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,