky. We will try to post later today after we have been able to talk with Dr. Emre.
Have a great day,

Sunday, November 1, 2009

Sunday, Sunday........

After a nights sleep at home, mom was a bit refreshed this morning. Alison had a pretty sleepless night with two hour blood pressure checks and emptying of fluid bag. She was able to walk two circles around the unit and then sat up in the chair a bit. Mom went to visit John (Alison's donor) today. He looked fantastic-hopefully, the major challenges are behind him and he is now on the real road to recovery. His mom and dad then came up to visit with Alison-it really feels as if we have known all of them forever-we can't wait to meet John's sister and for them to meet Alison's brother and sister. That time will come when we are able to get both John and Alison home and healthy. Wow, Alison and healthy all in one sentence-that's amazing and so hopeful. We are eager to see Dr. Emre, as he is back tomorrow. We are very interested to hear his read on this fluid situation with Alison-we know that he has been consulted all weekend but to talk with him directly is always so much more comfortable for us. Well, we are off for another walk around the unit-have a nice night everyone.
Joe and Karen

Saturday, October 31, 2009

Happy Halloween

First off, Happy Halloween. I'm a little bummed I had so many complications and I couldn't be home to see all the kids in their costumes. My cousins were going to stop by just so I could see the little ones through the window in their costumes since I can't be around them, but I will just have to settle for pictures (which I better get emailed to me ASAP! hehe) But anyway, I decided to be a big girl and let my mommy go home for the night. She hasn't been home in 2 weeks and has helped me so much with everything, it's almost like she had the surgery. So she went home with dad for the night to sleep in her own bed and shower and just relax. She deserves to have that, and I want to do what is best for her. It is a little weird not having her here as a roommate, it's quiet, but I'm sure I'll be asleep soon and won't realize that I miss her. So today went pretty well, I guess. At the end of each day, I try to think back with what happened and each day just seems to blend into the previous. There is still a lot of swelling in my abdomen and legs which is annoying and uncomfortable. My insicion is leaking a lot of fluid and we kept covering it with gauze and things but it leaked through so fast, faster than normal. Also, the color seemed to change to a more red color so the hematologist (blood doctor) talked with my liver team and decided to stop the blood thinner for today. Since doing that, the fluid is less red and the blood thinner will probably be started tomorrow at a lower dose so that does not happen again. My mom made sure that someone called and spoke directly to my surgeon, Dr. Emre today since he is in Boston at a conference to let him know everything going on. He came up with the idea of putting a bag with a sticky top around the leaking part of the incision to catch the fluid instead of just saturating gauze every half hour, which seems to be working. Keep your fingers crossed please! Also, the doctors have been giving me albumin through my IV which is meant to draw the fluid that is all in my abdomen and legs back into my blood vessels. This is where we want the fluid to go or else it won't leave my body. After I am given albumin, I am then given lasix (the made that dosage higher too) so that helps to get the fluid out of my body. Hopefully this system works and I can finally get some relief from this fluid. I did really well with walking today. I did two consecutive laps, twice today which is the farthest I have ever walked at one time. I did okay with eating and drinking, it is just so hard when you feel full. I drink a lot capri sun which my dad thankfully keeps buying me. Water has just gotten so boring to drink and the juice tastes better and makes me want to drink it so I stay hydrated. Dad taped up all the cards on my wall today that I have gotten over the past two weeks; boy am I loved! you would think I have been in the hospital for 2 months, not 2 weeks! There has to be at least 60 cards on my wall, its awesome to look at! Thank you everyone for sending cards, gifts, thoughts and prayers, it is really appreciated and I love everything. I didn't read the post my mom wrote but if this is already written, its just so cool that I don't mind repeating it; Marla, from ALF, wrote a letter to the cast of House telling them I was a huge fan and about me and everything that I am going/have gone through and they sent me a framed, personalized, autographed picture just from house and a separate autographed picture of the whole cast! HOW COOL IS THAT?!?! It's one of my favorite shows and I am sooo excited to have gotten them, such a gift! Thanks again to Marla! I also want to again thank Aunt Sandi, Melissa, and The Jordan family for taking care of my doggies. Since both my parents spend every day, all day up at the hospital with me, it makes us all feel better knowing that they are taken care of and loved. Closing off this blog, I just want to thank everyone for continuing to keep my donor in your throughts and prayers. He and I have definitely had our share of issues since the surgery, but we are both fighters and trying to keep positive spirits through this whole thing. Knowing we have so much support is helpful and he is like a part of my family now, so I appreciate everyone treating him as that. I sent him a little Halloween goodie bag today and yesterday just for fun. He is in the adult section of the hospital which I refuse to be in because I just have more fun in pediatrics so he deserves some fun puzzles and games to keep him entertained, plus he deserves it. I also colored him a picture of a mummy since mummies are all bandaged up and so is he; I thought it was fitting. And of course, I colored out of a coloring book with crayons because I still act like I'm 7. (haha) I wish everyone could meet him; he is such a great kid. He is so nice and sweet and just an overall genuine person. His family is fantastic, too. He told me to stop thanking him for giving me the gift of life, but how can I? He gave me my life back and gave me back to my family. Now I have two birthdays to celebrate, my mom said. My real birthday, and October 19th, the day I got my life back. Well it's late now and I should try and get some sleep. Happy Halloween to all and to all a good night.

Love, Alison

Friday, October 30, 2009

The start of a new day

Alison said this morning that last night went better than most, of course she kept us on our toes with her oxygen saturation levels lowering as she continued to fall into deeper levels of sleep throughout the night-she finally got a fairly good night's sleep though for the first time since we've been at the hospital. Alison remains on heparin, a blood thinner, for treatment of the blood clots. The dosage of this medication has had to be carefully watched and altered to maximize the therapeutic effect and get her the best result. She continues to deal with uncomfortable swelling and intermittent pain. Her incision sight has started to show signs of slight itching which is normal as the wound starts to heal. Alison is very proud of the fact that she removed almost all of the steri-strips from her incision (only possible because she is still numb over the incision, they most likely wouldn't have come off otherwise due to how sticky they were)-I guess the nursing skills are kicking in.

I visited with Alison's donor and his dad for a short time last night. Although we do not want to be intrusive, we just couldn't resist checking on him as we have been so worried. He is recuperating from his last surgery, one that after being discharged late Wednesday, brought him back by ambulance before he even reached home- from what we understand, this is his third major surgery in just 10 days-we are so, so sorry for all he has been through. I was just astonished at his positive attitude. With all he has endured, his concerns remain for Alison-he seems to see all of the complications he has suffered as "something" that just comes with the situation-he told me, "It's all worth it". I know he is an adult-actually well beyond his years, but the simple thought, "he is just an amazing kid" keeps ringing through my head.

Joe and I are so very grateful to his parents, we know the challenges of having your child in the hospital all too well and its effects on work and home; not to mention the unexpected costs, lack of sleep, emotional turmoil and just overall, disarray it brings to a family's life. We want them to know how very much we appreciate what their son has done but to know how deep our gratitude is to them as well.

It's early in the day but it is encouraging to see Alison feeling a bit better today and with positive thoughts. I think sharing with her how positive her donor is, is a true inspiration to her. He not only has given her a physical gift that hss saved her life but also shares his emotional strength for today and the days ahead.

Here's to a good day for Alison and her donor.

With hope and love,