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,

Thursday, October 29, 2009

4:10 p.m.-Thursday

Alison had the filter put in this morning-it involved another procedure for her to endure but we're so grateful that something could be done to keep the blood clots out of Alison's lungs. She is recuperating from the procedure, feeling tired. Let's hope that this is the last "glitch" and Alison can begin to strengthen herself for recovery.

We understand that Alison's donor also had a complication yesterday. We also understand that he is now recovering-we are so worried about him and his parents and want them to know that we are here for them. To the donor family-we want to share our cell phone number, it is 203-610-4338. Please call if you would like to have a cup of coffee together. We would really like to know how your son is doing but, again, respect your wishes.

In gratitude,
Joe and Karen

Trying to see the good news

So, "the good news" is that Alison did not move to ICU last night, her vital signs remained stable and since 7West is so close to ICU, the doctors felt that it was fine to keep her in her room. Dr. Emre came in this morning and told us that it was decided that Alison should have a filter put in to prohibit any further blood clots from moving into the lungs. ""The good news" is that there is a procedure to help the current situation. At the moment, Alison is resting comfortably-"the good news" is that the intense pain has subsided for now.

At this point, it would be very easy to focus on the negatives but that will not change what has happened and what will happen-we have to stay strong and continue to have faith in Alison's doctors and focus on "the good news". The most important "good news" is that Alison's liver is functioning wonderfully-no....that is "amazing news". With God by our side, we have faith that we will continue to have "amazing news" as we try to move forward.

We are so grateful to all of you for your prayers-the fact that we are surrounded by so many is also "the good news".

Joe and Karen

A need for prayers to continue

It is now 3:30 a.m. on Thursday morning. Unfortunately, Alison began to experience chest pain last night. After an ultrasound and a CT Scan, it was determined that Alison has another pleural effusion and a pulmonary embolism in the lower left lobe of her lung. The embolism is small. The docotrs are changing her blood thinnner medication and for precautionary measures, moving her back to the Intensive Care Unit. All of Alison's vital signs are good but she is in a significant amount of pain. The teams of doctors will meet this morning to discuss further plans.
Joe and Karen

A very special day

On Wednesday at 6 p.m.

When we woke up this morning, it seemed like it would be another day of challenges to face. Alison had terrible stomach pain-hence, she could not eat or walk-it looked as if the "rollercoaster" had taken another dip. But the afternoon started to look brighter and then "the call" came, Alison's donor wanted to meet her-a brighter afternoon had now turned into a dream come true. As we anxiously awaited the meeting; Joe and I quietly sat with Alison. I think we were all at a loss for words-what do you possibly say to the young man who saved your daughter's life? And then, there he was being wheeled into the room with his parents by his side. This beautiful human being, who gave our daughter her life back and changed our family forever-was right here before us. As I looked at this young man and he at me, I felt a connection that is indescribable-very little words were needed-I knew that he could humbly see our gratitude and love. It was as if, through his eyes, he was telling me that this was what he was meant to do, that all would be "OK". Our meeting was brief, like those moments when you see your child for the very first time. We were elated, overwhelmed, grateful and filled with love for this person whom we had just met. As we talked with his parents, it was so easy to see why this young man, is the special person that he is. We hope that we will see him, see them again-there is so much more to share, so more much to say, but we want him to know that what is most important is what he wants for we have the utmost respect for his wishes.
With much love and admiration,
Karen and Joe and Alison

Tuesday, October 27, 2009

3:50 p.m. Tuesday
OK, so now we have a new plan. The vascular and transplant teams have now decided to hold off on any medical procedures. They feel that it is safest to leave the blood clots as is and to just treat with the blood thinner. All are benefit vs. risk senarios-the hope is that the body will begin to absorb the blood clots and in the meantime, hope that the blood clots do not travel. We have to work hard at getting Alison to eat proteins and drink fluids-the challenge is the nausea-but the doctor has now discontinued one of the medications and came up with a new regimen for anti-nausea medication-hopefully we are on the right track.
Further updates to come.
Karen and Joe
Tuesday, 8:45 a.m.

The transplant team came in this morning and it appears that Alison will be having the thrombolysis. We still do not know what time but the doctors say that it is important as they need to be able to get "access", meaning that they need to be able to have a mechanism to give her medications. The blood clots are prohibiting their ability to do that. Alison is also having what they call, "third spacing" where fluid is accumulating outside the vascular system. It is important that they give her a medication called albumin to help pull the fluid back into the tissues. As you can all imagine, this is all very frightening and disappointing as we thought Alison would be going home today. Alison's liver is doing fine, we are so grateful for that. Please continue to pray that she is able to get over these new "hurdles".

We have not heard anything further about Alison's donor. As of a couple of days ago , we understood that he may be going home today. We certainly hope that that is the case and that he is well on the road to recovery.

Joe and Karen


4:15 a.m. Tuesday

Doctor came in to say that the vascular and transplant teams are discussing a procedure called Thrombolysis. This procedure entails inserting a catheter with medications to break up blood clots. In a couple of hours, we should find out whether this is a definite and what time she will be put on the schedule. Will post when we have more information.
Joe and Karen

Monday, October 26, 2009

More blood clots

Monday, 9:30 p.m.

So we now had an ultrasound of Alison's left arm this evening and just got the results. She has two blood clots on the left side. This along with the expanded blood clots on the right side that were discovered last Saturday are very concerning. The transplant team is consulting with the the vascular team to see what the plan will be. We can either start a new blood thinner which is a challenge as we cannot get an IV in her veins so they may need to put a pic line in or they may want to put a filter in. They just hooked Alison back up to the monitors to watch her closely. We are on pins and needles waiting for the teams to make some decisions. This along with other issues today, has been pretty overwhelming. Please continue to keep praying as we are not "out of the woods" yet.
Joe and Karen

Trying to keep on "plugging" along

7:45 p.m. Monday

So, another long day for Alison. This has been a difficult day, lots of medical "stuff"-PT, OT, nurtional consult, vascular consult, pharmacist consult, ultrasounds and procedures-and lot of emotions. Hopefully, tomorrow will be better.

Little Ryan, the ten year old we told you about, came up from OR about an hour or so ago. All looks stable, so overwhelming for his parents. Please keep them all in your prayers.

Joe and Karen

Monday morning update

The ultrasound was done around 12:00 a.m.-results around 2:30 indicated that no additional blood clots have formed but the blood clots that are there have expanded. The transplant doctors came in this morning around 9:30 a.m., they seem optomistic but indicated that they are looking to the vascular specialists who will be in today. They did start her on the blood thinner again, feeling that since the internal bleeding has stopped, it would be safe-it's definitely a balancing act. We would like to get Alison eating, up walking and perhaps showered today but the medications are making her nauseous-hopefully when the pharmacist and nutritionist come in, they will be able to give us some tips. The transplant team seems to feel that Alison still may be able to be discharged tomorrow unless the vascular specialist indicate otherwise. Will update when we know more.
Karen and Joe

P.S. We have met another family here who is from Rhode Island. Their 10 year old son, who was healthy 2 weeks ago is in acute liver failure. They just took him down for a transplant about an hour ago. As you can imagine, this family is totally overwhelmed and frightened. If our day goes well and Alison can be left for a bit, Joe and I will try to go down to the waiting room to support Ryan's parents, Pat and Connie-they did have some family here yesterday but it appears that they are here alone today. As we know that we have great "prayers" out there-we ask that you also pray for Ryan and his family.

Sunday, October 25, 2009

Sunday evening

9:20 p.m.

OK, so the evening has turned out to be no better than the afternoon. Alison's right arm has become red and warm and the veins are very prominent. This is concerning as this is the arm that has the two bloodclots. The doctors are having the on-call ultrasound staff come in from home to do an ultrasound of her arm to see what is happening with the bloodclots. The other problem is that the IV in her left arm is not working and the nurses have been unable to get another IV in. The process of trying to find another IV spot, is pretty painful. All in all it's been a pretty challenging day. Biggest worry at this point is the right arm. Can't wait to get the ultrasound done-will try to post when we have more information.
Karen and Joe

Tough afternoon

Alison is doing "OK" but having a frustrating afternoon. It's just one of those days- just too many nursing changes, interventions, glitches and such. Some days are just harder than others to see that beyond all of the challenges of the present there is now (thanks to her donor) a bright future which lies ahead. Hopefully, the evening will be a bit easier.
Joe and Karen

Hi everyone

2:25 p.m.

The morning has just flown by. Alison started the day with a little bit of breakfast. She is hungry but finding it a challenge to eat. The doctor said that this is normal and will take time. The doctor removed the last drain-yeah!!! It was pretty painful, but Alison got through it. Hopefully, this will be the last of "procedures" for a long time. Alison has been up in a chair for a while, she is very tired and apologizes for falling asleep. Her left arm has now gotten swollen, the nurse thinks that this is due to her IV no longer working, hopefully that is it and they can find another site. Discussions surrounding discharge have begun-maybe in the next couple of days-just amazing! We asked Dr. Emre how the donor was doing and he said that he is doing well and may be discharged in the next couple days, too! With the bits of information we have received, it almost seems as if his recovery is going "hand in hand" with Alison's-we certainly hoped that his recovery would have been easier but are so happy that he, too, will be discharged soon.
Love to all,
Joe and Karen

Saturday, October 24, 2009

A note from Alison

Where do I It actually happened. I have a new liver in me and am alive and doing pretty fantastic. I can hardly believe it, it all seems like a dream to me. And, my liver functions seem to be doing so well! We anticipated more issues because the doctors said that not every transplant is perfect, but come on, have you met me? I AM perfect. (Haha, just kidding). All I keep thinking is that I am so thankful that God brought the donor into my life and I was given the most gernerous and amazing gift of all time; a second chance at life. For a while there, I was extremely keen on giving up because feeling the way I did with all the symptoms that I had was just getting to a point where I honestly just didn't want to live anymore. But with the support of my great friends and amazing family I got through it, and thank God I did. I just hope that my donor is doing as well, if not better than I am feeling. I can't say that things are perfect, but I am even suprising myself with how good I feel. I guess when you go from a point of being so sick, having a such a major surgery like I did, recovering from this almost seems a lot easier (weird...huh?) My donor is constantly in my mind and I just want him to be doing well. Hopefully he finds everyone's prayers comforting to him as we all keep him in our hearts and prayers each and every day.
So...a lot happened today, pretty sweet in my book. Of course, I got woken up at what seemed like the crack of dawn (anything before 1pm to me seems early nowadays) by the doctors who were talking about the future plans. I know my mom posted some things when she wrote on here earlier, but I figure I would updated you all on my own. So since the drain in my side is still draining a good amount, they aren't going to take it out until tomorrow. Also, I know my mom mentioned that I had some bleeding in my intestines, which seems to be slowing down. My blood counts are looking better day to day, so that is great. It is kind of strange how the area over my incision for the most part has no feeling. I can't say I am pain free, 'cause I am not, but right over where they cut is somewhat numb.
Aside from all of that business, I got moved out of the ICU today! It is my first of little "graduations". I also got to eat some substantial food today instead of just jello and nasty chicken broth! I had a little bit of a chicken quesadilla and some cheerios. I am trying to take things slow, I don't want to go overboard just yet. So those two things are pretty awesome, and I can't believe that it has been only about 5 days since I had my surgery and I am able to eat and stuff. I am doing my best to walk around and stay ambulated but it's hard because of how incredibly swollen my legs and lower abdomen are. The doctors say this is completely normal and within a few weeks it should all go down, but oh my gosh, I just can't describe to you how uncomfortable being this swollen is. I feel like I am walking on two tree trunks; it is a very abnormal feeling for me.
Just as I am feeling now, I get tired really quickly. I will be in the middle of doing things and my eyes will just feel very heavy and I feel like I can fall right asleep, and usually do. This is why it is best if people call someone's (mine, my mom's or my dad's) cell phone before you want to come visit so we can judge how tired not only myself but my family is too. I know my mom is exhausted because she is pretty much living this surgery with me as she hasn't even been home once yet. Dad does go home but he is here sooo much too, he only goes home to sleep and make sure the dogs are taken care of (a special thanks to our dog sitters- Melissa, Mrs. Jordan, and Aunt Sandi). Really, my family has just been great. I would not be doing as well as I am without how much they have helped me not only throughtout my life, but right now and recovering. Let me just say that you would be shocked at some of the things your family will do for you in situations like this (my mom knows exactly what I mean.)
Okay, well that is how I am doing at this point in time. I am getting very tired, so I think I'll go take a nap now. It's a challenge to type on this thing, but I'll try more because I know you all want to stay updated. My mom has been doing a phenomenal job at keeping you all updated with how I am doing, so that takes a weight off of my shoulders. Okay, nap time; maybe you will hear from me later if I feel like typing a novel again (haha). I love you all and thank you very much for your continuing thoughts and prayers and keeping myself, my donor, and my family in your hearts. Having such a supportive group of people around means more to us than you could ever imagine.

~Alison <3

PS-Happy Birthday to Grandma Lindwall (I know that she is up in Heaven watching over me right now and keeping me safe)

GOOD Morning!!!

Saturday, 11:00 a.m.

Good reports all the way around this morning. Lab work is indicating that the internal bleeding has stopped. We are so relieved. Liver function tests are looking really good-her new liver gets an A+-we're sure her donor would be very proud. We are elated!!! Alison took a walk all the way around the unit today. Her main challenge is the swelling in her legs and abdomen. Doctors say that this is to be expected but is very uncomfortable none the less. Alison hopes to have her diet advanced today-she's banking on solids but we'll see. She will have the second drain removed lster today-this is pretty uncomfortable, so please pray for her strength to endure. We're hoping that she may be moved out of ICU-we're waiting for Dr. Emrea to give the word. Although the doctors will continue to monitor Alison closely, she is certainly improving-just amazing.
Have a good day, we will try to post this afternoon.
Joe and Karen

Friday, October 23, 2009

Rollrcoaster of a day

Friday 11:00 p.m.

Sorry for such a late posting but the day has been very busy. The morning was pretty intense as the doctors continued to review the concerns with Alison's internal bleeding and her existing blood clots. They explained that their main concern was the bleeding and would have to stop the blood thinners that are needed for the clotting. They felt that, although the blood clots need close monitoring, the loss of blood was more of a priority. By mid-afternoon concerns were lightened a bit. Dr. Emre arrived and explained that he was confident in his diagnosis of where the bleeding was coming from. It is related to a particular area of the reconstructive surgery and felt that it should repair/heal itself in time. He and his transplant team will continue to watch her very closely but felt that her blood levels were starting to stabilize. This was very comforting news. Fluid retention continued to be very uncomfortable for Alison, however, Dr. Emre said that this is expected and will take time. Alison did walk for the first time today-it was so great to see her up. Late afternoon was stressful for Alison in that she had one drain and the central line in her neck removed-this was all pretty painful but she was strong and made it through. These are all steps in the right direction but stressful none the less. Dr. Emre allowed Alison to start on clear liquids today-yeah. If her condition remains stable, she may leave ICU tomorrow-yeah!! Needless to say, today was certainly "a rollercoaster ride" but we are cetainly trying to focus on her progress and achievements.

As each moment of each day passes, Alison's donor is on our minds and in our hearts. Dr. Emre shared that he was doing better today-we are so relieved as we have been so worried about him. Alhough his identity still remains a mystery, there is a part of us that feels as if we know him. You see, we prayed to God for so long to send him to us and as we watch our daughter peacefully sleep tonight, we pray that somehow he can feel our gratitude and love. We also pray for his mom and dad. We wish there was some way that we could relieve their stress-they must be so very proud of their amazing son.

Wishes to all for a restful night,
Joe and Karen

Thursday, October 22, 2009

A challenging day

5:05 p.m. Thursday
So today was a challenging one. Alison was very tired this morning but she did get up and sit in her chair. She received 3 units of blood as there is some internal bleeding going on. The doctors are pretty sure that the source is from a particular area where the new liver was attached. They are cetainly watching this closely but said that this can sometimes happens and often it will repair itself-let's pray that this will be the case. Her legs are quite swollen again today, so the doctors ordered another ultrasound just to make sure that there are no further blood clots-her arm actually looked great this morning. Dressing changes on her incision and central line were very uncomfortable but she made it through with a little help from mom and her big sister. Poor dad keeps getting "kicked out" of the room-but Alison always wants him to be close by. Like we said, a challenging day but she is now resting very peacefully. We have only received very general information on the status of the donor but it seems as if he is having his own challenges. So please continue to pray for him as well as Alison.
Joe and Karen

If you have received the FluMist Vaccine.....

Please not this important information that my niece Amie shared with me:

"It has been documented that the live viruses from the live vaccine can be shed (and potentially spread into the community)from children for up to 21 days, [8] and even longer from adults."

With this information, it is clear that if anyone has received the FluMist (that's the flu vaccine that is administered through the nostril), they should not visit Alison anytime in the near future.

We knosw that the more we can educate ourselves about the risk factors that can effect Alison's suppressed immune system, the stronger our tools of defense can be.

Many thanks, Amie, for this crtical information.

I will update shortly as to the happenings of the day.


Wednesday, October 21, 2009

Wow, what a day!

11:41 p.m.
Alison had an amazing day. She got up and sat in a chair for a good three hours. It was actually too long as her legs were pretty swollen afterward but, overall, she did great. Getting her in and out of bed is a challenge but she has been so strong and determined-she already has a system and the nurses have learned that it's best to follow her lead-what a surprise, huh? She did her breathing exercises,too, today-what a good patient. Doctors are continuing to monitor her liver enzymes closely, she did need a transfusion today and blood clots are still keeping everyone on their toes but IV lines started coming out today-it is truly amazing what has transpired in such a short time. She is eager to get out of ICU and back to acting and feeling like her normal self. She actually told us that the intense joint pain and overall body pain has disappeared. We think, though, that she is almost too afraid to count on the possibility that she can actually be healthy again-it all must feel so surreal. Alison had many visitors today-she was excited to see them but was pretty tired by the end of the day. Not much more news on her donor-all the nurses will tell us is that he is doing "OK". We continue to pray that his pain is subsiding.
Love to all,
Karen and Joe

Wednesday morning update

10:40 a.m.
Alison had an "OK" night. Moving her every two hours is difficult for her-but she is really trying hard. The morning thus far has been tiring for her with changing her dressing again (ouch!!) and repositioning her again. The doctors are giving her a rest right now and will then attempt to get her up in a chair for the first time-we'll let you know how that goes. Aunt Terri and Aunt Kathie attended the healing mass at Christ the King this morning-thanks you guys. Many thanks to my co-worker, Stacey for having this mass said for Alison. Ultrasound was done, once again this morning and the new liver appears to be functioning well-just amazing!! We have not heard anything new about the donor, perhaps we will get an update when the transplant team rounds at 1 p.m. Joe and Stephen should be coming up soon. Jen is off to work today-I guess someone has to pay the bills(haha).
Love to all,

Tuesday, October 20, 2009

Sorry it took so long to give an update

9:30 p.m.

Although we have a long way to go, Alison has come so far on just this first day. She has been very alert and although every movement takes a concentrated effort, we have been able to get her to sit up in bed-she was even talking to her friends over the internet tonight. The pain is pretty intense but she is really trying to do her breathing exercises. Stephen has been a really good coach with that-providing the empathy of someone who "has been there". She also enjoyed Jen's visit-amazing what visits from her big brother and sister can do. Visits from other family members, were also wonderful, not only for Alison but for mom and dad, too. The transplant team came in twice today. Doctor Emre seems happy with the way things are going thus far. The plan is to get Alison up and out of bed tomorrow. Pray that this can happen with as little pain as possible and that the night will be quiet and uneventful. From what we know, Alison's donor is doing well. He continues to have pain also, so please continue to pray for him as well.

P.S. So the news is out!! Basement flooded, fireman at the house..........and we thought all the excitement was happening up at Yale yesterday. Many, many thanks to Sandi and those family members who rescued our basement from "the flood". What we would do without you all? Seriously, As if a "little" water could throw us after these past few years---well, on second thought...., without our amazing support system-it might have!!! Many, many thanks!
Much love to all,
Joe and Karen

Alison is off the ventilator

When Alison was brought up to ICU, she was in a lot of pain. She was communicating with us though, trying to write us notes. She came off the ventilator at about 2:30 this morning, which the doctors were very pleased about. One of the first things she said was, "How is he"-meaning her donor. We assured her that he is doing well although in a lot of pain as well. Joe and I both spent the night. Alison's pain continues but we will really have to push her today-it's seems like it's so soon but the doctors say that her breathing and moving her legs are so important.

Monday, October 19, 2009

The Worst is Over but we have a critical week ahead of us.

Dr. Emre came in to give us his final update of the night. He attached the bile ducts and they are working on closing her up. Dr. Emre gave is the impression that though the worst part is over but the most critical time is ahead of us. The next week will tell us what, if any, problems there may be with any complications with the transplantation. We will see Alison in the morning.
Thank you so much to the donor for his selfless life saving act. I can't wait to have my little sister back. Alison even acknowledged that she will be a terror this next 10 to 14 days but it's glad to have all of her back in our lives again.
I hope that the donor and his family knows that they are in our prayers and that they know I know almost exactly what he's going through and that I will him all my strength to get better as fast as possible.
Thank you to all of the prayers, thoughts, and messages for well wishes and a big thank you to all the friends and family who came to the hospital in support of Alison.
We're waiting now for Alison to come to the ICU. Mom and Dad will be staying the night and Jen and I will be going home to take care of the dogs and reenergize for tomorrow.
Thank you all again.

alison's surgeon still hard at work

Dr. Emre is still working to connect Alison's bile ducts. Her donor is in a lot of pain but doing well. The nurses showed us pictures of Alison's liver-they are truly a testment to how very sick she was. We are anxiously awaiting the completion of her surgery and will post when we have more news.
Joe and Karen

Half way there

Donor's surgery is complete and he is going to the ICU. Surgeon is now working on attaching the new liver to Alison. We're half way there for Alison. More hours to go and more prayers to pray.

The start of a new day

Alison has had a busy and emotional morning. Her friends came up to visit, bearing much love, special gifts,smiles and tears. Stephen and Jen and Auntie Dawn are here. More doctors consulting, heprin has been stopped to prepare for surgery. The transplant nurses came up and indicated that the donor is in surgery and has had his gall bladder removed. All is going well, now it's time to just wait,they estimate that Alison will go down around 10:30. Alison is quite anxious but is exhausted and drifting in and out of sleep. We continue to pray for the donor and for Alison.
Karen and Joe

Healing Mass today at noon

A Healing Mass is being said for Alison today at noon in the Sacred Heart Chapel.

Alison is in surgery

After a long morning, Alison finally went down to surgery. She had very little time in the holding area and went in to the operating room at 11:09. Joe and I arrived to the waiting room to many of Alison's friends and our family-God has truly blessed us.
Joe and Karen

Sunday, October 18, 2009

It's been quite a day

The challenges just keep coming. We found out today that all the swelling that Alison has had these past few days was not only due to fluid accumulation but she now has two blood clots. After much consultation from several specialists, it was decided that an ongoing infusion of a blood thinner was appropriate and that the transplant would remain scheduled for the morning. It has been a very, very difficult day for Alison-her worst day ever, she said. Father Gerry came to visit and administered the Sacrament of Healing-we know that God is with us and continuing to give all of her doctors the skills and knowledge to make the right decisions and keep her safe. Although there will be ongoing labs to do throughout the night, hopefully she will be able to get some sleep. If not, hopefully her mom can bring her some comfort.
Until morning,
Joe and Karen

A bump in the road

Alison had 2,000 cc's of fluid tapped from around her lungs yesterday. There was more but the doctors can only tap so much at one time. Alison definitely felt some relief but still has pain and discomfort. We're hoping they can tap the rest tomorrow when she goes in for surgery. Stephen is home from Fordham, he and Jen came up to visit with Alison last night. It was wonderful for Joe and I to have all our children together. Late night and early morning were filled with many tasks but, unfortunately, the is standard for a hospital stay. Joe was able to locate a roll-away bed for me-thank goodness-my hero! Alison is exhausted this morning-hopefully, she'll be able to get some rest.

Saturday, October 17, 2009

Hospital admission earlier than expected

So as if to let us know who is boss, this liver disease has brought us to the hospital earlier than expected. Our plans for a family dinner and pumpkin carving tonight will have to be put on hold as we are in the emergency room with a pleural effusion (fluid around the lungs), nausea, and shortness of breath. Alison became ill last night but was able to hold off until this morning. We are now waiting for a time for her to get the fluid tapped. This usually brings about a great deal of relief-so, it can't come soon enough. It looks like she will then be admitted. We'll keep you all updated.
Joe and Karen

Thursday, October 15, 2009

Our prayers have been answered

It is so hard to believe that it has been six months since we last posted. The spring and, most especially, the summer are just a blur. So much has happened as Alison has continued to fight her illness; endless hospitalizations, medical procedures, pain and suffering. As much as we don't like to dwell on the negatives, they are the harsh realities of what Alison has lived with day in a day out. The positives, though have also been many. Stephen has recuperated from surgery and is back at Fordham-we are so very grateful for his return to health. He continues to be there for his sister, being the best big brother. Nine additional family members, friends and strangers came forward to be potential donors. Our gratitude to each and every one of them cannot be expressed in words-they are very special people who we feel honored and blessed to have in our lives. We were also blessed to have hundreds of people support Ali's Angels in our quest to raise funds for the research of Primary Sclerosing Cholangitis. Our thanks too to the many, many people who have remained constant in our lives through their calls, emails, cards and ongoing prayers of hope and strength for Alison and our family.

Well, all of our prayers have finally been answered. We are overjoyed to formally announce that a donor has been found. Alison’s transplant is scheduled for Monday, October 19th. There are no words to express the depth of our thanks to the young man who has come forward to save our daughter’s life. He has requested to remain anonymous, which we, of course, respect. We hope, somehow, though that he is able to know how his unselfish gift will reach far beyond the one person he is so committed to help. He will be giving our family back the joy of our lives, the spark that makes us complete; we could ask for no greater gift. His gift will also enable Alison to fulfill her dream to become a nurse; nurturing, caring and comforting many who will face the kind of sickness and pain that she has. Alison has struggled and suffered so much and to think of her being restored to health and beginning to live her life again, is so incredible. This young man is certainly one Ali’s Angel that will forever remain in our hearts.
With love and gratitude,
Joe, Karen, Jennifer and Stephen