Giddy…..

Giddy is the word that best describes how I have been feeling since I got the call on Tuesday that Finley would not be needing immediate surgery. Giddy. Euphoric. Joyous. I have just held Finley in my arms and gazed into her sweet face and cried happy tears and yelled THANK YOU to God more than once. What an amazing answer to prayer.

AMAZING!!!

The results were inconclusive. Her common bile duct is slightly larger than normal, but not as large as it should be to clearly be a choledochal cyst. So they are just going to continue to watch it. The Nurse said that probably wasn’t entirely the news I was hoping for and I said – it was perfect. I can wait forever if it means Finley doesn’t have to have another surgery. God is revealing himself in the waiting.

Thank you for praying for Finley… we are so blessed by your prayers and I hope you are as blown away as I am by the fruit of those prayers. Wow. Giddy.

My little ladybug Finley...
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6 thoughts on “Giddy…..”

  1. Such wonderful news! Thank you so much for continuing to update your blog. It is great to hear good news and to see new photos : ) What a great Halloween photo of you and your cute little lady bug! : ) May God continue to bless your family!

    Janice, Esther’s aunt

  2. I am the mother of a son that has undergone surgery to remove a choledochal cyst, its almost been a year since it has happened and I had no support from other parents as it is a rare disorder. I just wanted to let you know if you have any questions I am happy to help. I am also happy to share our story with you.

      1. This is really Long and I understand if you dont have time to read it all.
        My son doesn’t have cdh, he was just born with his cyst. It started at about this time last year at 18months. He would wake up screaming and crying in the middle of the night holding his belly saying ouchy; over and over again, until we gave him some tylenol or put him in the tub. We thought maybe he had gas, the flu, or teething. It went on for a few more days then he woke up one night and I brought him to the living room, he threw-up everything he ate that day. Everything. I knew right away something was wrong, I don’t know how, I just felt it in my gut.
        They always say mom knows best. so at 4am we packed him up drove to the nearest hospital which is about 30mins away, we got to the emergency room and waited for 2 hours to have a doctor tell us he had a throat infection. so we went back home, I couldn’t sleep, so I waited until our doctors office opened so I could call and make an appointment. Luckily our Dr. had an opening in a couple hours.
        We took him in and the doctor did her typical exam but had her worried face on when she was pressing his belly.
        Then off we went to get blood work, which as you know is hell, I felt terrible having to hold him still and get poked. The next morning we got a phone call to bring the little guy back to get the results. This is the beginning of me crying. His liver enzymes were high, too high, just a few points below liver failure. His belly distended. That means Hepatitis.
        He hadn’t got his vaccinations against Hep A,B,C yet. It was our fault.
        Those results meant more blood work to test for Hep A-Z , They all came back negative. It was bitter sweet because I started to research everything that could cause his symptoms…all that came up was Cancer. More crying. But we had an URGENT ultrasound booked, so we waited by the phone, and kept thinking any minute they would call to have us come in. 2 days passed he was in more and more pain, maxed out on tylenol and not sleeping. So we called the Ultrasound and xray clininc. a very “lovely” women told us ” I dont care what you say or what the requisition form says, it’s a 2 week wait no exceptions.” Our Angel of a receptionist called 7 different hospitals and ultrasound clinics until she found us one the next afternoon.
        The Ultrasound was hell, the whole time the tech was saying” oh this is not normal, that cant be right” then the radiologist came in and they were both doing it. CANCER for sure I thought. I was positive. what else could it be. we headed home and there was a message on the machine from our doctor asking us to come in at 8am and to make sure we had things packed because we were on our way after we saw her to the next major city to speak with a specialist. I cried, I was sure it was cancer, my baby was sick. The terrible feeling of helplessness.
        We woke up took a family photo and headed to the doctors office with heavy hearts, waiting to hear the news.
        It was a Choledochal cyst, operable if it was a certain type. ( which thankfully it was) I cried tears of joy. He was going to be ok.
        We were sent to the pediatrics ward at the Hospital to meet up with Dr. Golonka (she’s our super hero). we got to the hospital at 11am then more tests. Blood work mostly, another ultrasound too. To determine if he needed to stay or if he was stable enough to come home for a bit until they could figure out a surgery date (as it was right around Christmas). So we waited for the ever elusive results. We needed an MRI too, but he needed to be admitted to do it. We were in limbo Hanging around the paeds ward.
        The tests came back the same time he started to go Jaundice.
        We were admitted…finally at about 9pm that night.
        the cysts was causing a bile back up. Pancreatitis ( which we were told is more painful than dying of pancreatic cancer), Gall stones, liver inflammation. This meant no food or drink. This went against every motherly instinct I had. we waited on the MRI for another day or so, still no food or water.
        The IV was the worst holding him down every time it broke, or moved, or beeped. a week went buy still not allowed to eat or drink and still only on a diet of Saline, and morphine, and tylenol. Morphine also keeps my child wide awake. The nurses were amazing, I have never met a more caring and compassionate bunch of women in my life. Finally An angel nurse talked them into a PICC line and TPN. a catheter that goes into the arteries and doesnt need to be changed, a long term solution. TPN is fats and nutrition so the body gets what it needs to feed its basic operations, and the daily blood tests can be drawn out of it.
        More tests, a haida scan, more waiting for a surgery date. My husband was unemployed, we were hours away from our home, our babe was sick.
        Finally a date, December 22nd. 5.5hours of surgery and a week in PICU for recovery. He did great throughout the surgery and when he came out and we were visiting him as I am sure you know its terrifying, tubes and monitors. he curled in on him self and stopped breathing we were in the room and they had to move him. that was the worst moment of my life. I wish no parent to have to see their child experience so much pain. He was awake for 23 hours after his surgery, morphine was like speed for the little guy. We spent Christmas in the PICU and he pulled out his NG tube when santa showed up.
        But after we got out of the PICU a week after that you would have not known anything had every happened. 6 weeks from the day we took him to our doctor he was a happy normal toddler. You would have never known he was as sick as he was and in as much pain as he was. If it was not for Our Family Doctor, Our Super Hero and our angel nurses it would have been unbearable.
        Its been a year and besides having to take him to the doctor if he throws-up he is a perfect healthy happy toddler.
        I pray for your family.

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