Raylee is doing WELL!

Raylee had a better night then I expected last night. She is not able to eat or drink anything right now and last night she was asking for Cheerio's and Oreo's. She said she wanted to go home. She also wanted to watch a movie so we watched Toy Story 3. Since she slept better than I expected, I too slept better than expected, which is surprising because the PICU is really loud and is doesn't slow down. The PICU closes from 7 to 8 in the am and pm. This is when they have their shift change and they ask all visitors and parents to leave the unit at this time. The nurses assigned to Raylee only had her as a patient, they did not have any other patients--Raylee received extra attention and care from them. The nurses in PICU specialize in critical care. Raylee still has the epidural and receiving meds through the epidural (she will have this for a few days), she is also receiving morphine, Tylenol, Valium, and lots of fluids. She is not able to leave the PICU while she has the Arterial IV (I am not really sure what this thing is called but Raylee cannot move her hand because of it. I will post a picture of it. It is huge...in the picture posted 07/27/11 you can see the entire thing.)The Arterial IV gives the medical staff better access in monitoring her blood pressure. Last night they were able to take her off of oxygen and she is breathing excellent on her own. I am really happy she didn't need to get a colostomy bag. The surgeon said the rectum wall was stretched just like the bladder was. In the next few days Raylee will be able to eat and drink, and her ability to go potty on her own will be monitored. We are hoping the tumor did not cause permanent damage to these areas.
Her surgeon has been wonderful! He keeps saying how sweet she is and wants to keep her comfortable. He said he put her in the PICU because they monitor pain management better than any other unit. Yesterday he came and checked on Raylee several times. One of the times it was late in the evening. For Raylee being his only surgery for the day I would have thought he would have gone home earlier, but he must have worked a 12 hour day.
Jerry and I will take turns with Raylee and Jorja duing the next week while Raylee is in the hospital. Jorja is a really good kid. She has nights when she struggles with Raylee being gone and worries about her. Having her work with one of the Child Life Specialists has really helped her. When Raylee is in the hospital we make sure Jorja visits her sister every day. They have parent sleep rooms and shower rooms in the PICU but we are happy we can shower at home since we live close enough. Only one parent is allowed to stay in the room with the child. There are parents here from all over the US even some from other countries and one is with the child and the other in one of the sleep rooms. I can't tell you enough how grateful I am to live close to this hospital.
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Raylee's oncologist came to see her today and was really happy the surgery went well. She said she was really worried about it and had to come see Raylee first thing this morning. She said she was out of the hospital yesterday but the surgeon called her and she just couldn't wait to tell us how happy she was. She said it takes Pathology about 1 week to have the final results about the tumor. They looked at frozen samples from the surgery and said they couldn't see any neuroblastoma in those....YIPPEE!! However, they will look at everypart of the tumor not just samples. They basically cut the tumor all up and make slides out of all of it---they have to let it sit in a certain type of dye for a few days and that is why it takes at least 1 week. She said they will have some preliminary results for us in 48 hours but it is best to wait for the final results. The oncologist said most kids in the intermediate stage "Stage 3" receive Chemo post surgery. So there is that chance Raylee will need Chemo again. She also said most kids in Stage 3 receive have 8 rounds of Chemo all together. No one wants her to have it again, not even the oncologist. However she said she would never just say 'no' to more Chemo if it will put Raylee at risk in the future. Which we totally understand...we never want this to come back. Once Raylee is cleared from cancer she will have CT scans every 3 months.
We have felt extremely blessed through this process, although some days are more difficult than others and some days I do get mad at God for doing this. These feelings are all normal. I don't stay mad for a long time as I know this is all part of the life lessons we need to be molded into better people. I am extremely blessed to have amazing friends and family. This has been an eye opener for us....I never knew so many people loved or cared about us. I never knew I knew so many people!!! We love you all....and pray you and your families are well....and pray that Heavenly Father will bless you as He has blessed us for the opportunity to rub shoulders with you and that He opens the windows of Heaven for you.....I understand so much better now that He made you part of our lives as a gift--to help us have strength, courage, and HOPE!