Tuesday, March 28, 2006

No worries

Hey guys, sorry for the lack of updates. Everything is fine here. All the girls are great, doing well and healthy and growing. In fact, next week Alexandria turns 1 year old!!!!

My computer crashed, and that's why I haven't updated in a while. It's done, and we don't have the money for a new one right now. I am a little lost without my computer. The little things like e-mail, mapquest, and online banking. But especially my buddies over at Liver families and my favorites blogs to visit. Hope all is well with every one out there!

Monday, March 13, 2006

Monday Memories: Our Recovery



Monday Memories: Did I ever tell you about My recovery after the living donor surgery, and Anna's recovery after her transplant


I was dazed for the first two days after my surgery. The first thing I remember after waking up was how much pain I was in. I vaguely remember waking up in recovery, and seeing Jason. I don't think I really knew what was going on, or if I asked about Anna at all. The first time I really woke up, and was aware of what was going on I felt the worst pain I have ever felt in my entire life. Maybe even if you put together all the pain I have ever had my entire life all together it might add up to what I felt. Maybe not. It's hard to explain. Anyway, I was being wheeled up to my room from the recovery room I believe. I woke up moaning and groaning, and was heaving. I didn't have anything to throw up, but if I did it would have all come up then. Can you imagine? Do you know how many abdominal muscles you use when you throw up? It was terrible, I thought my incision was going to bust! So, then I hear someone say "maybe we need to turn on the epidural" Well, yeah! What are they waiting for? I thought they were going to turn it on before I woke up, so that I didn't feel this intense pain! The rest of the day of, was a blur. I remember getting a phone call from Jason, telling me that Anna's surgery was over and she was doing well! He came to me after seeing Anna in recovery. He looked so relieved, and tired. How hard that must have been on him to have the both of us in surgery, and waiting all that time. He called me his hero.

The second day I was there, they made me get out of bed. I was so angry with them. How on earth did they expect me to get out of bed after such an operation? They pulled my epidural early that morning so that I could walk. I had to walk the halls for a little while. The first time took me forever to just stand up. There was a lot of crying involved. [Let me just say that I never, ever, regretted doing this, even in so much pain, but it doesn't change the fact that I was in a whole lot of pain.] I felt ok enough to talk on the phone, although a little loopy, I could carry on a conversation I called Anna's nurses a lot, and talked to her doctors. That afternoon Jason came to see me. He had spent all that time with Anna (as it should be). He let me in on a little good news, Anna was already extabated not even a full 24 hours after her transplant! She was doing very well, no complications, but was resting and on some strong pain medications. Jason stayed with me for a while, but I was in and out of it. I didn't like what pain medication they had me on, I didn't like feeling so out of it, but didn't like being in pain either.

Jason went to the cafeteria that evening, and brought back up a visitor that he ran into there. Her name was Becky Wilczak. I knew her from high school, a friend of a friend. Hadn't talked to her since high school. She had been in the 2002 winter Olympics, and I remember being in the PICU with Anna, watching about her and her dad on the news. About how her dad needed a liver transplant, but snook to Italy to see Becky in the Olympics, when he was supposed to be at home awaiting his new liver. I knew that she luged, but was still shocked to see that she was in the Olympics. When Jason came in the room with her, I was surprised, to say the least. Jason only had met her one time, but recognized her from watching the news. I guess her dad had received his transplant earlier that week. She didn't even know that I had kids, and it just blew her mind, the reason I was there. I was still in a daze, probably made no sense to her whatsoever, but I'm sure she understood. That was really cool.

Anyway, on the third day I was sick of it all. No more fancy pain meds for me. I decided on taking only an over the counter pain medication, just because I hated feeling out of it, slipping in and out, and not knowing exactly what was going on around me. Although, that meant being in a little more pain. That day, they wanted to kick me out of the hospital. Maybe because I was not taking the pain medications, and they thought I was doing well? I'm not sure why, but I was not ready to go. I had some asshole "doctor" trying to tell me that I didn't care to see my daughter when I told him them that I didn't feel ready to leave yet. When he left, and said they were going to write up my discharge papers, I called Jason right away, and he could tell that I was obviously upset. They actually made me feel guilty! I thought maybe it was because of the insurance, or maybe he was just being an asshole. This made Jason really mad! He made some phone calls to Northwestern when we got off the phone. I didn't know he was doing this until after a social worker came in and told me that I could stay for as long as I needed to, and apologized for the way I had been treated. Jason told me later that, to hear me that upset, that someone made me feel the way they did, made him angry. I am not sure who he talked to but this is what he told me he told them. "This person made my wife cry, and that is not acceptable. She just gave part of her liver for her very sick daughter. Nobody made her do it, of course she cares about her. For you to make her feel low right now, when she is in obvious pain, is unacceptable. Plus, she has been on an emotional roller coaster for five months, what do you think this does to her state of mind right now." I know there were more words, that is just a glimpse that Jason has told me. After that though, I didn't want to stay any longer anyway. I left early the next morning, and went straight to see Anna.

When I first walked into the PICU, I got a very warm welcome fro the staff. I walked over to see Anna. I could not believe how good she looked! She was smiling, she was peach, she was beautiful!! I couldn't believe her color, she had been yellow for her whole life. She still had a tinge of yellow, but still a drastic difference. She looked happy to see me, and hear my voice. I hated that I had not been there with her this whole time, but I obviously couldn't be. She had Daddy, Grama and Papa, and always her loving nurses. Always someone by her side. She had been in good hands. Before we left to go home later that night, we got word that Anna was being transferred to the 6th floor. Already! I wanted so bad to stay with her that night, but it was too hard. I couldn't lift her at all, or even do things for myself. They told me to go and get rest. They told me all the time to not overdue it, but I didn't listen all that well. I had already stayed that first day longer than I probably should have, I stayed until I couldn't move anymore. Walking up two flights of stairs when I got to Jason's mom's house was horrible. You never know how many abdominal muscles you use until they are cut into. I think we used all the pillows in the entire house to make me comfortable, or as comfortable as I could could get.

We went the next day to visit Anna again, and this time I stayed the whole day. It was a bit easier with her being on the floor, and I could finally hold her again. I was amazed at how well she seemed to feel. She would cry if she was moved the wrong way, but when she was still, she was fine. She was eating good, her color was even better than the night before, and she was all smiles. You could tell she felt much better. It felt good that I contributed to that.

On the eighth day it was Anna's half birthday, 6 months old! Since I didn't listen when they told me to take it easy, a part of my incision broke open and got infected. I had gone to Northwestern to have my drain pulled, and my incision cleaned out a couple day before this. I got to the point where I couldn't go to visit Anna on her special half birthday, so I stayed home and my neighbor friend watched after me while everyone else went to the hospital to hang out with Anna. Anna's grandparents bought Anna a half cake, and Anna's nurses made her a sign. I was so sad to not be a part of that. I should have listened when they told me to take it easy. But, I have pictures! I guess everyone thought it was a neat idea to celebrate half birthdays!


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Links to other Monday Memories

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Shelli
Kimmy
Candace
Yellow Rose
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Libra Girl
Mama Kellys Musings









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Friday, March 10, 2006

Anniversary

We celebrated Anna's Anniversary last Monday! I updated on that day with her transplant story, but now I want come back to present time! We really celebrated the night before her actual anniversary by going out to eat with Anna's Grandparents. Mary and I also made a cake for Anna. Now, I am no baker, but this one turned out pretty well! (with help from Mary, that's probably why it turned!) We like to make Anna's anniversary a special day, so the day was ended with a few gifts for her. Nothing huge, but she has wanted roller blades for a while, I believe it's been since Mary got a pair for her own birthday in September. Jason and I got her the roller blades of course. Grama and Papa got her a helmet, knee pads, elbow pads, and wrist guards. She's set! Mary even spent some of her own money and got Anna a Dora playground ball! Anna had a nice day, and she felt very special. She deserves that.


Here are some pictures of Anna's special day:

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Yesterday Anna had transplant clinic for her four year visit. She also had her routine yearly ultrasound and blood work. As always, Anna was as good as gold. They were busy in the lab, and it took us a while there. We ran into our liver friend Natalie there, so it helped for passing some time. It's so hard to not want to look at Natalie's pretty little face, she is such a sweet girl and her parents are awesome! It's always nice to see friends in the hospital!

So we got in the room, and Anna stuck out her arm to let them know where the needle goes. Sat and watched them put in the needle and talked to the lab tech while she was filling up the vial's. Good old Anna. They all love her down there, probably because she doesn't put up a fight, ever, and because she is so freaking adorable. She doesn't even flinch, cry or say ouch. I am always so proud of her with that!

After getting her blood drawn, we went to ultrasound. Anna wasn't able to eat or drink that morning because of having the ultrasound. Poor thing was starving, and we didn't get done there until quarter to eleven. I hate starving my child. She laid still for her ultrasound, even held her breath when they asked her to so that they could get good pictures. The only thing she complained about was that she was thirsty and very hungry. After the first tech was done and while she was waiting for them to ok her pictures, they let Anna eat a snack. Luckily I was thinking when we left that morning, and I had a bag with juice boxes and snacks for her.

After that we headed up to transplant clinic. There wasn't a long wait there, thank goodness, because Anna and I were so ready to go so that we could eat (I usually don't eat either when Anna can't simply because it wouldn't be fair for her, and I would feel guilty). Everyone was very pleased with how Anna is doing. There wasn't much for them to say! Anna is in the 75th percentile for height and weight! Her liver numbers came back from the lab, and they were perfect! Her liver feels nice and soft, she doesn't have any swollen lymph nodes and all her vitals are perfect. We heard the word perfect many times yesterday! Dr. Alonso looks at Anna in amazement at how well she is doing, and has done since her transplant! Her weaning is doing good, she has not showed any signs of rejection since we started that. They won't lower her dose right now for fear of rocking the boat, but I am fine with that. She has gotten a lot less sick this year than last year before we started to wean. That's because of being on such a low dose of Immune suppressant. It will be little by little, and that is fine, I am happy with how well things are going too!

Sunday, March 05, 2006

Monday Memories: Anna's Transplant!



Monday Memories: Did I ever tell you about In honor of Anna's 4 year transplant anniversary today: The story of Anna's transplant.


Continued from Last Week

We had a lot of up and downs during Anna's PICU stay. It was one step forward and two steps back. Once Anna's swelling went down, she looked terrible. Now, her eyes were sunken in, and her color was no longer yellow, it was orange. Her bili rubin was high at 26. That day that I walked in to see her, instead of being swollen, which I was having a hard time dealing with in the first place, she looked even more sick with the fluid off of her. There is a lot that goes into being in the PICU. Anna had her fair share of blood transfusions, respiratory therapists, CT scans, ultrasound, x-rays, tube adjusting, etc. There were a lot of lines that went in and came out. There were times that Anna's heart rate dropped dangerously low. A few close calls. I spent a lot of time singing to Anna, holding her hand, reading to her. Lots of conversations with doctors. I was there everyday as early as I could get there in the morning so that I wouldn't miss rounds, and usually stayed a few hours past nurse changes. If we happened to get a new nurse, I would want to stay to get to know her before leaving. I always had my cell phone close to me when I would not be in the hospital, and still called the hospital a few times when I wasn't there to make sure Anna was doing ok. I was always worried that something would happen while I was not there. I hated not being able to sleep in her room with her. I always felt bad leaving her, nervous. I made sure they knew to call me no matter what, no matter the time. Sometimes I wondered if maybe I should just stay up all night in the PICU with Anna, but I only did one night, and that was hard.

This stay was wearing on me. Jason had to continue to work, and I was there all day on my own. I would get a visit here and there from friends, and family. It had to be hard for people to visit when it was such a stressful, uncertain and sad time for everyone. People didn't know what to say to me. Once in a while I would get a visitor that would offer to get lunch with me. I always appreciated that. I didn't like to eat in the cafeteria by myself, and you can't bring food into the PICU with you. I got Jason's mom to give updates because I was so warn down. It was hard to get calls, and try to explain the situation to people over and over again. On Valentines day our favorite PICU nurse decorated Anna's crib with hearts cut out from red and pink construction paper! I hadn't realized that it was Valentines day until I walked into Anna's room. She also had two new beanie babies by her side. She was always covered with her blankie that had a guardian angel medallion pined to it with a gold safety pin that we got as a gift for her during this stay (she still loves her blankie to this day.)


Monday after Valentines day, I was tested to be Anna's donor. I had an appointment at Northwestern Memorial Hospital. I couldn't bare to have Anna alone that day, so I asked Jason's mom to stay with her while I was gone. I took a shuttle from Children's to Northwestern. They actually dropped me off at the University. I had no idea where I was. Luckily, I knew a student on the bus that happened to work in the liver unit at the time Anna was in with cholangitis. We talked about everything that happened with Anna since then on the way. When we got off the bus she pointed me in the right direction. There are a few building for the hospital, and they are not connected. This hospital is HUGE! After asking many people where to go, I found where I was supposed to be. I first met with the nurse practitioner, Lori. She was great! I had a regular physical exam, was asked a lot of questions. I had blood drawn. I met with a psychiatrist. They need to make sure you are not being pressured into doing this, and that your mental status about the whole situation is ok. The GI doctor let me know that I could die from this surgery. Well, you could die from any surgery. I knew this wasn't a minor thing, but I was ready to do what it took for Anna get a liver when she needed it. I knew I was putting myself at risk. I was ready. I also had a CT or an MRI (I don't remember which one it was). All the other testing had to be done the next day. There was a lot that went into the tests, it couldn't be done in one day.

We didn't get an answer right away, and that drove us nuts. I believe it took a few days for a definite answer. The day I was told that I would get a phone call, I was a nervous wreck. I sat by the phone all day, didn't get up for coffee, food, or a bathroom break. I believe Jason was with me that day. It killed him that he had to be work through most of this. I can't imagine having to work all day, knowing that your baby is so sick. He had to work. There was no way he could loose his job, and he knew that after the transplant, he would need to take a lot of time off to care for the both of us. But, he was there that day, and I was glad. Every time the phone rang my heart would race. When we finally got the call, I remember I could barley say hello. It was Lori from Northwestern. I was a match! She asked me again, "are you sure you want to do this?" I said "yes, without doubt!" Jason knew as I was on the phone, he could see it in my face. It was a relief, and it was scary at the same time. To know that Anna was going to have such a surgery was scary. To know that Anna was going to get her liver, that we had it lined up for her when she was ready, was the biggest relief to us. Jason was worried for the both of us, but we were all ready. After I got the call, Anna's doctors came in. They knew already. They too, made sure that I was ok with all of this. They wanted to schedule the transplant for April 3rd. They wanted to give Anna time to fight off the infection that was running through her little body, or the transplant would be too risky. Although, if things got worse with her condition they warned me that it could be her only chance, and it would be done on an emergent case. This was scary for us. To think that things were that bad, and if they had to do an emergency surgery, that would be even more risky.


Anna had more up and downs, and they kept pushing her transplant up and up. Everyone was praying for Anna. One day, she started waking up a little here and there. Then, one day, she was back. She would smile through her breathing tube. She reached for me. Then, she started to breath over her vent. It was like a miracle. Everyone, including her doctors, were shocked. Her breathing tube was pulled on the 27th of February. Now that she was doing so much better, they didn't want to take any chances. Anna's transplant was scheduled for March 6th! They bumped it up, and it was because she was doing well, not because it was emergent! This was great! She was put on oxygen, and moved to the 6th floor the next day. The first two days after leaving the PICU were the hardest. Anna was having withdrawals from her sedation medications, and she was crying constantly, for two days straight! I was crying right along with her. All I could do was hold her and try to comfort her. Try to get her to rest. There were a couple times that I was able to get her to sleep for a little while. There were also a couple times that I needed to leave her with someone else. It was so emotionally draining to see your child like that. Although, as soon as I would leave I felt bad, and would come back right away after grabbing a snickers bar, or a bottle of pop, or a bathroom break. After those two hard days, Anna became herself again. We spent some nice quality time together before our day came. I was especially glad to sleep in the same room as Anna once again, to not have to leave her every night.

Here are some pictures of Anna during this time. I never felt up to it, to take pictures of her in the PICU. It seemed weird to me to take pictures. Jason's parents were the only ones to take pictures of Anna during her hospital stays. Now, I regret not having more pictures, but I am very thankful for the ones that we do have. These are from a visit from when Jason's parents came with Mary to finally see her baby sister. During her time in the PICU, we didn't let her visit but one time, and only for a short while.


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I was to leave for the hospital early the morning of transplant day. Jason spent the night with us in Anna's hospital room. Neither of us really slept. I was worried for Anna. I hated the fact that I couldn't be there to see her off to surgery. I wouldn't know what was going on, if everything was ok with her. I was worried for Jason. It was going to be hard for him to have the both of us in surgery at the same time, having to travel back and forth that day. Jason came with me to the hospital. I gave Anna so many kissed and hugs before leaving. That was one of the hardest things to do. Saying goodbye. When I finally worked up the courage to leave, the nurses on the floor were so supportive. They all hugged me, and told me what a great thing I was doing for Anna. That made me feel good.

It was still dark when we went out to the shuttle that was to take us to Northwestern. As we pulled up to the building, I started to get nervous. We got to pre-op, and I got into my gown, got an IV, and epidural. The rest would be done after they put me out. We met with my surgeon, Dr. Abecassis. He asked me, once again, before being wheeled down to surgery, if I was sure. I was so sure. I hugged and kissed Jason goodbye, told him to take care of Anna. "Give her kisses from me when you get back." He promised to be back when I woke up. Obviously, I wasn't there for the rest. Jason and I have talked about the experience many times. I know that after I was wheeled in, he went right back to Children's. My surgery was going to start right away, and Dr. Superina (Anna's surgeon) was there to make sure of my liver, to help prepare it for Anna. They took Anna down at about 11 am to prep her for her surgery. Mine was done at around 1:30 in the afternoon. Jason didn't get all the updates that he was promised, so he was not sure what time my liver got there, or what time Anna's started. They called when I was in recovery, so Jason came to see me. I slightly remember this visit. I remember Jason calling me his hero. That, I can remember. I was very out of it, he told me, but I did ask about Anna. She was still in surgery at that time. I told Jason to go back there, I would be fine here on my own, Anna needed him there with her.

Anna was done at around 8:00 in the evening. When she was done, both surgeons came out to talk with Jason. They let him know that everything went very well. Anna's new liver stated producing bile right away! Her old liver was horrible, very hard and diseased. This new liver, although a little large, looked great! Of course the first 24 hours were critical, but they were very optimistic! When I heard the news I was so very relieved. I got phone call from Jason after he talked to the doctors. Oh, What a relief! Jason came to be with me for a little while that night. I was in so much pain, and so medicated that a lot of this is a blur to me. I do, remember the calm that came over me when I heard that Anna was doing well, and to see that look in Jason's eyes.


Links to other Monday Memories

(If you participate, leave your link in the comments and I'll post it below)

Shelli
Kimmy
Candace
Yellow Rose
Rowan
Libra Girl
Mama Kellys Musings









Click here for the Monday Memories code
Click here for Shelli's blog




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Thursday, March 02, 2006

Things that make you go Mmmm.....

This evening I was in the kitchen doing the dishes while the kids are were in the living room. Anna had an unopened sucker sitting on the coffee table. I reminded her earlier to not leave it lying around and to put it away until after dinner. Maybe she thought she might forget about it? Who knows, but that sucker just had to sit there and wait for her! Anna has her own reasoning for doing the things she does. Anyway, silence breaks. I turn off the water to listen. Every mother knows that silence isn't necessarily a good thing. All of the sudden I hear Alexandria humming Mmmmm, very loudly, and with a lot of passion. I walked into the living to find Alexandria indulging in Anna's heart shaped sucker that she received from one of her classmates at school on Valentines day. She must have unwrapped the sucker herself because nobody other than me, was aware that Alexandria existed at that moment. Anna was in her bedroom, and Mary was reading on the couch. She was loving every lick of that sucker. I didn't have the heart to take it away from her. It didn't' matter that she was making a flaming red, baby drool mess. Anna didn't even mind when I called her out of her room to take a look. I thought for sure that Anna would go ballistic! We all had a good laugh at Alexandria's first real taste of supper sweet candy! She Mmmmed her way through that whole darn thing!

And while I am on the subject of cute kid things...This one made me laugh too!
Jason has a pair of Michael Jordan shoes. As he was putting them on the other day and Anna got very happy. Anna is always happy when he wears those shoes. The reason is because it's one pair of shoes and they are actually two different colors. I mean, one is red, with white trim, and the other the exact opposite, and he purchased them that way! Anna is always up to wearing the most funky, fun things. She can't just wear plain socks, they have to be bright, or have some kind of design on them. Like Christmas socks in the summer time. So, Jason went into detail, and tells her that they were Michael Jordan's shoes, and what a great basketball player he is, blah, blah, blah! (Jason is very passionate when it comes to sports) After he is done telling Michael Jordan's life story;) Anna asks him, very seriously, "So, Michael Jordan gave YOU his shoes?"