Yeah!!! Were Home

They discharged Katie today. We had to stay an extra day because Katie got a fever Friday night. They did labs, an x-ray, and blood cultures and everything came back clear so we finally got to come home on Sunday. Katie was so happy. She finally got her coffee from Starbucks. She did so great and we are really glad to be home. Thanks to everyone who helped during our stay and thanks to everyone that prayed and thought about us. It made a huge difference.

Update for morning of 9/19/09

Katie kept all her food down last night. She did get a fever of 101.9 around 11 pm, but with some Tylenol it went away. The doctors were a little concerned because they didn't know what caused the fever, so it looks like she will be in at least the rest of today. They also clamped the NG-tube and if she does not throw up anymore they will remove it. Papa came up to see her last night and it made her day. He brought her a rainbow slinky and let her play with his laser pointer. She kept shooting at the nurse and tech. Hopefully the fever doesn't come back today and she gets to come home tonight.

Update for Friday 9/18/09

Yeah!!!! We are finally out of ICU. Katie slept most of the night(Thursday night). She would wake up every 2 hours saying her stomach hurt and they would get the morphine. It worked almosted immediately all but one time. They had to add a little tylenol that time. She slept most of the day too. Around 2 pm they let her have clear liquids. She drank a juice box but threw it back up. She was able to try again around 5 pm and she kept it down. They moved us to a general pediatrics floor at 6 pm. We are now in room B4-310. When we got down here, they put her on a regular diet and she was able to eat yogurt, strawberries, and eggs. Hopefully, it all stays down. Through out the day they have taking out one IV line, a foley catheter, and all her monitoring patches. If she keeps all the food down tonight they will remove the NG-tube in the morning. Thank you again for all the thoughts and prayers.

Update on Katie's Surgery

Katie did great in her surgery. We were admitted last night around 6pm. They put in an IV to give her IV antibiotics and gave her a Hibicleanse bath to get her extra clean. We finally passed out around 11:30 pm but were up again at 5:30 am for another bath. We had to wait to go to surgery until 1:30pm because an ICU trauma patient needed to get the same procedure done first. Katie's surgery started about 2:24 pm and was done before 3:30 pm. Everything went really well. The doctor said that she blocked off the arteries to about 2/3 of Katie's spleen. After surgery, they took Katie to recovery until about 6:15 pm. We finally got up to ICU around 6:30 pm. She is in room C12-256 for now. Hopefully, everything keeps going well and she will be transferred to a general pediatrics floor within 24 hours. I will send out more updates as I can. Thanks for all the thoughts and prayers.

Katie did great at the CT

Katie was so awesome today for the CT. She did such a good job when the nurse was putting in the IV that they thought she could do the CT without sedation. Leah was able to stay with her during the CT. Katie didn't even cry once. What a big girl!!!

Katie's Question

Katie told Leah her tummy hurt and Leah told her that she was sorry. Then Katie asked Leah, "Why did Andrew die?" Leah said, "Because he was sick." Then Katie said, "I know, but why did he go to God?" So Leah said, "He had a disease called Niemann-pick and his body stopped working." Leah then asked her, "Why did you want to know?" Katie said, "She just wanted to know what happened."

Surgery set for Thursday September 17th

We spoke with Katie's Palliative Care doctor today. We have scheduled a CT with contrast of Katie's belly for Tuesday, Sept. 8th. The are doing it so they can map the blood flow to the spleen. We also checked with her pediatrician and found out that Katie already had the Pneumovax vaccine. The plan right now is for Katie to be admitted Wednesday, Sept. 16th. They want to do a betadine scrub of her body and start her on IV antibiotics. The procedure will be done in radiology with guided CT. We were also able to speak with the radiologist which will do the procedure. She said the material that they use, to clot the arteries leading to the spleen, are made out of the same material as contact lenses. This was something I was worried about, because when they said it was a coil, I had imagined a piece of metal. She said the procedure should last 2-4 hrs. Katie will be completely out under general anesthesia. She will be intubated(breathing tube) during the procedure and afterward the procedure until her pain is under control. She will go straight to ICU and will stay until the pain is under control and the tube is taken out. Please keep us in your thoughts and prayers.

We need your prayers.

We need everyone's prayers. We are meeting today with Katie's Palliative Care doctor to discuss the partial splenic embolyzation procedure. Right now they are saying that Katie needs the Pnemococcal vacine, at lease a week before the procedure; and a CT with contrast to map the blood flow to the spleen. They said that they will want to admit her the day before the procedure to do a full body scrub and IV antibiotics and that afterwards she will go to ICU for observation. They also said earlier that she could get to go home the same day, but that was before they decided to admit her. Please pray for us and the doctors to make the best decisions for Katie and to guide their hands during any procedures and for a fast recovery for Katie.