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Gracie moved back up to the regular floor last Friday and stayed there over the weekend. They increased her milk feeds and decreased the TPN til she was up to 40 ml/hr. She was doing really well and we weredischarged Monday morning to make the drive down to Ft worth. We left at 830 am and made it to her 115 Appointment at 117. Not bad! Lol
she had labs done that day and saw Dr granger. On tuesday she had the CT scan and MIBG injection. Wednesday was the MIBG scan and Echocardiogram. And Thursday was the bone marrow aspirates and biopsies. Then they realized she hadn't had her dose of pentamadine last month an it was supposed to be every 28 days and I hadn't realized. So after the bone marrows we had to go back to the clinic for an hour infusion of pentamadine, it's a precautionary antibiotic for pneumonia.
We were able to head home at 230 and made it home at 730. Gracie and grandma made a gingerbread house when we got home and she loved it. She was so excited to be home! It had been two weeks since we left straight from Tulsa to Texas.
We woke up bright and early this morning and dropped off grandma at the airport and cane to the hospital for her dental work. Her teeth are awful from all the chemo and stem cell transplant. I think she has a cavity in almost every tooth and they are just getting worse and worse so I am so grateful we are able to get it done today it was either today or in 6 months after immunotherapy is complete. She will go back the 29th to start her immunotherapy. I signed the consent forms on Monday and it was a bit overwhelming, there were 8 pages of potential side effects. It is still pretty early in the study to really know the odds of getting certain side effects but they said most kids it is like flu symptoms and pain. There are going to be 105 kids in the study and 15 from cook Childrens hospital in ft worth. This study has shown a 20% chance increase in survival rates so we are very optimistic about it and it will put her chances at about 50-60% instead of 30-40 where we are currently if we stopped now.
We feel so blessed to have had thanksgiving at home as a family and now Christmas also! We are going to have a fun 10 days spending family time together. Please continue to pray that she will stay well and happy. Love to you all and we wish you a merry Christmas!!
I don't know if I mentioned that they took out the port and central lines and put in a picc line til the 30th :) I am continuing her iv antibiotics at home

Extubated!

Gracie was able to get extubated this morning and she was so relieved. The first words out of her mouth were "pepsi. pepsi. pepsi." she had been mouthing the word for the past 5 days and also apple juice and water. She got some little sips and did really well with it and had a lot of drinks throughout the day. They started back her milk feeds at 5 ml an hour and she is tolerating it so far.
her blood pressure has been high and they think it is from all the hydrocortisone they have been giving her so they are weaning her down on that and giving blood pressure meds in the meantime.
She was able to get radiation today and will have the last session tomorrow. She did really well as always even though today she was hurting.
She finally started peeing out a lot of the extra fluid and they were worried it would make her sodium go way up like it usually does. they tested it and it was fine so they let her keep peeing it off. they tested a few hours later and it was still ok.
I came home to sleep tonight and Brandon is staying with her. we are trading off nights. we are so thankful that she is off the vent and breathing well on her own. We thank you for all of your prayers and ask you to continue them as we know they are what helps the most! She isnt out of the woods yet by any means but she had a pretty ok day considering all.

Still here in PICU

Gracie is still intubated in the PICU. She now has pulmonary edema which they think is from a platelet transfusion she had, although it could be several other things or all the fluid. She has put on ten pounds of fluid in 5 days!!! That is ridiculous. She is on lasix to try to get her to pee out the extra fluid but it also causes her to have metabolic acidosis. Her blood ph is still normal so that is ok. Her sodiums have been a little high but not too bad. I think we will stay away from the ddavp as much as possible. She only had the one dose. She is beyond frustrated with being intubated. She tries to mouth the words but a lot of the time we can't understand and then she gets more frustrated. It breaks my heart! I had to walk away tonight for a few minutes and cry cause she was so sad and frustrated. I had her daddy see if he could tell what she was saying. She asked if he would take her home. Poor angel. She has been so patient and hopefully they will get her extubated in the morning. Thy are weaning her off slowly and she is doing ok so far. She needs to finish her last two doses if radiation on Thursday and friday. Then we are going to do a hospital to hospital transfer on Monday to ft worth for her pre- antibodies workup. They are talking wih insurance to get Them to approve the ambulance.
The blood cultures are negative now for the last few days so they cut back to one antibiotic. She is c diff positive for the 4th time and starting on flagyl for that. It is so frustrating to watch her suffer.
Please keep praying hard for her.

Pseudomonas sepsis

bipap
intubated


The blood cultures all came back positive as pseudomonas sepsis. They started her on oxygen Friday night because she was having a rough time breathing. Her belly is distended because of the fluid in her belly. this is because of the infection, she also has DIC. http://emedicine.medscape.com/article/779097-overview
DIC stands for Disseminated intravascular coagulation.
Saturday night they started her on bipap to help her breath but she kept pulling it off and they just did a high flow nasal oxygen. Sunday they did surgery to remove her port and central lines because they were the source of the infection. She had platelets 3 times and also plasma and did good during surgery without any clotting problems. They also started her on lasix to try to get her to pee out some of the added fluid. She is weaned off the levophed and coming down off the dopamine also. {for blood pressure}
They kept her sedated and intubabted all yesterday and all night last night to let her body rest. She had a rough few days of really working hard to breathe and got little sleep because of it.
Thank you everyone for fasting yesterday and for praying always. we cant tell you how much it means to us!!!

Amazing Gracie

PICU (again)

Gracie is back at the PICU. She said she was tired last night around 9 and that she was cold and had a headache. I took her temperature and it was normal and gave her lortab for the pain. a couple hours later she woke up puking and she was very hot! I took her temperature again and it was 104. so i immediatly knew we needed to take her in (obviously, right) so I called the oncologist and they said to bring her in. I took her in and they drew blood cultures from all 3 lines and started anibiotics and saline fluids.They gave her 3 saline boluses, Her blood pressure was normal at that point but it quickly dropped very low. getting down to 30/13 toward morning so they transferred her to the PICU to start a dopamine drip to increase her bp. She has been there at the PICU for about 4 hours and no change in her bp.(it was 42/15 when i came home just now for a nap. she is on the dopamine and also albumin along with 2 antibiotics. Her first blood culture already came back positive for bacteria which was very fast. it usually takes 24-48 hours. The doctor said she has pretty significant sepsis and will likely be taking out her double lumen line and possibly her port. She is in a lot of pain throughout her body. Please pray for her pain to be lessened and that the infection will be cleared from her body. My mom is on a plane now and will be here this afternoon. So thankful for her and also those who help watch my kids. xoxo