Lexi update!! Surgery today! (UPDATED X2)

Here is an update from Lexi's mom on her Caring Bridge site. Please do stop over and send her well wishes!! You can also send Lexi a card by visiting The Nationwide Childrens Hospital website. Scot and Jen would love for Lexi to receive some cards today. This is a bit of a journal entry from Jen, about the cards:

Nationwide Children's hospital offers a terrific greeting card program where anyone can go to Children's website and create a greeting card. The hospital staff will then print off the cards and deliver them to the patients room. If anyone is interested in doing this when Lexi has her surgery here is the link to use. I also put it on the first page under "My story" The link to use is:

http://www.childlab.com/gd/applications/controller.cfm?&page=246


These are from her Journal entries, also:

Wednesday, November 18, 2009 9:28 PM, EST

Hello there! Boy have we had a busy week. I can definitley say no one is ever bored at our house! On Tuesday evening, the make a wish volunteers came to our house to start the paperwork for granting Alexis's wish. Alexis's wish is to go to Walt Disney World. For about 3 years now Alexis has been asking when we are going and we have always said when Aaron is around 5. When it came time to choose her wish there was no question. She also said she wants to fly in an airplane and see/swim with the dolphins. She was excited to know that those things can still happen if she goes to Walt Disney World. Aaron is also very excited about going! When the volunteers came to the house one volunteer completed the paperwork with Scot and I while the other volunteer played with Aaron and Alexis with the gifts they brought them. Of course our "little ham" Aaron was not shy at all. He was hugging both volunteers and talking their ears off. He thought the ramp the volunteer Mary made for his new airplanes was cool. Alexis had fun too! She dragged her Ker plunk game out and the three of them played the game together. Alexis's wish will take a little while to plan so we would go on the trip most likely between May-August.

Over the weekend, I received a letter in the mail from our insurance company stating that the surgeon scheduled to complete Alexis's surgery is not in network. Of course this concerned me a bit. After all, I have never received a letter like this before and did not really know what to do about it. I want to thank my friend Linda for suggesting that I call the surgery unit to find out what they were doing about it before I called other people. This was the best thing to do because they told me to do nothing and that if for some reason my insurance agency did not cover the surgeon the hospital would make up the difference. This surgeon just started in September and her name is not on all of the approved lists yet. This was a great relief. Our final notices for Alexis's bills have been coming in but our oncology patient accounts advocate and BCMH has arranged for us to put our payments on hold until BCMH kicks in. I have had to make many phone calls to ensure that each seperate department has placed our bills on hold so they do not send us to collections. BCMH is 16-20 weeks out from application date. BCMH is a state funded agency that will pay what our insurance company won't pay for the first 3 months of diagnosis. Only certain diagnoses falls under this, however Alexis's diagnosis has already been approved. We are very thankful for this program, they should cover everything Alexis had through October 28th. My car is being fixed from the deer that hit me last week.

Today my in-laws took me and the kids to drop off the rental car and then drove us to Children's for Alexis to be admitted to the hospital for her bowel prep before surgery tomorrow.

When we arrived to the hospital I mentioned that Alexis had a runny nose and has been sneezing. At that point no one was concerned. When the surgeon came and I told her Alexis's symptoms she said that she was told it was just allergies. However, Alexis has had a runny nose on and off all day. At this point the surgeon became concerned and ordered a viral test, where the nurse had to swab the back of her nose twice. The surgeon stated that if she has a viral infection they will post pone the surgery for at least a week to prevent the chance of her having pnemonia. Unfortunantly, the test was not sent to the lab until 4:20pm. 4 pm is the cutoff for the lab. So now we have to wait until tomorrow to find out if the surgery is a go. The bad thing is that Alexis had to complete her bowel prep which includes a tube down her nose, diarrhea and a clear liquid diet. Please keep us in your thoughts and hope that all of this is for not. Even though the nurses in this unit have had to be a lot more invasive to Alexis she has been extremely brave. Several nurses have told her that she has done the best that they have ever seen with the treatments. Alexis also had to have blood taken out of a vein instead of her tubies. The lab work showed that Alexis's clotting ability is lower than it should be and the surgeon was afraid that the heparin diluted the labs. Thus, she ordered blood work taken from a vein. The surgery unit has definitely been the most invasive to Alexis but if they can keep her from having pnemonia or any other complications it will all be worth it. If the third labs show that Alexis's clotting ability is still low then the surgeon will give her medicine and more blood (she had to receive a blood transfusion today) to ensure there are no complications. The surgeon also told us that the tumor is currently about 3cm in diameter and that she feels she should be able to remove all of the tumor without having to remove one of her kidneys. However, if there are any unforseen cicumstances then she may need to remove one of her kidneys. I am so very proud of Alexis for being so brave and strong. It is amazing to watch her. When she has to have something done that she doesn't want she will ask a zillion questions about exactly what to expect, grab my hand, take a deep breath, insist that the nurses wait till she is ready and then is as cooperative than most adults can be.

Well, I know I wrote a lot of details but if I ever decide to write a book someday I will have all most of the details waiting for me. Thank you again for everyone's love and support. Oh, I almost forgot, someone called our room tonight when I was out and talked to Scot. We wanted to thank you for wishing us the best with Alexis's surgery but unfortunantly Scot did not catch your name. Anyway, thank you for thinking of us, we appreciate it.

Surgery is scheduled for noon tomorrow, however if the surgeon can get a room earlier that is what she prefers. So, I am not sure when it will be, but will keep everyone posted if I can. Aaron is staying with Grandma and Grandpa Howard tomorrow and my parents are coming to the hospital to be here for the surgery.

Please keep us in your thoughts and prayers tomorrow.

Love, Jen

Thursday, November 19, 2009 8:37 AM, EST

I forgot to mention that Alexis' room number is currently 4026. She may have to stay in ICU but we are not sure yet. We still have not been cleared for surgery...b

ut should find out soon. I will try to keep everyone posted.

Jen

PLEASE SAY A PRAYER FOR LEXI TODAY!!

UPDATE

Thursday, November 19, 2009 11:31 AM, EST

Hello to all our Wellwishers

, This is Mary , Jennifers Mom. Well all the tests for the viral infection came back negative. They also did a chest x-ray just to be on the safe side and it looked good. They just came about 20 minutes ago to take Alexis down to prep her for surgery. The surgery is scheduled to start at 12:30. It should take about 2-3 hours. Jennifer and Scot will stay with her until they take her in. Alexis is being very brave. When they came in to get her she had to go to the bathroom, so they left and waited in the hall. When they came back the second time she said she had a belly ache. A little case of nerves I'm sure.
So now we wait. Thank you all for your thoughts and prayers. We couldn't get through this with out your support. We'll keep you posted.

Love , Mary

Thursday, November 19, 2009 1:19 PM, EST

Hi Everyone! I just spoke to Dr. Aldrink's nurse and they are all prepped for the main surgery and are getting ready to start. I did not realize it until today but Alexis was also scheduled for a bone marrow aspiration prior to the main surgery. Dr. Kerlin one of the oncologists came out about 30 minutes ago and said that the bone marrow aspiration went well. He said that it was cute because when they first brought her back for surgery she was upset but then after the anethesiolo

gist calmed her down Alexis pushed her own medicine into her tubey that put her to sleep. That is our miss independent Alexis! Just an FYI- the surgeon did change her mind and stated that the surgery could take 3-4 hours, but that they will keep us updated throughout the surgery.

Thank you for the continued positive thoughts and prayers.
Jen