Harmonee Lynn: Day 4

Saturday, April 17, 2010

Day 4

I came home yesterday to be with Layla since I haven't been able to be with her much lately. I miss Harmonee though. It is hard to leave her at the hospital alone while waiting for Brandon to be able to go up and be with her. I don't want her to feel lonely or scared. But I made sure that she had nurses that she knows and loves, that know and love her as well and I know that I can trust.

Not much has changed since I left yesterday. Her weight has dropped once again, the doctors say that is more then likely from her tap, not being able to eat and wtih taking even what little fluid they did. This morning her blood count came back low, so tonight they are giving her a blood transfusion in order to help protect her liver. She slept good last night, for the first time in a few days, and has had a good day with the nurses today!

Hurry up and wait. I hear that a lot. I haven't really had much time to think about Brandon leaving for deployment until the past few days. Brandon will be leaving in just a few months, starting the 18 months he will have to stay away with A.T, training, and deployment. But of course this is another ''maybe''. Orders keep changing. They are going, they aren't, they are.

I began to wonder last night, what happened to the predicatable lifestyle everyone use to fall into. You knew where your kids were, what you would be doing that weekend. With your babies living up to the normal expectations that you always had of them, crawling, walking... living. To know your husband would be home this week (end), month, or even this year. Planning around maybe's and making plans with the knowledge of quick change at any moment, gets old after a while.

Of course I am not complaining, just wondering really. I do love my life. My girls, my husband, my friends, liver moms, and the nurses that take care of Harmonee. And I wouldn't change anything about it. Of course, as all parents would, I would take Harmonee's pain away and give her a new soft pink liver, and bring her home to be a happy healthy little girl. But I cant, and the hope that soon the call will come doesn't die. This is just how it is suppose to be right now. What ever her story is, however it ends, whatever her story will tell or the lessons it will bring, it will be worth it. We just have to hurry up and wait.

I can normally deal with my husband being overseas, fighting for his country and what he believes for a year. But with the thought that he might miss Harmonee's transplant haunts us constantly. Once he is gone, the only way to get him home for her transplant when he is overseas or at A.T is to call the Red Cross, who will call a life flight to go get him, and bring him home. This could take a week or more, and he will miss her transplant. I can't imagine how he must feel knowing he will miss his baby girls transplant if the call does not come while he is home. We just have to hurry up and wait to see what happens.

Of course while he is gone we will have sweet Layla. She fits in perfectly to this whole crazy combo I call "my life". She is my relaxation, my sigh of relief each day in her healthy little body, with the way she looks at Harmonee with understanding. She knows that my place right now is to be with Harmonee even though it means being away from her. When we are home she doesn't miss a beat being filled with hugs, kisses and cuddles when Harmonee isn't feeling her best. Each week she "hurry up and waits" for us to come home.

So I guess it is true. You just have to hurry up and wait. Weather it is Harmonee hurrying to gain the weight and grow so she will be a better candidate for a liver. Layla being ready for us to come home and be a family, and then leave again at any time to another long stay at the hospital. Or Brandon hurrying to get things done so he can be home or at the hospital as much as possible before he officially leaves so if the call does come he can be there give his little angel to the surgeons, and to hold Layla during the long wait. Hurry up and wait? I can hurry... but do I have to wait?

I have to keep reminding myself of the patience I have learned the past few months. It is the hardest thing in the world to have patience with such things, and some days it feels almost impossible. But I can't tell you how thankful I am to my friends, family, other liver moms, and nurses that help me through all of this. There is an end. I just have to have patience to hurry up and wait.

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What is Biliary Atresia {BA}

Biliary Atresia is a rare liver disease that only affects infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats.
In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver.

What causes BA:
The cause of this disease is not known. In some infants, the condition is most likely congenital, meaning present from birth. About one in 10 babies with biliary atresia have other congenital defects. Some research indicates that an early viral infection may be linked to biliary atresia.
Scientists do know that biliary atresia is not hereditary; parents do not pass it on to their child. It is also not contagious, and it is not preventable. It is also not caused by anything an expectant mother did or did not do.

How is BA diagnosed:
Since other conditions lead to symptoms similar to those of biliary atresia, doctors must perform many tests before a conclusive diagnosis can be made. These tests may include blood and liver tests, an ultrasound examination, X-rays and a liver biopsy, in which a small amount of liver tissue is removed with a needle for examination in a laboratory.

How is BA treated:
Unfortunately, there is no cure for biliary atresia. The only treatment is a surgical procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby’s own intestine, which acts as a new duct. This surgery is called the Kasai procedure after Dr. Morio Kasai, the Japanese surgeon who developed it.
The aim of the Kasai procedure is to allow drainage of bile from the liver into the intestine through the new duct. The operation is completely or partially successful about 80 percent of the time if performed early (before 3 months of age). In babies who respond well, jaundice and other symptoms usually disappear after several weeks.
In cases where the Kasai procedure does not work, the problem often lies in the fact that blocked bile ducts are “intrahepatic,” or inside the liver, as well as extrahepatic, or outside the liver. No procedure, except for liver transplant, has been developed to replace blocked intrahepatic ducts.
The Kasai procedure is most successful in babies younger than 3-months-old, so early diagnosis is important.
If the Kasai procedure is not successful, the only other option is a liver transplant. However, a suitable donor organ must be found quickly, before damage to the liver from the backed-up bile becomes deadly.

Babies with BA:
Without successful treatment, few children with biliary atresia live beyond age two. In some cases, where the Kasai procedure is completely successful, the child may recover and live a normal life. However, in most cases, even when surgery is successful, patients will suffer gradual damage to the liver. These children will need specialized medical care throughout their lives, and many will ultimately need a liver transplant.

Transplant:
In children with biliary atresia, a liver transplant is generally not attempted unless the Kasai procedure has been tried. In cases where that operation is unsuccessful, the child may become a candidate for a liver transplant. Success depends on the timely availability of a matching donor liver. Fortunately, survival rates for liver transplant recipients have increased dramatically with improved surgical techniques and the development of drugs that help overcome the problem of organ rejection.

What does YOUR liver do for you?

How important is the liver?
The liver is a vital organ. Without it we would not be able to live. Apart from the brain, it is the most complex organ in the body. It has a wide range of functions and acts very much like a factory. One of its most amazing features is its regenerative power. Some 9/10ths of the liver can be cut away and provided the remaining 1/10th is healthy, the liver will grow back to its original size.

The liver is a processor
The food that we eat passes into the stomach via the esophagus (gullet). The food is broken down by the action of the stomach and the small intestine. The nutrients from the food are then absorbed into the blood via the vessels in the walls of the intestines. These drain to veins which lead into the portal vein which carries the blood into the liver. The nutrients are processed in many different ways in the liver. This processing of the food is known as metabolism. The final products made are used by the body for energy and growth.

The liver is a manufacturer
The liver produces a number of different substances which are vital in order for healthy growth and development. For example: 1. The liver cells produce substances which assist with the clotting of the blood, e.g.Prothrombin. 2. The liver cells make proteins which are carried in the blood. These have many functions. Albumin, for example, helps to control the distribution of fluid in all parts of the body and transports many substances to and from the liver and kidneys to other parts of the body.

The liver is a storage depot
The liver stores energy in the form of glycogen (sugar). It also stores a number of other substances, e.g. copper, iron and vitamins.

The liver is a controller
The liver plays an important part in controlling: 1. The correct level of many hormones within the body. 2. The blood sugar (glucose) levels. The liver stores glucose in the form of glycogen when there is too much glucose in the blood and releases it when the blood sugar level falls. 3. The amount of fluid the body retains and its distribution throughout the body. 4. The concentration of cholesterol which it converts into bile salts. 5. The action of many drugs

The liver is a filter
The liver removes many unwanted substances from the body. It plays an important role in controlling the harmful effects of some drugs and products of metabolism by changing them chemically before excreting them into the bile. Bilirubin (unconjugated or indirect) is produced when old red blood cells break down. The average life of a healthy red blood cell is 120 days. This bilirubin is carried in the blood stream, attached to albuimin, to the liver where it is altered into a different form (conjugated or direct bilirubin) which is then: 1. Excreted in the bile. 2. Transferred into the bile which passes via the bile ducts into the intestine and appears as brown pigment in the stool. Bile is continuously produced by the liver cells mainly by the action of bile salts. It collects in and passes out through the network of bile ducts into the intestine. Bile salts play an important role in the digestion of fats.

The liver is a defender
The liver plays an important role in fighting many types of infection. In particular, protects the body against infection which arises in the gut. With so many different and complex functions, it is not surprising that more than 100 types of liver diseases have been identified in babies and children

Harmonee's Story

My name is Harmonee Lynn Phillips. I was born October 8, 2009, I am 3 months old. When I was 2 months 1 week and 4 days old my doctor realized that something was wrong. Mommy asked the doctor why I was still yellow at my 2 month appointment on Dec. 18, 2009, we all thought I just had jaundice. But jaundice doesn’t last this long. Dr. Lloyd {my pediatric doctor} told mommy to take me to the hospital to get my blood checked. At the hospital mommy held me while my heel was pricked and the nurse took all the tubes of blood she needed for testing. After, mommy and I went home to wait for results. Layla {my big sister} and I were playing on the couch when mommy’s phone rang. I knew something was wrong when I saw mommy’s streak with tears and her voice catch as she talked into the phone. She knelt next to me and dialed my daddy’s number. She told me things were going to be okay, she would take care of me… she promised. I heard my daddy’s voice on the other end of the phone and I heard mommy repeat what the person on the phone had told her. "The results came for Harmonee's blood tests. Lloyd says it has something to do with her liver, but it’s not jaundice. He called Primary Children’s and someone from the GI clinic is going to call and set up an appointment." I didn’t want mommy to be sad, so I smiled at her to let her know I was okay, nothing was wrong. Mommy smiled back, and told me not to look so concerned. Layla gave mommy hugs and kisses, then gave me kisses after. Everything was okay. About an hour later mommy got another call. My appointment was set for Monday, Dec. 21, 2009.

The weekend was long and hard, wondering how serious and what was going to be said at my appointment Monday morning. Mommy woke me up early that morning, she gave me a warm bath, made me a bottle to eat, put me in my snow suit, buckled me into my car seat and put me in the car. I slept on the way to Primary Children’s and woke up in a waiting room, mommy was filling out papers, then she held me until my name was called. The nurse was nice; she smiled at me and talked to me, than she put warm jelly on my tummy after mommy took my clothes off. She put a thing on my tummy and spread the jelly around, I could see images on a computer above my head. I heard the nice nurse tell mommy it was pictures of all the organs and things inside my tummy. After about 20 minutes the nurse told mommy she was going to go get a doctor to 'read' the ultrasounds. He was a nice doctor, a heavier man with a beard, he talked to me too, said I was cute when I smiled at him. He looked through all the pictures, but stopped on a certain one, studied it and sat down. He took a deep breath and talked to the nurse for a minute before looking at mommy, he told her it was a picture was of my liver, the tissues were not all the same, they couldn't see a gal bladder, or any ducts but the GI doctor would explain more about what they had found. Mommy looked concerned, I started to wiggle and whine hoping mommy would be able to pick me up, hold me and let me tell her everything was okay. But she had to put me back in my car seat, and we went to the 2nd floor to the GI center to meet my next doctor. Mommy went to the lady at the desk, told her my name and signed me in, now mommy was able to hold me until my name was called. We went into a back room to wait for the doctor. Another nice doctor came to meet me, her name was Dr. Book. She asked mommy some thing’s about me and left again. We waited for 2 more hours. It was about 12:00 noon when Dr. Book came back in, she pulled a chair up to my mommy and showed her a picture. Dr. Book explained that they couldn’t see any of my main bile ducts or gal bladder; there were some tests that needed to be done before they knew exactly what was wrong with me. Because I was 2 months old and these types of things were suppose to be taken care of before I was 3 months, the tests were put on STAT. Dr. Book had made arrangements for me to have a liver biopsy that night at 4:00 P.M. I would stay the night in the hospital and she would come to my room the next morning to tell mommy the results of the biopsy. To prepare for the biopsy mommy had to take me to get more tests. We went to the ER first were the nurse put a catheter in me to get a clean catch urine specimen. Then I was taken to the Lab. Here they took more blood, and put an IV in my right hand. Then we were able to go to my room and wait for my biopsy.

Mommy and I arrived at room 4343, POD D, on the 4th floor of Primary Children’s at 3:00 P.M. Dec. 21. Mommy rocked with me in her arms until the time came that I had to go to general surgery for my biopsy. The nurses laid me in my crib and took me down the hall to the elevators that went to the 2nd floor with mommy next to me. She stayed with me as long as she could, until Dr. Book told her she had to leave. I wanted my mommy to stay. Before mommy left me she told me that she would be there with me, no matter what happened, she would see me when I woke up and she loved me... she promised. Mommy was there an hour later to meet me in my room, she was the first one I saw when I woke up, I wanted mommy to hold me. But they wouldn’t let her for a few more hours. When mommy was finally able to hold me, she held me all night, she slept in the rocking chair with me in her arms, and held me until the next morning when Dr. Book came in to tell mommy what they had found out through the biopsy. Little did we all know the next few minutes would change our lives… Dr. Book sat in front of my mom, she looked concerned, she had more pictures, putting her hand on mommy’s knee she told her the news… I was diagnosed with BILIARY ATRESIA Tuesday, Dec. 22, 2009. I was 2 months 2 weeks old.

Dr. Book, made surgery plans for the next day Dec. 23, 2009, Dr. Scaif would be my surgeon. I wasn't allowed to eat for at least 8 hours before I went into surgery. My last bit of formula was eaten at 3 a.m. that morning, and I drank my last few ounces of pedialyte at 8 a.m. My surgery was set up for 1:30 p.m. Daddy came to see me before my surgery, I was so happy to see him! At 1 p.m. mommy was told that general surgery was running behind, it would be at least two more hours. Finally, at 3 p.m. after hours of not having anything to eat, they took me back to the 2nd floor where Dr. Scaif would perform my Kasai. The surgery would last 4 and a half hours. I went into surgery at 4 p.m. and finally at 8:30 p.m. daddy and mommy were called to come to the PICU where they would have to, agian, wait to see me. At 9:30 p.m. my daddy and mommy were brought to me, room 14 in the PICU. I wasn't awake but I could feel my daddys hand. I had tubes in my nose and mouth, a catheter, a heart monitor on my foot, IV's in each of my hands and another one on my foot. After a few hours daddy had to go home, but mommy stayed at the hosptial that night in a 'parent stay' room. In the morning she came to sit with me, and talk to me. About 11:00 a.m. that morning I was taken to X-RAY on the 1st floor to receive my PICC line. Mommy wasn't able to stay, but she promised to meet me back at my room in the PICU when I was done. To put the PICC line in they had to sedate me. Today was Christmas Eve.

On Christmas day, I woke up to presents from Santa, who had left them on a chair in my room the night before. Mommy opened them for me when she came to my room that morning and showed me what each gift was. That day I was also lucky enough to get my mouth tube removed. I wasn't able to make any noise, but a scratchy whisper for a few more hours, but I was happy to have it out. Today I also left the PICU to my newest room, this time I would be on the 3rd floor, on the IMSU {Infant Medical Surgical Unit}, room 3311. This room was smaller, but mommy was able to stay in there with me on a small pull out bed. That day, Daddy brought Layla to see me, and to open Christmas presents. It turned out to be a great Christmas. On the Dec. 26, my CBC came back low, at 11 a.m. I was given my first blood transfusion. My nose tube was also taken out today and I was put on oxygen. That night my heart rate dropped to 50, and my respirations to 10. On Dec. 27, 2009, my heart rate dropped to below 10. The nurses called the cardiologist who came to my room and put a ‘jacket’ on me to help monitor my heart. But today, I was also allowed to eat 1ml of pedialite every 3 hours. What a tease. On Dec. 28, 2009 I was moved to room 3387, on the 3rd floor in the CSU {Children’s Surgical Unit} because my heart rate kept dropping to an almost stopping position. In this unit they would be able to watch my heart closer. Throughout the week my heart was monitored, on Dec. 29th, 2009 an Echogram was ordered, unfortunately, after packing my IV's up and taking me to the 1st floor to the Heart department, they were unable to pick up the image of my heart because of my bandages. I was slowly being taken off my morphine and my meds that I would have to take home were being added to my diet. On Dec. 30, 2009, Dr. Scaif gave permission for me to start eating 1 ounce of formula every three hours. I was doing good with that and on Dec. 31, 2009 I was allowed to finally eat as much as I wanted whenever I wanted. My tummy was also measured and it was 53 cm. That night, daddy and Layla came to see me again, we had a good New Years together. Daddy held me, and we watched movies in my room. It was good to see them again.

On January 1st 2010, Dr. Scaif told daddy {who was staying with me over the weekend while mommy went home to spend time with sister} that I could start preparing to go home. On the morning of January 2nd 2010, it didn't seem that I would be going home that day. My jaundice count was higher than the day before and my stool was lighter then what it was suppose to be. After hours of waiting Dr. Scaif still gave me the go ahead, everything was prepared for me to leave the hospital. Mommy and Layla came and helped daddy get all my stuff packed and loaded into the car. I was finally going home!