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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Yellow Rose
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Mama Kellys Musings

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Friday, March 10, 2006


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.


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

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Yellow Rose
Libra Girl
Mama Kellys Musings

Click here for the Monday Memories code
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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?"

Monday, February 27, 2006

My Monday Memories

Monday Memories: Did I ever tell you about When Anna was admitted to the Pediatric Intensive Care Unit

Continued from last week.(actually, two weeks ago!)

I brought Anna early in the morning, on February 6th, to Children's Memorial Hospital. After her being very irritable all night, neither of us got any sleep. Our home health care nurse was supposed to come, but I didn't even think about that until we got to the hospital. I woke Jason up as I was leaving. I had to tell him that we were off to the hospital, that I thought there was something more going on with Anna. I think it was still dark by the time we left. Jason had to leave early that morning too, to go to a meeting for work, but he would bring Mary with him. I don't think either of us thought this would be anything more than an ER visit, maybe an over night thing.

Since Anna still had a few days left for her IV antibiotics I had started her dose that was due at this time right before we left, figuring we would arrive just as it was done infusing. We arrived at Children's in the ER, and got a bed right away. They flushed her line, and cleaned the area since that was what our nurse was going to do when she came. We saw some doctors, but didn't' get a room until Anna's doctors came in to tell us that they thought her cholangitis was recurring, and she was to be admitted to start some stronger meds. Dr. Emerick described this as we needed a bigger hose to fight the fire.

I didn't call Jason until we got a bed on the liver floor. I was very upset at this point. I had noticed that Anna's breathing was labored, and we were having trouble getting a doctor in our room since they were already on their rounds. I knew that something wasn't right about the way she was breathing. Jason asked me to calm down, we were in the hospital so she will be looked after. I got the head nurse in the room and she got the doctor for me. I don't even remember his name, but he was working with the liver team at the time. I was holding Anna, and he took one look at her and walked out. I thought he was being rude, but he came back with Dr. Emerick, who agreed that they needed someone from the PICU. At this point I was hysterical ( and am now just thinking of the way I felt at the time), and Dr. Emerick (who has the best bedside manner, ever) tried to explain to me that Anna would probably need to be sent down to the PICU for closer observation. I called Jason and told him what was going on. I don't know how he even understood what I was saying. Looking at my yellow baby having trouble breathing with her belly so swollen that her belly button was sticking out the way that a pregnant woman's would, knowing that she needed intensive care, I was very upset. And to make matters worse, as I was talking to Jason on the phone, blood started pouring out of Anna's picc line. At first I had no idea where this blood was coming from. I asked Jason to get here as fast as possible, hung up with him and called the nurse in. I don't remember why her line was bleeding like that. I started to defend myself by telling them that the last person to take care of her line was the staff down in the ER. They weren't trying to blame me, but at that the time I was wanting to point blame at someone. The nurse fixed the problem (I still have no idea what went wrong with that) and the PICU team came up to get Anna.

I followed Anna in her bed, behind the staff, feeling like a lost puppy. I was covered in blood. They were still trying to get me some scrubs. They were working fast with Anna once we made it to her room, and I couldn't see past them. I was still waiting outside of the room. Jason arrived. He left work after we hung up earlier, right away. I don't know what he did with Mary, but she wasn't there and I was glad because she would have freaked out. Jason looked at me with horror. Like, why are we here? What is going on? Why are you covered in blood? Soon after Jason arrived, they came out of the room and explained to us that Anna needed help breathing, and they needed to intubate her. We couldn't believe this was happening now. Of course we signed the consent. We were kicked out during the intubation, into the waiting area. They finally got scrubs for me, so I went in the bathroom to change. I just threw my blood stained clothes is the garbage. When we were called back into the room everything was done. Anna was laying peacefully in her bed, we met her nurse who explained some things to us like how Anna had to be sedated, and the many pumps and lines. I can't begin to explain how this felt. Everything happened so fast, we had so many questions and we had so much thrown at us all at once. There we were, sitting in the PICU, looking at each other in disbelief.

Jason had some pictures of Anna with him that our home health nurse had with her that morning. That's when I remembered, that I hadn't remembered she was coming that day. She had pictures of Anna, and she gave them to Jason as he was just leaving to go to work. I hung the pictures of Anna up on her bed. I remember showing the nurse the pictures so that she knew what Anna looked like without the tube down her throat, and taped to her mouth.

I honestly don't remember that whole rest of the day. I know we had many discussions with doctors, and nurses and a social workers. Jason left to go home later that night to get me some stuff from home, and I went to his parents house to sleep. It was nice that they lived close to the hospital so that I didn't have to worry about the morning traffic from the suburbs, and didn't have to sleep in the waiting room, or stay up all night in the PICU. Jason got back to his parents house very late.
[Wait, now I remember, Jason's dad dropped Jason's mom off at my house to take care of Mary while Jason was at work.]
It was very late at that point, and I couldn't sleep. I was up in the living room "watching" TV. He came back with a pair of cell phones. He thought now, at this point, we would need them. He was right. I needed to be able to reach him in case anything more drastic were to happen with Anna's condition, and if I weren't there, and the doctors needed to call me.

We got to the hospital very early the next morning. I thought we walked into the wrong room. Anna was very swollen. All over the place. This scarred the crap out of us. We had no idea why, or what was going on there. It had something to do with the sedation medication it think. I was crying, she didn't look like the same baby. Not our baby. We talked to the doctors at rounds that morning, and mentioned something about putting Anna on the transplant list. I don't remember if they were asking our permission, or if they had already done it. Later that day we were told she was on the list, but not status 1 because of her unstable condition. Maybe it was that she was on the inactive list. [I have forgotten a lot of this stuff so forgive me for all of my "I can't remember" stuff] Then someone said something about maybe considering looking into living donor transplantation.

I remember when we were first told that they had a good living donation program. It was way before all of this. Maybe after her Kasai? I remember thinking that there was no way I would want to be tested first. I hoped that they would ask Jason to be tested, and that he would be a perfect match. I am embarrassed about thinking that now, but it's the truth. I hoped that it wouldn't be me.

As soon as I heard them mention that now, after Anna being in the PICU for only 1 day, I had this feeling come over me. I knew it would be me, I was ready and very willing. I was at peace with it, I didn't like to see my baby in this condition. I was ready to do whatever it would take to make her better. I knew my blood type, and I asked the nurse what Anna's was. The same. That was it, It would be me. I just knew it!

Of course, it wasn't that easy, but it gave us hope. Anna was in no condition for a transplant right then. Things needed to be set up between Children's and Northwestern (they don't do living donation in Chicago at the same hospitals) We learned that Anna was septic, the cholangitis infection had spread through her blood stream. We had to put this wild fire out, with a huge hose.

Next week: The month leading up to Anna's transplant. I hope to have her transplant story up by her 4 year anniversary. March 6th.

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Friday, February 24, 2006

I know, it's been too long!

Geez, I can't believe that I have gone this long without updating! Things have been pretty crazy around here. All three of my girls have been rotating sickness. It started a few weeks ago with Anna having bronchitis, and Alexandria having fevers to be later diagnosed with an ear infection. Anna sounded as if she was going to cough up a lung, and Alexandria was understandably crabby. I had a lot of sleepless nights since then, but things a starting to calm down.

Jason started a new job last week also. He finally got fed up with his previous job. He wasn't going to quit before he found a new job, but with what happened the day he put in his 2 weeks notice, I was right there a long with him.

One week after I took the girls to the pediatrician Alex was up all night coughing. She probably caught what Anna had. When we woke up the morning (Valentines day come to think of it) after my very restless night with Alex, she spiked a fever of 102. She didn't look well, tired of course because she was up all night coughing. Still, you could tell in her eyes that she wasn't well. Her chest was rattling, and she was coughing up a lot of stuff, very clingy to me, I couldn't put her down for a second. Before I got Mary to school, I told Jason what was going on with Alex and we both agreed that I needed to bring her in ASAP. Jason was supposed to go to work, and Mary still had to get to school, Anna had her ballet class and school to go to also that day. Jason decided that he had better call into work so that he could take care of the other girls while I took Alex in.

He called in 2 hours before he was supposed to be there. They gave him shit about it. Jason works in sales, and he was supposed to be at the store that he managed by himself that day. They said they didn't have anyone to cover for him, so he had to come in. I didn't know how long I would be at the hospital for (my pediatrician wasn't in that day, so I had to take her to the ER) They questioned him, like he was lying about his daughter being sick! Unbelievable! He ended up going in, I put off taking Alexandria to the doctor until the girls were done with what they had to do that day. I couldn't keep Anna out of ballet, she already had missed three classes because of being sick. Also with it being valentines day, and Anna working so hard to write her name on 18 valentines cards for her classmates, I couldn't keep her out of school either. She only goes for two days a week, and loves every minute of it. I brought Alexandria to grandmas, were she slept for 3 hours, so that was good and I didn't have to drag her around all day. The snap she took was good for her, she woke up feeling a Little better and drank a whole 8 oz bottle.

During all of this, Jason had some serious conversations with his boss at work. His boss said that if it were his daughter, and it was emergent, he wouldn't have gone to work or waited around for someone to give him an OK. So, he tells Jason that he had to come in, then asks him why he bothered?! He was still questioning Jason. That's when Jason turned in his two week notice. Mind you, Jason hasn't been in a good position, or on good terms with his boss there for a while now to begin with. This put him over the edge. What, you can't have a family when you work for this place?

I was worried because if he didn't get a job in those two weeks it was going to hurt us financially. It ended up that called an old boss that he worked for when everything went down with Anna, and they welcomed him back right away. Jason started that job the day after he put in his notice. It's not a job that he wanted, but it's better than the one he just left (money wise) and it will have to do for a while. This is where Jason worked when Anna was sick, and they were very good, great even, about the time that Jason needed off.

So, that day when I finally got Alexandria to the doctor ( I ended up taking her to an immediate care center). They took a chest x-ray and that came out clear. That surprised me because of the way she was breathing. When the doctor looked in her throat, it made her gag, and she coughed up a nice big wad of mucus. After that she sounded so much better. She did have bronchitis, a sinus infection, and an infection in the ear that wasn't infected when we took her in the week before. He said that the ear looked like it was about to perforate. Yikes, no wonder she felt the way she did. Poor baby. He put her on more antibiotics, and gave us Albuterol inhaler. She had a better nights sleep that night, but woke up with a diaper blow out. Being on two antibiotics at once, along with a decongestant and Tylenol for her fever, she had stomach upset. So, the next five days we were dealing with that. Then Mary cough the cough, along with a fever. Then Anna started to have unexplained fevers for four days in a row.

Anyway, like I said it has been crazy here for they are progressively feeling better now. Thank God I never got anything, it was hard enough trying to take care of three girls simultaneously and sometimes all at once. I feel like we have been in the doctors office more than home. Now, I have spent the past few days disinfecting my house. Hopefully we're done with all of this.


We are coming up on Anna's 4 year transplant anniversary soon! I can't believe four years have gone by already. Anna continues to amaze us everyday. I'm not sure how we will celebrate. I think we'll let Anna pick a restaurant to eat at. She has been asking for Rollerblades, so I think we'll just might have to buy some for her! Along with elbow pads, knee pads, and a helmet of course. I want to give her the world, but I think roller blades will have to do for now. Lately she has been asking to go back to Disney World, and has asked me, "wouldn't it be cool to live at Disney world!" I tried telling her that if we lived there, it wouldn't be as exciting anymore. Yeah right, try telling that to a four year old. Then she told me that maybe Alexandria will be special like her, and be able to make a wish, and she would wish for Disney World too, because she (Anna) would tell her how much fun it was. We had a long conversation about that too.

We'll be going to Children's for transplant clinic, blood work, and her yearly ultrasound. If everything look good we will be going for yearly visits then, but of course still go every three months for blood work. I would also like to talk to them about her immune suppresant weaning and how they feel about how that is going. Obviously, I now it's going good so far, so I wonder if they might wean her down a little more that day! Maybe, Maybe!!!!


Last matter of business: Anna's friend Annika.

I have written about Annika in many of my posts, but for those of you who don't know her story I will write a brief summary (or get her full story her). Annika is also a liver patient at Children's memorial hospital. She is a year older than Anna, and has already had two Liver Transplants. She has had many complications post transplant including major bleeds. She has spent this past thanksgiving and Christmas in the hospital (in the PICU on Christmas day, unconscious) Only just recently she was able to go home, but the doctors have warned her parents that this will only be short lived. She is in need of another transplant, and to make matters worse her insurance company has cut her off for the year, and it is only February! They are having to fund raise now so that they can pay Annika's many medical bills. If you would like to help by visiting her site here, or Annika's Insurance policy, or her COTA fund it would be more than appreciated. I am going to put up a few buttons to on my page permanently, linked to these sites.

We have met Annika and her family on a few occasions, and I can't say enough great things about them. They don't deserve what they are going through right now.

Here are a couple pictures of Annika and Anna:

September, 2005. Visiting Annika in the hopspital.
IM000330 IM000331

Annika, Mary, and Anna two summers ago at the zoo.

Monday, February 13, 2006

Monday Memories: Anna and Cholangitis

Did I ever tell you about Anna's first bout of Cholangitis

Continued from 2 weeks ago (sorry for the delay, I had to take care of my sick girls all week):

We were very lucky to be able to have Anna home right before the holidays. We sure had a lot to be thankful for come thanksgiving time. Anna came home a few days before Thanksgiving day. She was doing great. I was already getting used to giving her all of her medications, and she took them all so well! We celebrated Thanksgiving with Jason's parents only that year. I was a little weird about germs, and we have a big family on Jason's side. Lots of Italians equals lots of kisses and baby passing. But it was nice.

Our first checkup went good. Dr. Superina seemed pleased with Anna's progress! For a while after her Kasai she was a peachy color! We continued to go for regular checkups at Children's.

Christmas time came, and Anna continued to do well. We all thought we had the worst behind us, convinced that Anna would be in that small percentage of Children living with BA into their Adult years.

It was probably the week before Christmas when I noticed that Anna was getting her yellow color back. When we went for liver clinic they told us that her bili rubin could go up and down for a while. I was disappointed because she was looking so good for a little while, and I didn't want to ever see that color on her again. But, she was still doing well, her belly wasn't too bloated and she seemed to feel good. It wasn't until after New years that Anna started to act as though she didn't feel well. I would be up with her all night, and she would be crabby throughout the day. I took her to clinic, and they still didn't seem too concerned. At this point we were going for more frequent lab draws. One night I couldn't take it anymore. She was up all night, every night, and she was getting more crabby during the day. It took me until she was inconsolably to take her in again. Not wanting to go by myself with Mary and Anna with the way Anna was acting, I went to pick up my mother in law to come with us. I needed that support. It was later in the evening by the time we got to Children's ER. We got a bed in the ER right away. I was shocked. With this being the first time in the ER at Children's, there were so many people waiting, but we got seen right away. Other people in the waiting area were not happy. I heard them ask why we got seen right away when their child was _____(fill in the blank) [Skipping ahead, this is how it always would be when we go to the ER in Children's and we have gotten many evil looks from parents. I swear, if I ever had to the ER and people got seen before me, or my "not so sick" child I wouldn't blink an eye. There are reasons for this] We were seen again by many doctors again. This was the first time that we would meet Dave. Dave was the new Liver nurse/practitioner working with the liver team. He was kind, and took a liking to Anna right away. Well, who wouldn't. We got an IV, blood work and other stuff done I'm sure. Thinking back now, I was fairly calm. A lot more calm than I was the first time we walked into that hospital. The staff was great with Mary, got her some snacks, and put on a movie for her to watch. When we learned that Anna had to be admitted for a biopsy, Jason came when he got off work to pick up Mary and his mom.

I don't remember how it all went down after that, but the biopsy was probably done the next day, followed by having to wait for the results. It turned out that she had Cholangitis, an infection in the liver. We were told that this is a sign that the Kasai is working. That since there is a way for the bile to come out, that means there is a way for bacteria to come in. But, I wasn't prepared for what we were about to hear. Anna would need a Picc line. This is a more long term line than a regular IV. It could stay in for months. She would go home on antibiotics that I was to administer, for a four week course. I would have to learn how to care for the picc line, and we would need to have a home health care nurse come to clean the picc line area, and draw blood. OMG!!!! Are you kidding me. I'm not a nurse. I didn't think I would have to do all this. I thought that was on all of these people here. But, we wouldn't' want to stay here for four weeks. At first I thought, no way, I couldn't handle that, but after learning some from the nurses about how to be sterile and how to flush the line I became more comfortable. I had to have a positive, I can do this attitude, or I wouldn't be able to do it.

Anna stayed for a week between getting the biopsy done, waiting or the results, and getting the picc line in. When we got home it seemed like we were doing something wrong. I guess it just felt weird to bring your baby home with something still attached? But I was confident. I knew I could do this. We were scheduled to have our first box of all of the medical supplies that we would need, delivered first thing in the morning. Our home health care nurse was to be there early too. They sent us home with enough supplies to last us through the night. I was feeling confident, I knew I could do this. The first antibiotic that I gave to Anna was done soon after we got home. She was on two different strong antibiotics, Gentamicin and Piperacillin. I infused it, by hand and flushed her line like I was supposed to. I don't know what happened, but the next dose, due later that night, wouldn't go through. I was taught to never force it, so we headed to the ER. Not being home for even 4 hours, we was headed back. I went all the way back to Children's because I didn't feel that we would receive the same care at our local emergency room. Since it was practically in the middle of the night, I flew. I was worried because she was supposed to be having that antibiotic right then instead of heading to the hospital. I was so upset with myself. Talk about a confidence buster...Did I flush her line with Saline instead of Heparin? Again, we got a bed right away in the ER, and they were able to flush her line out. They had to work at it, looked like I could have done that at home.... We got back home only an couple hours before our nurse go there, and just in time for our huge package of medicines, and medical supplies. Actually, I think it was two boxes. We also got a pump for one of her medications that took a half hour or so to infuse. Man, I was tired, and talk about overwhelming.

Our lovely nurse came just in time. She gave me some more information on how to care for Anna with her picc line, and answered many questions that we had. It was a tiring schedule of 7 infusions per day, and having to wake up in the middle of the night to administer them. After a few days, it became easier though. Like clock work. We didn't have anymore problems with her line getting clogged. We managed to stay away from the hospital for 3 weeks while she was getting her antibiotics and blood work at home. She never seemed to get better, and it seemed as though her jaundice got worse by the day. I did what I was supposed to do. I used to blame myself, thinking maybe I wasn't sterile enough, or I didn't infuse her antibiotics right.

Anna was admitted to the hospital February 6th for recurring cholangitis, and after only 2 hours on the floor, she was admitted to the PICU for being Septic. More on that next week.

Here is a picture taken by Anna's home health care nurse:

Anna sporting her new Mariners jersey sent by Aunt Jessie in Seattle, along with her new picc line.

Next week: Anna is admitted to the PICU, and put on the transplant list.

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Monday, February 06, 2006

No Memory

***Update on bottom half***
***Update again on bottom, bottom half***

Ok, sorry guys. I know I was committed to doing Monday Memories every Monday, but I don't have one this week. I had been writing my story little by little during the week, and even having it up by Sunday night, but haven't had that chance this past week. I will try later to maybe have a late Monday, or an early Tuesday memory. Maybe I will skip it all together this week. We'll see how today goes.

For the past few nights I have been up with a sick baby. Alexandria has had a fever on and off for two days. Of course this morning she is great, but I will take her in anyway. It got pretty high so I don't want to take any chances. Also, for a few days Anna has had a cough that is getting worse by the hour. It is starting to affect her sleep now. She woke up last night a few times wanting some cough medicine, and eventually crawled into bed with us last night. I didn't get much sleep, Anna usually takes up the whole bed laying sideways and kicking on us. This morning she isn't able to eat because she is coughing so much. I have been trying to get a hold of our pediatricians office so that I can get both girls in. They don't pick up the phone anymore, they have voice mail now, but if I can't get a hold of them with in the hour, I will call his answering service and have him paged. Wish me luck! I WILL get in.....I promise.


Updated from this morning

Ok, back from the doctor. I took Anna's temperature, and it came back at 100.5. I know that this is not very high, but it gave me reason for being more concerned than if it were just a cough. So, I had the doctor paged and he got back to me right away. He asked me to bring them in ASAP because he was booked today. I love our doctor, he put us in a room right away so that the kids weren't exposed to the other sick kids in the waiting room. Turns our Alexandria has an ear infection, so that explains the fevers. Anna has Bronchitis. He gave her a nebulizer treatment. Now both of them are on antibiotics.

I am trying to phone the doctor again now because when I got home I researched bronchitis a little more. I know Mary and Anna had it last year, and it lasted a while but I don't remember them having a fever from it. The doctor said it was contagious, so wouldn't that mean that it would be a viral infection? Aren't they not supposed to give antibiotics for a viral infection? Aren't they only given for a Bacterial infection? Bronchitis can be viral or Bacterial, and a bacterial infection isn't contagious...right? Ok, I am a little confused. I know this stuff!!! Why can't I think straight right now?!

Now Anna has a temperature of 101.5! A degree higher than this morning. Hope the doctor calls back soon!


Updated from yesterday

Everything is fine. I always get a little nervous when Anna has a fever that high. I overreacted. Doctor told me that it could be Bacterial, or Viral. He said better to treat her with antibiotics either way when it is Bronchitis. Antibiotics will treat a Bronchial infection, even if it is viral. I just kept thinking that you don't treat a cold with antibiotics, and that's viral. I guess I needed a refresher course.

He told me to call him in the morning if her fever didn't break, and then he would run further tests such as a chest x-ray to rule out pneumonia if she still had a high fever. Before she went to bed her fever went down to 101.3. I thought it should have gone down more after giving her tylenol. I'm such a worry wart. Anna woke up around three in the morning wanting carrots with ranch dressing. Silly girl. She was bright and chipper, way different than yesterday (laying on the couch not eating or drinking) She was back to normal by the time we woke up to get Mary ready for school. No fever. Still coughing a lot, but no fever! Eating fine, drinking fine, being Anna! She was very angry that we kept her home from school and Ballet today though. She told us that she felt all the way better now, and she didn't want to miss what they were doing in school.

Friday, February 03, 2006

I'm getting this

Or am trying to. I came across this the other day. Since I have to renew my license plates this month, I will be getting a brand new set. These plates were thought up in honor of Walter Payton.

To learn more, click on the license plate.
Image hosting by Photobucket

Also, I found this article:

"Payton suffered from a rare liver condition--primary sclerosing cholangitis--but died from bile duct cancer, a side effect of the disease. There is no cure for PSC, but liver transplants often are successful; 75 percent of those with PSC have "a good quality of life after recovery" from a transplant, according to the American Liver Foundation.

Payton, who announced he needed a liver transplant in February, learned he had bile duct cancer in May but chose not to disclose it publicly. While PSC alone can be treated with a liver transplant, bile duct cancer precludes such treatment because the drugs used to help patients adjust to transplants weaken the body's ability to fight cancer. "


I'm not sure if I can change my plate number, but if I can I might try to get that personalized. (igvelfe) or something like that. I will try to come up with a few options in case that is already taken.

People ask me why I am so into this kind of stuff. Well duh. I know Anna got part of my liver, but still. What if I wasn't able to be her donor? Come on people. Whatever I can do to help promote organ donation awareness, I will do!

Thursday, February 02, 2006

Feeling sad......Maybe a little guilty

Thankful Thursday: What Sarah is thankful for this week

First off I want to let you know that this is my first Thankful Thursday. I haven't thought much about blogging lately. I have been busy with the kids as always. Yesterday I was feeling sorry for myself all day. I don't know why, but I have been in this crappy mood that I just can't shake. Jason hasn't been doing great at work, and as he is looking for another job we are getting far behind on a lot of our bills. He is getting discouraged because he has been turned down for a few "good" jobs. I know he feels as if he has let us down, and that is probably my fault that he feels this way. Because I grew up in a big house, I often comment on how I hate that the girls have grown up in an apartment. We have little space. Jason, on the other hand, has never lived in a house, his whole life! Maybe he wants it more than I do. He feels that he has let me down, and let the girls down.

Late last night and this morning I was catching up on some blogs, and fellow Liver friends. I just learned that our local liver friend, Annika is bleeding again. She just got to go back home after being in the hospital since before Thanksgiving. Everything was looking good for her, then all of the sudden she spiked a high temperature and had to be admitted again. Then, another local liver friend, Natalie who is approaching her 1 year transplant anniversary, had to be admitted due to high biliruben. That is a huge red flag for liver/transplant patients. She also had been doing good. Just like that. Prayers for these kids, please. Both of them have had a bumpy road since their transplants.

So, what the heck am I complaining for? I might not have everything that I want, but we are all healthy and we have each other. Anything could happen. Anna has been doing well yes, but anything can happen. Just like that. I hate that I have taken her for granted while I was feeling sorry for myself. How selfish of me. Why am I dwelling on the things we don't have? This is what I am thankful for this Thursday:

Anna's health.

My whole family's health.


The sweetest, most beautiful little girls.

A warm house.


All things that I take for grated.

My life isn't so bad. We go through hard times, but with our love for each other, we get through.

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Saturday, January 28, 2006

Monday Memories: Anna's Kasai

Monday Memories: Did I ever tell you about Anna's Kasai Operation

Continued from Last week:

I didn't sleep very much that night. Jason got to the hospital early like he had promised. We waited all day for the results, hoping that we would know early. Still having hope of this all being a misunderstanding, or maybe something a little more simple and easy to fix. Neither of us wanted to leave the room for fear of missing the doctors, so we sat and waited and waited and waited some more. It wasn't until late afternoon when Dr. Alonso came to the room. I had just come back up from getting something to drink out of the vending machine in the cafeteria. They always come when your not there. Of course, they waited for me to come back before pulling us into the conference room. I remember following Dr. Alonso down the halls, feeling as though we were walking in slow motion. I know there were other liver team members who tagged along, but I only remember talking with Dr. Alonso. When we entered the room, the sun must have been setting, because it was blaring through the blinds. ( Gosh, I don't even remember this till now, writing is bringing back so many memories.) Sitting there, clenching my soda bottle tight, we heard the words Biliary Atresia, again. That was it, that's what it was. I don't know what she said after that. We were holding on to the hope of this being something else. It hit us, again, like a ton of bricks. Anna's Kasai was scheduled for Monday, November 12.

We went back Anna's room and I looked at her with fear. Fear for her. We were told that we would be able to go home for the weekend since it was only Friday, so that's what we did. Any time you are allowed to go home, you want to take it. Even if it's only for a day or so. Hospitals are no fun. Our neighbors were also leaving at about the same time, wishing us good luck with Anna, and we wished her the same for her daughter. The mother looked at us knowingly.

Our time at home that weekend was bitter sweet. Jason had to go to work Saturday, and we had to be admitted Sunday night for Anna's surgery early Monday morning. So, we only had one full day. We thought it would be best for Mary to remain with Jason's parents. I didn't know how to handle all of this, and we thought Mary would be worried. Kids can always sense when something is up. She was excited to be spending so much time with her grandparents anyway. Jason had to work Saturday while Anna and I spent some peaceful time together that day. I held her all day that day, took naps with her and got nothing done around the house. Jason's Aunt Mary made a surprise visit, she brought food ( feeding me made her feel like she was helping out, that's the Italian way ), and more information on BA for me she printed out from her computer (I didn't have a computer at the time). While I know she thought she was helping by cleaning my house, washing my dishes, bringing food and more crap for me to read, I just wanted her to leave. I was in no mood for company. Anna and I needed this time together, alone.

The next thing I remember was handing Anna over to the nurse on the morning of the surgery. We didn't even meet her surgeon before the surgery, so I felt like I was handing her to a stranger. Well, I guess really we were. I didn't know anything about anybody that would be in there with her and to think of them working on her for hours was very sad to me. I guess you feel like, it's me handing her over, putting her life in other hands, not knowing these people and if anything goes wrong I would feel like it was my fault. It's hard to let other people just hold your new born, you know? The surgery took 7 hours. It was nerve wracking in the surgical waiting room. Again, we didn't want to leave but they told us we wouldn't hear anything until half way through, so we decided to get breakfast. We ran into Dr. Alonso in the cafeteria. She asked if Anna had gone to surgery yet, and reassured us that it would be fine, and that Dr. Superina was the best. We were angry for not having met the surgeon before hand. Why wouldn't they talk to the parents first? It all happened so fast, just like that. Not even one week since the diagnoses. Anna was only 2 days shy of 8 weeks old. Now she is going through an operation, with a surgeon we haven't met. It's scary how fast your life can change.

After we ate, we stayed in the waiting room the whole rest of the time, besides the occasional bathroom break and phone call to Jason's parents. We saw families come and go. We watched the Proud Family over and over again. It must have been a marathon. Neither of us had the attention span to read a magazine. We just sat, and waited. We never heard anything half way through, and I am not sure why we never asked. Maybe I thought we'd be bothering them? I don't know, but it was scary. Maybe they didn't want to tell us bad news, or maybe they forgot about us sitting and waiting? That's what I thought. I don't think it was until an hour before we got to see her, when we heard that it was over, and they were just finishing up and would be bringing her to recovery. They would call us in when they got her settled in. They warned us about what we would see when we walked in to see Anna, but they could never really prepare you for that. We could barley see her, there were tubes all over the place. They had braces on her arms so that she wouldn't pull on anything. She didn't look the same, she was swollen. It was heart wrenching to see your baby like that. Anna stayed in recovery for another half hour or so before we got a room. There were no rooms available on 6 west anymore, so we had to go to stay the 5th floor, and stayed there until we were released from the hospital. I was upset, but I think maybe I was getting fed up with the whole hospital experience. We had to demand that they call the surgeon to come talk with us. We had many questions, and were shocked that we had to hunt him down. I guess we had this crazy idea that the surgeon should talk to the family! Looking back now, we over reacted. Dr. Superina is a great, don't get me wrong. That whole hospital is great, it just so happens that the little things got to us more then because they all happened at once. Between the bad experience in ultrasound, the waiting, not being able to meet with the surgeon before the surgery, and no updates during. Then we couldn't even stay on the floor that we should be on. We were not happy. He came in and talked to us no too long after he was paged. Not very much was said. We would have to wait to see if it would be successful. Once again, we wanted answers right then. We had this crazy idea that he would have a prognoses for Anna right away. We were naive yes, but how were we to know.

Anna was in the hospital for 7 days following her Kasai. She did very well, and everyone was pleased with her progress. It was nice to be able to bring her home. Mary was happy to be home and able to go back to school. Jason went back to work. Anna was feeling good, and her jaundice was clearing up some. Things got back to "normal."

Next week: Anna's first bout of Cholangitis

Sorry for the photo Quality. Since I don't have a scanner, I have to take pictures of pictures.

A pictures of Anna taken soon after coming home after her Kasai

Mary, happy to have her baby sister back!

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Wednesday, January 25, 2006

Thursday Thirteen: 13 New Things Baby Sister Alexandria Can Do

Thirteen Things about Alexandria

1. Say Anna (the best thing in Anna's mind!)

2. Claps her hands

3. Shakes her head no

4. Crawls faster than I have ever seen a baby crawl

5. Cruises along the furniture

6. Stands on her own for about 10 seconds at a time

7. Sorts shapes ( Blue circle in blue circle shaped hole)


8. Knows how to make us laugh

9. Therefore, makes everybody laugh

10. Says Mama, Da Da, Papa, Ba Ba,

11. Blows kisses

IM000042 IM000043

12. Says gaygee (doggy) geegee (kitty)

13. Crawls fast enough to get to gaygee and geegee's food bowls, put the food in her mouth while dumping over water bowls, all before Mommy could get to her, and laughs about it!

Little stinker:


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The Color Purple

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Thank you thank you Becca! After many days of trial and error, I was able to put some of my own music on this blog! I chose this song because it is one of Anna's favorite songs! I would sing this to her in the hospital, over and over again! She loved it, and still does. This version especially!

Let me know if you can hear it or not, maybe I am getting ahead of myself.

This version of "Somewhere Over The Rainbow", mixed with, "What A Wonderful World" is sung by Israel Kamakawiwo'ole.

Sunday, January 22, 2006

Moday Memories: The Biopsy

Monday Memories: Did I ever tell you about Anna's admittance and Biopsy

Continued from last week:
I don't remember what time we finally arrived at the hospital that day. We actually still had a bit of light though, I remember seeing the sun setting as we approached the Hospital. The whole day went by in slow motion. I felt like I was living in a nightmare. When we walked into the hospital, I had no idea where we were supposed to be. Did they tell us where to go? We didn't have her room number or anything. "Are you being admitted?" the front desk lady asked. No turning back now, she sent us to the admitting office to fill out some papers, take our insurance, and put some bracelets on Anna and gave Jason and I our parents passes. That was it, we were a patient"s parents at Children's Memorial Hospital. Up to 6 west we went with all of our papers now. I still remember them saying, "follow the train tracks to elevator A and your going to the 6th floor."

It didn't feel right that we were there. We went from being a happy carefree family with a perfect brand new edition, to this? This didn't happen to people like us. How are we going to deal with this, how much is this baby girl going to have to endure? We approached the nurses station with our papers, and then we were shown to our room. It was a double room towards the back of the unit, but it was just us at first. I was a little upset to think that we would have to share with another patient, this was hard enough to deal with, it would be nice to have some privacy. Well, at least for right now we were alone, I thought to myself. Alone my butt! There is no being alone in the hospital.

I can't remember how many different people we saw that day, and we had a lot of questions for them. We were told Anna was scheduled for an ultrasound first thing in the morning, then we would meet with Dr. Alonso who would do the biopsy. After things quieted down a bit, Jason left for his parents house, but promised to come back first thing in the morning. Thank goodness, Jason's parents only lived 15 to 20 minutes North of the hospital at the time. If he tried to go home and drive into the city in the morning, it would have taken at least an hour and a half, if not more. Traffic into the city in the morning is always horrible.

Jason got there the next morning before we headed down to ultrasound. The ultrasound took a while, it was very silent and uncomfortable in that room. I had been up all night and I remember wanting to crawl onto the bed with Anna and fall asleep. There was a bubbly fish lamp in there that Anna enjoyed watching. She was such a good girl!

Usually two ultrasound tech's perform an ultrasound. I remember the first one looking for Anna's gallbladder, and not being able to find one. In between tech's, I remember Jason saying that maybe that was the problem. We had no idea that with Biliary Atresia the child doesn't usually have a gallbladder. We were looking for a way out, any other explanation than Biliary Atresia, because from what we have heard about it so far, it did not sound like a pleasant disease. The next tech came in, but wasn't in for as long as the first guy. Then we were done. We had to wait for transport and they needed the room, so they kicked us out. There we were, waiting in a hallway. After waiting for a good thirty minutes (yes, just for someone to show us back to our room. Like we couldn't walk up there ourselves), Anna's IV machine started to beep. Not knowing what was going on, we got scared. We didn't know why it was beeping, and no one could explain why. We tried to get someone to help us, they blew us off. They seemed too busy to want to deal with us. Jason got upset, and so did I. We demanded someone come get us, or for them to let us walk upstairs by ourselves. What did they think we would do? Steal our sick child out of the hospital? I don't remember what we ended up happening. I do remember that all it was, was that the IV machine battery was low, and needed to be plugged back into the wall, but how the hell were we supposed to know that. It sounded scary to us, and nobody down there knew what to do about it.

When we got back to the floor, we meat with Dr. Alonso, who did the biopsy. They were able to do it right there at bedside, but Jason and I had to wait out in the hall. It was so quick, but the results wouldn't be in until the next day. More waiting, that is what being in the hospital was all about. I am patient, Jason is not. He hated sitting there waiting, so I told him to go on home and get some rest, "just make sure you come back early in the morning." I hated having talk to the doctors on my own. I always felt like I wouldn't understand what they said, but when it came time to relay the message to Jason I would forget. I wouldn't remember to write down questions. There was so much information to take in, we were so new to this it was very confusing. So, after we saw the docs for night rounds, Jason went back to his parents house. It was nice for Mary to be able to see him. I missed her so much already, but I needed to be there with Anna.

We got neighbors that night. As much as I thought I would hate having neighbors, is as glad as I was right then to have them. I got to talk to the mother about our situation, and our uncertainties, and she told me about themselves. It was a little girl, about two years old. I don't remember what she was in for, but she had been in recovery for a surgery on her kidneys, and was able to move to the floor that night. Poor sweetheart had a ruff night. Although she had a crib, she slept with her mommy on the pull out chair. You could tell these parents were used to being in the hospital stays. That was going to be me, I thought. Always in and out of the hospital, this place was to be our second home. More knots in my stomach. I prayed to God that the biopsy would show all was well and Anna would be sent home with a clean bill of health. God, please help her, I prayed, heal her, make her better.

Next week for Monday Memories: The results are in, and Anna's Kasai.

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Saturday, January 21, 2006

Happy Birthday Daddy!

Today is Jason's birthday, and just in time for it we got a nice huge snow fall! Jason loves the snow, I hate it. I went to Jewel last night and had to scrap off my car. It was snowing so hard that while only being in the store for 30 minutes, or less maybe, I had to scrap the snow off my car again! I am too lazy to get a really good picture outside, so I just took one out the doorway this morning.



It's too bad Jason has to work today, or he would probably take the girls out to play in this. That means I'll have to do it. Did I mention that I don't like snow? Later tonight we will celebrate Jason's birthday by going out to eat, then we will go to his parents house to eat cheesecake. Speaking of cheesecake, Mary had an eye doctor appointment yesterday. She has been complaining of blurring when she reads. We discovered that she is far sided, and she will need glasses for reading. Not a big deal except I will have to trust her to take them on and off all the time and not loose them. I told her we would buy a special case for her. She is happy to get glasses, as I was when I was young. I know that won't last, it comes to be a hassle. Maybe I should get Anna's vision checked as well. The whole side of my family, well most of them, wear glasses. Jason's mom and dad do, both have to wear bifocals. I wear glasses, Jason did, but hasn't since he lost his last pair. Ok got off the subject a little. So, what does this have to do with cheesecake? Anyway, since it took a while at the eye doctor I didn't bother to try to rush to get Mary back to school after lunch time, so I let her ditch the rest of the school day and we headed to Woodfeild mall to the cheesecake factory to get Jason a cheesecake for his birthday, his favorite! 45 dollars for a 10 inch fresh strawberry cheesecake! He's lucky we love him, Jason's parents and I split the bill. Mary and I went to lunch, and looked around in the mall for a little while. This place is huge, and I try to avoid going there too much because there is a lot of walking involved. I know, I sound lazy. You shouldn't go to the mall without money anyway, it just reminds me of what I want that I can't have!

My friend Jessie is also in town for a visit this weekend. She got in Thursday night and spent the night. We grew up down the street from each other, but didn't become friends until her sophomore year, and my freshman year in high school. Then, before Anna was born, she upped and moved to Seattle. It was sad, Mary was really attached to her. She comes and visits about once a year, it used to be more often but the longer she is gone, the less often she comes. We haven't taken any pictures with her yet, but we will get to that Sunday. We will meet up for lunch along with some other old highschool friends. McDonald's playland is were we are going for lunch, that way the kids can ply, and we can all catch up. I will try to remember to bring my camera along!

Sunday, January 15, 2006

Monday Memories: Anna's diagnoses

Monday Memories: Did I ever tell you about The day Anna was diagnosed with Biliary Atresia

These are not happy memories, but very much part of our life. I think I will continue each week as I look back on my memories of Anna's days with this disease, as well as her transplant before and after. I have never written it down, so now is the time!

Anna's pediatrician called with Anna's blood test results. It was 7 o'clock in the evening on a Sunday night. I was very surprised to here from the doctor at this time of the night on a Sunday, because he told me to not expect a call until the mid afternoon on Monday. There was great concern in his voice. I remember him saying that Anna's bilirubin was still high (with this being the third blood test since she was born) At this point Anna was 7 weeks old. He wanted us to come in first thing in the morning so that he could give us a referral to a specialist. "There are a few options", he said. He gave us a few names, but highly recommended Dr. Whitington at Children's Memorial. On his referral paper I saw the words Biliary Atresia, and blocked bile ducts. I could still see the green lab order type paper. Holding it in my hand, clenching it very tight so that I didn't loose it for fear of going to Children's without it and them telling me to come back with a new order before the doctor would see me. I couldn't even pronounce the words Biliary Atresia. We got an apt. The very next day to see Dr. Whitington at Children's. Jason stressed the fact that he needed to get the day off of work to come with me, while I didn't think it would be necessary. How bad could it be? Some medicine to unblock her bile ducts and she would be fine! Jason was a lot more worried than I was. I always thought that he overreacted when Mary was sick or hurt, and this was what he was doing. I was glad to hear he was able to get the day off anyway, I don't like driving downtown by myself, I thought. We arranged for my neighbor to watch Mary that day since Jason's parents didn't live close to us at the time. As we drove down to the hospital I got to thinking a little more. This must be something that requires more than just medicine, or my pediatrician would have given it to me, right? I started feeling the knots in my stomach, I started to get nervous about what we would hear that day.

We were called into a room not too long after arriving. First we saw Brian, one of the liver nurse/practitioners. He was great to talk to, and adored Anna. He asked too many questions, a lot that I couldn't answer. He asked questions about the color of her urine, her sleeping habits, her mood...but when he asked about the color of her stool, if it had been light, that's when I knew that they had an idea about what was going on with her. Then a couple more people came in and asked just about the same questions we had already answered. I was getting annoyed at that point, why do we have to answer the same questions over and over again? How many people have to touch her, feel on her belly before an actual doctor came in to talk to us? Finally, after 2 nurses and an intern, Dr. Whitington came in. A pleasant smile on his face was very reassuring to me. I thought all was well, we got all worked up over nothing. Then, he dropped the bomb on us. He told us he was sure it was Biliary Atresia, that if we ran into him anywhere else he would have stopped us. He proceeded to tell us about this disease, and what would come to follow. He explained the Kasai procedure to us, and drew a diagram of what they would do in this surgery. He told us that this procedure doesn't always work, and that she would eventually need a liver transplant. Before any of this Anna was to be admitted to the hospital for a biopsy to confirm his suspicion. It didn't all click with me right away. When the doctor left the room I looked at Jason and saw the fear in his eyes, then we both cried. Brian walked into the room to let us know that our bed would take a couple of hours. We had the option to stay and wait for a bed, or to go home to gather some things, and come back later that day. He must have seen parents like us before because it didn't seem to faze him that we were upset. We told him we needed a minute to talk. He understood.

After he left Jason and I pulled ourselves together and talked about what we should do. We then remembered that Mary was with my neighbor, but couldn't stay there for a couple nights, or however long we would be at the hospital for. We needed to go home and gather some things for all of us, make some phone calls for Mary's school and Jason's work. We had to ask Jason's parents to watch Mary for us, and for, we didn't know how long. As we walked into the lobby on our way out of the hospital at Children's, Jason decided that he had better call work to let them know he wouldn't be there for the rest of today. As he was talking on the phone all terry eyed, I was sitting in the lobby, terry eyed, worried about every one looking at me. I have never liked people seeing me cry. Again, I thought, this place must see a lot of this. The car ride home was very silent, as we were in shock from what we had just had to take in. I sat in the back seat holding Anna's hand, as Jason drove. She was sleeping, and she seemed fine. Was she really as sick as the doctors think? She looked so peaceful, and beautiful.

As we came closer to home, I started to worry about what we were going to tell Mary. At the time she was only 4 years old. How do we explain this to a 4 year old when we didn't even understand it ourselves? How would she react? How would we tell her that her new baby sister and Mommy and Daddy would be torn away from her, but we didn't know for how long. That she wouldn't be able to go to school because she had to stay at her grandparents house. This was going to be hard. As we pulled up to the house Mary was playing outside with some neighbors. So pretty with her long thick hair, she looked so happy and we were about to chatter her perfect world. We brought her upstairs after a brief explanation of the situation to our neighbors. All we told her was that her baby sister was sick, and she had to go to the hospital for a little while. She was very grown up about the whole thing, I know she wasn't happy about having to miss school, but she loved to go visit her Gama and Papa! Of course, we didn't have to worry about my in-laws saying no to watching Mary, they were always ready and whiling, but we did have to explain the situation with them as well. They had a lot of questions that we couldn't answer because we didn't know the answers. Luckily, Brian gave us a some pamphlets to hand out and those came in handy. When we arrived at Jason's parents house with Mary and Anna, we couldn't stay long, we had to get Anna back to the hospital. We let Gama, who was the only on home at the time, read the pamphlet. Her face turned white, she cried, gave us hugs and kissed and held Anna for a little bit before we went on our way. Then, we were on our way.....

Here are a couple pictures of Anna before she was diagnosed:



To be continued, next week....Anna's admittance, and biopsy.
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