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Kiana’s Story
Site created on May 16, 2008
Keep praying for Kiana.Kiana was born with a serious liver disease called Biliary Atresia. We are now on the waiting list for a liver transplant.
TIME LINE
March 31st- At Kiana’s 2 month doctor appointment Dr. Holshauser told us it would be a good idea if we went the next day to get some bloodwork done. He notices she was still a little yellow and said that was not normal for a baby her age.
April 2nd- Dr. Holshauser called and told me Kiana needed to go to Cardinal Glennon right away. I quickly left work and rushed her to the Cardinal Glennon ER. After her emergency room evaluation she was admitted. We were told her bilirubin level was high. Her level was a 5.4 and babies her age should be between 0.5 and 1.5. She had an ultrasound done on her belly and other various tests done. Dr. Foy, her GI (gastrointestinal) doctor came and told me her condition could either be surgical or medical… He said to hope for the medical.
April 4th- We head to St. Louis University Hospital for her first HIDA scan. St. Louis university Hospital is connected to Cardinal Glennon. A HIDA scan helps evaluate the function of the gallbladder and the bile ducts. In preparation for a HIDA scan, a dye or other chemical is injected into your vein. The tracer travels to your liver and then into the bile ducts. A special scanner placed over your abdomen tracks the movement of the tracer through your biliary tract and makes images of the liver, gallbladder and bile ducts. The HIDA scan takes an hour. Once it is complete the doctors tell us that they will need to do a follow up HIDA scan the next morning to compare pictures.
April 5th- After another sleepless night where Kiana can’t eat we go back to St. Louis University Hospital for another HIDA scan. Once the results come back, they still can’t tell if she has the surgical problem or the medical problem. Next they tell me they are to do a liver biopsy which will give them a better idea of what is going on.
April 7th- The doctors perform a liver biopsy. A liver biopsy is when the physician examines a small piece of tissue from your liver for signs of damage or disease. A special needle is used to remove the tissue from the liver. After this is done they decide to schedule the Kasai procedure for Wednesday, April the 9th. The doctos are still unsure if she has this disease called biliary atresia so first they will perform a cholangiogram to be certain. If the cholangiogram proves that Kiana does have biliary atresia she will have the Kasai done right away while they already have her opened up.
April 9th- A day we will never forget… Kiana’s Kasai… She goes in at about 9:00 in the morning. The doctors first perform a cholangiogram. The intravenous cholangiogram procedure that is used primarily to look at the larger bile ducts within the liver and the bile ducts outside the liver. To do an IVC, an iodine-containing dye is injected intravenously into the blood. The dye is then removed from blood by the liver which excretes it into the bile. The cholangiogram proved that Kiana did have BILIARY ATRESIA and they performed the Kasai procedure right away. To perform the Kasai procedure, surgeons first carefully remove the damaged ducts outside of the liver. They use a small segment of the patient's own intestine to replace the ducts at the spot where bile is expected to drain. This segment not only connects to the liver, but also connects to the rest of the intestine. The Y-shaped passageway formed by the Kasai procedure allows bile to flow from the liver into the intestine. About 6 hours later, the surgeon came out and told us she did in fact have biliary atresia and she was now in recovery. She was quickly moved to the PICU where she was on several pain medications and on a breathing machine for about 2 hours and then she was breathing on her own.
April 11th- Two days after the surgery she was ready to be out of the PICU and return to the regular part of the hospital. She was starting to get better and was finally able to eat. She was now only on Tylenol. She still had several wires, tubes, drains and a catheter in place for her urine output.
April 15th- Kiana was still progressing and had much less wires coming from her. All she has left was the JP drain (Jackson-Pratt drain). A JP drain is a suction drainage device used to pull excess fluid from the body by constant suction. The drain is removed when the excess fluid has stopped draining from the body.
April 22nd- The doctors decide to let Kiana come him with the JP drain. I had to change all the dressings and document how much fluid went into the drain.
May 1st- The doctors remove the JP drain and notice Kiana has lost a few ounces.
May 5th- The doctors decide to re-admit Kiana at Cardinal Glennon because she is not gaining the weight they would like her to be.
May 6th- They keep Kiana on her regular diet but decide to up her feedings to every 2 hours and do a different feeding technique to help with the spit up.
Kiana's wake is on Wednesday night from 4:00-8:00 at Stygar Funeral Home on Mid Rivers next to American Electronics.
Her funeral is on Thursday at 1:00 in the afternoon. Everyone is welcome to attend both even if you never got to meet her.
Thanks everyone and I suppose this will be my last entry... I will be printing out the guestbook and keeping it forever if anyone has anything they would like to say to Kiana.
Also, I want to thank everyone for keeping Kiana and I in your prayers. God Bless you all...
Another thing:
Please make any donations to Biliary Atresia Fund-For-The-Cure. This fund supports scientific research into the prevention, treatment and cure for biliary atresia. All donations to the fund are restricted to research on biliary atresia. You can donate by visiting education/info/biliaryatresia/
