Robin (Missouri)

Robin was born 4 weeks early and came into this world not breathing. She was born with jaundice and put on the bili lights for 7 days. They checked her bili and said she would be fine. So as the months went on Robin was doing fine we thought. But. When I took Robin in for her 4 months shots, the health nurse looked at me and said ‘”Have you noticed that Robin’s eyes are yellow?” I stated yes but the doctor didn’t think it was a big deal. The nurse told me to immediately call my doctor and get Robin in because this was not normal. So, I did, I called the doctor and got her in the same day. I won’t ever forget that day, as the doctor walked into the exam room and looked at Robin and looked up at me and said, “I will be right back”, that moment he was out of the room seem like eternity, the doctor came back in and hand me a business card, and he said,” I called and got Robin an appointment with this pediatric specialist for tomorrow, she will be consulting you about Robin. Ok, now I’m scared, here I am all by myself as my husband has gone back to Missouri from Colorado Springs for a funeral of his grandpa. I went to the specialist the next morning, not knowing what to expect. She came in to the room and looked at Robin and asked me,” how long has Robin been yellow and her eyes how long has that been going on, I told her Robin was born with jaundice and they out her on bili lights for 7 days and they said she was fine, and we really didn’t’ t noticed her skin being yellow as we all have olive color skin anyway, and I couldn’t tell you how long her eyes have been this way, all I know is when I took her in for her 4 months shots the nurse said they were yellow.

Then the next words that came out of the doctors mouth still to this day echoes in my head. She said, “I believe Robin is in liver failure, her liver is quite enlarged to touch and so is her spleen. She stated she wanted to do a lot of blood work on her and an ultrasound also.” Then she said that she would be calling a hospital G. I. group for Robin to go see them also.” So, the whirlwind began that day Feb. 14, 2002. Well we got the 1st set of labs back and all her LFT’s were in the 1000’s and her bili was 15. Not a good sign the doctor said, so she got us in the following week. Thank goodness my husband was back home from Missouri for this day. We were put into the hospital and they started all these test, blood work, ultrasounds, liver biopsy, you name it they were doing it. Then the Doctor came in and the look on his face was horrible. We asked what was wrong with our baby girl, and he said,” I hate to tell you this but Robin needs a liver transplant to survive and she needs it before she turns a year old, or she won’t make it.” Right then I felt my world crushing down upon us. What my baby needs a what a liver transplant, why? Then the Doctor said “we think she has Biliary Atesia, but we are not for sure on that.” So, the process began, Robin went through all these test and then we met with the liver transplant team in for them to place her on the list. Well life was at a standstill, my head was hurting, my heart was breaking, all I knew was I didn’t want to lose my baby girl. Then they took Robin into surgery to place a Brovaic line, so that they wouldn’t have to keep poking her and they could also administer medication through the line. Ok, how long we asked how long she will have to wait for a liver, can we donate our liver, and what can we do. We were told live donation was out of the question and they couldn’t tell us how long we would wait. Ok, the medicine regiment started then they put her on TPN because she wasn’t thriving, they also put an ng tube down and started ng feedings also. All, I can see is my precious tiny baby of 4months hooked up to all this equipment and tubes running in her and this wasn’t right. Well, to shorten this a little we brought Robin to a different Children’s hospital for a 2nd opinion and were told the same thing; Robin needed a liver transplant to survive. So, we were told because of robin being 4 months old that there was nothing more they could do but treat her with medication and TPN. So the wait started. All I can say was many doctor visits and hospital stays were in our future. We waited 9 ½ months before we received the call and then we were off to the hospital. Well, they took Robin at 9 am on the 10th of Dec, 2002 and began the surgery. When they were done the surgeon came out and said that they were only able to give her the left lateral lobe of the liver because she was so small, Robin was 14 months old and only weighed 12lbs and was only 24 inches long. Well ok how is she and he said she was doing well and we would see her in a little bit when they got her to the PICU.

Ok, I am going to skip all the trauma we have gone through since the transplant and just say this , Robin went into immediate rejection and we felt that our transplant center at that time wasn’t doing what they need to do , to keep Robin alive, they were just maintain her so she wouldn’t suffer, so they say. Well, I wouldn’t let my baby die cause they didn’t want to admit they made a mistake, so I took things in my hands and called the transplant team we had gotten the second opinion from back in November, and begged them to take Robin on or she was going to die, and I explained everything to them, and they said if I could get her Doctor to sign off on the transfer they would take her. So, I started in on her doctor and by this time we had already been in the hospital for 6 weeks and 21 days in PICU. The doctor finally gave in and said that he would talk with the second transplant center and see what they say and if they agree he would release Robin to be transferred to this center. Well this was Feb 26, 2002 and all I could see was my baby dying before me and I wanted to give her a chance of life, as this is what they told us would happen after her transplant, but things were going wrong and she wasn’t responding to anything. Well we got the ok from the second transplant team and we packed up all the medical equipment and supplies and our neighbors packed up our house and they helped us move. On March 3, 2002 we were admitted into Children’s Hospital and Robin was in PICU and they told us that the liver wasn’t functioning and that she was really ill and tiny. They stated they would do what they could to get her to become stronger so we could re-transplant her again. What another transplant why, because the left lateral lobe isn’t working in Robin and without another transplant she won’t make it. But, we have to get her stronger, before we could even re-transplant her. So, this journey began again, more medicine and IV’s, hospital stays, ECT. Robin only weighed 10 pounds now after her 1st transplant and wasn’t responding. But, I want to say the staff at Children’s Hospital never ever gave up and 22 months after we transferred to Children’s Mercy and lots of hospital stays and medicine changes and IV therapy, Robin was getting stronger she now weighed in at 18 pounds and the doctors feel she was strong enough to endure another transplant. Ok here we go again, they re-listed Robin August 30, 2004 and on Sept. 28, 2004 Robin received her 2nd liver transplant and what a difference, Robin received a split liver but the nurse came out and said” the liver is working well, bile is flowing.” So, Robin made it into PICU and within an hour of being in PICU she was awake and they removed the breathing tube and she was sitting up. Oh, My I won’t ever forget the moment I saw her after they brought her to PICU, she was WHITE NOT YELLOW. I couldn’t believe that because since she was 4 months old until now she was 23 months old she had always been very yellow green. Well Robin was in PICU only 24 hours and she was up and moving around, so went to the floor 4 Sutherland. Robin was thriving, she was still on the ng tube and IV meds but she was thriving. We only spent 10 days total in the hospital when we got to come home. We went almost 5 years with perfect liver numbers and her thriving, when June 2009 Robin woke up yellow. She ended up in the hospital and they did a biopsy and labs and found out that she had a rare rejection that started as they had lowered her prograf level to a 1. She ended up with donor specific antibody rejection, we were in the hospital for 6 weeks, going through biopsies, medicine change and iv meds, thymo globulin , IVIG, Iv steroids. Well her numbers today are almost normal. We are still dealing with high elevation of EBV, and her ospteopenia. BUT, she is ALIVE!!! Bottom line if we would of stayed with our first transplant center she wouldn’t be here today.

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