Stitches and Staples are out!

Hopes stitches and staples were moved this afternoon. People in the parking lot could've probably heard the screaming, and that was with pain meds. There was no leaking when they were removed! The bump is also gone and she hasn't complained of a headache in 2 days! Here's hoping! We go back and see the doctor in 6 weeks. Until then, we wait and pray that history doesn't repeat itself! I will post pictures as soon as we receive the dog. I Promise! Once some tricks have been formed I can post videos too.

Service Dog Update!!!

I just received confirmation that we will be getting a service dog at the end of April! Yeah!! HE will be a golden retriever. He should be smaller than JoJo was and has been working with an Occupational Therapist. He sounds like a perfect match!! Pictures to come!
I'll update after stitch and staple removal on Wed. as well.

Post Op Update

I'm not posting any more pictures since she is still spread out on the air mattress playing PS2! On Monday she started crawling, but only to and from the bathroom. She is also going on a wheelchair ride everyday on the concrete. She's still not able to push though.
Her doctor is on standby over the weekend, thankfully! Hope has had a bump on her spine that has been coming and going. No fevers or anything! It became pretty big two nights ago and I called the nurse. I spoke with the doctor yesterday and he suggested extra pressure on the spine to help the fluid absorb into the body. So far so good. She has started complaining of headaches though. I'm not sure whether to take them seriously or not. Hope has such a high pain tolerance with this stuff and I don't want to over react. (If she gets a small pin hole size drop of blood coming from her finger the world is over! Surgery or something serious, no sweat!) This is how things started before. Here's hoping history doesn't repeat itself.
We have an appointment with the nurse Wednesday to get the staples removed and stitches taken out. The nurse we see, Mary, was one of her PICU nurses at birth. What a small world! I wanted to keep everyone updated. Thank you all for your support and prayers!

We are home! Finally!!

We were scheduled to come home last night and then Hope's stomach incision started to swell. Then around 2am she had a knot in her hip the size of a baseball. Her spasticity at work. She was in more pain from that than her surgery. Thank you Morphine! We came home this morning and all is well now. She is on an air mattress in my living room. She can get up to go to the bathroom and eat. No walking or crawling for 2 weeks. Grandma bought a PS2 and that is keeping her busy! Don't know what I would do without it!

We are recooping now and I am hoping to get some sleep! Here's a video of Hope on drugs with Cinnamin Twists!

No new updates on school or service dog. I'm not pushing the service dog any! I will be calling the school next week when my brain is functional again!

Thank you again everyone! I will keep you posted on whether this surgery works or not!

Day 3 - Going home???

Hope is now at about 80 degrees!!! Yeah!!! Check out that smile! She sits like this for an hour while her last dose of antibiotics runs through then we can do a wheelchair ride. If still no leaking or build up, we go home!!!! Yeah!!! There is still a chance it could leak in a few days. We see the Dr again in 2 weeks for a follow up. She will not be allowed to walk or crawl for a few days. (Lord help me!!!) She can however sit up at an angle to watch TV and eat. This will be fun!
I have a video of Hope on drugs last night flinging Cinnamon twists in the air. It's on my phone so I will have to post it after we get home. Drugs are good!!
I look forward to a shower in my own home and hopefully a full nights sleep! It will nice to be around the family and of course, Tinkerbell. Hope has bee going crazy without her and I hear Tinkerbell is going crazy without Hope.
Thank you for visiting, gifts, phone calls, thoughts and prayers! It means so much to have all of your support time and again. I will post again tomorrow with a recap just to verify that we are home and all is good.

Day 2 - Recooping, still flat

She's in pretty good spirits. Barely on any pain meds. The pic is from our web cam so it's kind of blurry. We are still in the PICU and will be through the night, most likely. They are out of beds on the floor. Darn!
She has been playing video games in here non-stop! I am loving Play Station right now!
The doctor was just in not too long ago and gave new orders. Noon tomorrow she goes up to 30 degrees. At 7pm she can go to 70 degrees. Thursday she can start getting out of bed. She will start wearing a binder tomorrow. Have to figure out how to clean her up before then. She has betadine EVERYWHERE!!! Her back looks kinda nasty. It could just be the bandage though.
She's driving me crazy because she knows she is getting visitors tonight. Other than that, she has really been in good spirits. Dr. Shafron told her she can starts getting up tomorrow. There hasn't been any more questioning from Hope!
Visiting in the PICU is a little tough because there are certain hours of no visitors, only certain color bands, only so many bands, and have to be escorted in. The private room is nice but it has a few catches! If you are coming to visit while we are in PICU, PLEASE let me know ahead of time.
Hopefully we will be out of here Thursday afternoon!
Thank you all for your continued support, prayers and emails. It means a lot! I know we ask for them A LOT!

Out of Surgery - Day 1

All the toes are wiggling!! We had a late start and then complications in the OR but we are done now! It took 3 tries to get the catheter where it belonged. The incision on her back was reopened and expanded a little. The catheter was fed through that opening up her back along the spine and stopped between her shoulder blades. Then it was fed around her side to her abdomen on the left side (opposite last pump). He coiled some extra catheter inside hoping to attaching the pump later. There's about a two inch incision on the tummy where the catheter ends. He also crimped the end at the stomach hoping to keep spinal fluid in. We will know in 2-3 months if this is successful.
We are hoping for success. We talked this morning, in case it fails, he can go in and grind away part of the bone in her spine and attach the cathater to the bone. That would be the next option before placing a shunt. It is a pretty invasive surgery though.
We are in the PICU tonight and will move to the neuro unit tomorrow. I am in the most comfortable glider I have ever been in!! She has to lay flat for 48 hours and then a slow incline. We hope to be out of here by Thursday but may be Friday. She's not happy about having to use a diaper. I think that is the biggest challenge at the moment. She ordered food and is drinking Sprite. All signs point to the positive!
I'll keep this updated. To all of my Facebook friends, so far I haven't been able to get on. =- ( I think the hospital has a block on it. I'll keep trying.
If anyone wants to call, my cell is hit and miss with reception. Texts have been coming through okay so far. The number to the hospital is 602-546-1000 and you can just ask for her room. Right now we are in PICU 48. That will change sometime tomorrow. We are at Phoenix Children's Hospital. If anyone is/was planning on visiting, no one under the age of 12 is allowed in and you can't have any signs of being sick or you will be told to walk back out the door.
Thank you everyone for your thoughts and prayers! Now please pray for obedience from my daughter!! Ha!

Surgery Part 1 is scheduled!

We go in Monday, yes, the 9th. I will post to this again if anything changes or else Monday night. We will be at Phoenix Children's Hospital, as always. I ordered webcams but I'm not sure if I will have them before we go in. I also have no clue how to use them. With them Hope can see Grandma, Grandpa, her foster sister and most importantly, Tinkerbell (the dog)! If anyone has a webcam and would like to chat with her while she is in the hospital, please let me know. (Scott and Michelle, should I buy you a webcam?)
This surgery is to place the catheter up the spine and around to the lining of her abdomen, not the pump.