My Brave Girl

Update 15- 

June 5 update-

Olivia is a very brave girl. I am so proud of how she handled her pain in the hospital and so far through her recovery. In her mind, it has always been to be better than the day before. She continues to have what her surgeon calls "blips", but she is pushing through. As of late she is dealing with lower left back pain, and some burning in her ribs, which is nerve issues from the manipulation of her muscles in moving them from the bone during surgery. She has also felt far more dependent on others than she would like which has frustrated her. The things we take for granted are difficult for her, but those will get better in due time. Right now, it's nearly summer, school is out, and she wants to be able to swim and go to the beach, but can't. And it will be months more before she can.

On a personal note, I sound like a broken record I know, but we are so appreciative of the calls, notes, cards, and visits Olivia has received. I can't begin to tell you how helpful it is and continues to be as we transition home and Olivia starts to heal. I hope to be back to work full time soon. In the meantime, we couldn't be doing all this without all of you.

Update 16-

June 12-
Olivia continues to heal! At just over 5 weeks from her surgery, she accomplishes new things every day, regaining the ability to do small tasks she hasn't been able to do since before her surgery. This has helped in building back her confidence! Her next goal; wading in a pool. Except for a small bit of leftover scabbing, this should happen soon. It's been hard to recover with all her friends hitting the pool or beach!

Next up will be Olivia's post op appointment in Philadelphia on July 10th!

Going home

Our hero, Dr. Samdani, with his brave patient

Update 13- 

May 23- Going home!
We head home from Philadelphia today. Olivia had her post op follow up yesterday and is cleared to fly! Dr S is pleased with her progress and says she looks good (meaning her back and its healing process). He did notice a fracture in her lower back that she's had a long time, possibly since birth, that he sees in 6% of the population; nothing to be concerned about at this point.

Olivia will be back in Philly in July for another follow up appt. In the meantime walking is encouraged and resting and eating lots of protein is needed.

We thank you for the love and good thoughts as well as the financial support we've received and continue to receive. We have needed it all. She has a long road to recovery and today is our first step home to getting there.

Update 14- 

May 27 update-
We arrived home Friday evening from Olivia's surgery. It was good to be home!

Olivia is settling in to recover and finally able to rest in her own bed. She is off of her heavy painkillers 2 weeks out from surgery! She has a great attitude about recovery and doing well.

We head to Philadelphia again in July for her 6 week follow up appointment.

Again, we thank you for your love and prayerst! We have needed it all and appreciate it more than you know!

Day after Surgery

Update 9-  May 13

Good morning from Philadelphia! Olivia is doing well. Last night was a bit rough as she was awake a lot. She really wanted something to drink and was consistently asking to get up. Her blood pressure dropped pretty low and her respiration was too high, but this morning it has leveled out.

At 1 am she became insistent about drinking and was told not until 10 am or later. She won that battle at 7 am. She bugged the ICU nurse so much that they came to let her stand about 9:30. She was extremely brave. She did not cry, wince, moan in pain. She focused on breathing and getting up. The nurses continue to say her behavior is unusual given the surgery.

They've taken out her oxygen, and arterial line so down to 3 IVs now. She's also walked but I missed it as I went to get breakfast. They did not expect her to do this until later today or tomorrow. 

assisted walking

I'll post another update later or tomorrow. If she continues to do well, she will move from ICU today.

Thanks for all the messages, love, prayers, and support. Means so much!

Update 10-

Wednesday afternoon update- May 14

Olivia was moved from Pediatric ICU to her own room yesterday afternoon. She began walking and did really well. She felt a little unsteady and continues to feel "crooked". Straight feels crooked to her now. Totally understandable.

She finally was given jello to eat and it just turned her around. She felt enormously better before bed. And for the first time got several hours of uninterrupted sleep. Most nights we have been up nearly all night. She settled late, and was up a good bit, but from 5:00 am until nearly 9:30 she slept soundly.

Today has been much rougher. Her doctor told her the next couple of days would be. Her back drain has been an issue today and unfortunately the hope that it would come out today has been turned into a couple days. However just before this writing her morphine drip was removed and oral pain meds have begun. It's now her eating will be so important to keep her from getting sick.

We hope to hear tomorrow or Friday if she will be having the second surgery next week. We are all hoping now that the lower spine responds and there will not be a need for it.

The doctors, nurses and volunteers at Shriner's have been so amazing. And the outpouring of love from friends and family. We love hearing from you and appreciate your continued prayers, love, and support.

Surgery Day

Update 7-

Today is surgery day! Olivia's day started very early with X-rays around 6:30. From there we went straight to the pre-op area where we met her surgeon and anesthesiologists and OR nurses.

We just received the first update that the surgery began about 30 minutes ago and she is stable. The first part of her surgery should be over and the tedious part has begun and will last several hours now.

We ask for prayers for the doctor, nurses and the anesthesiologists who are with her...

 IV TIME

GETTING WARMED UP

Update 8-

Happy Monday Evening! Olivia's surgery went well. The results are nothing short of amazing! Olivia is awake tonight and responding well. Today is the easy day as her pain medicines kick in quickly. Tomorrow she will stand for the first time with a straight upper spine. We've been told it will feel very weird to her. She has already complained of laying crooked when in fact her crooked is straight!!!

Another update tomorrow!

MRI news

Update 4- 

Update- April 15, 2014- The MRI's came back good, meaning no sign of cause or complication. In our terms this is a great thing because the scoliosis she has is not because of something degenerative. Tests on her spinal chord were negative which is also good. No sign of complication clears her MRI's for surgeries! The pulmonary function test came back positive as well.

We are down to the last 2 sets of testing; her lab work and her echocardiogram. Olivia is pushing to finish up school by May 9th and get her exams done. SAT testing is this week, so labs will wait until Friday afternoon or next week. The echocardiogram is next Wednesday am at the hospital.

We ask for prayers for the echo testing. 2 previous EKG's came back with an area of concern, and this will be the last test to rule out those concerns and clear her for the surgeries.

Thank you all for continued love and support. We appreciate hearing from everyone. Feel free to share Olivia's story as we want all the prayers we can get for her as she heads to surgeries.

(the photo is Olivia and her sister sitting on some great old cars!)

Update 5-

Great news!!!

This has been big couple of weeks. ALL of Olivia's pre-tests are complete. AND, the one I had been really worried about was done as well on Wednesday morning.

A few weeks ago, Olivia had an EKG which came back abnormal with a diagnosis of RVH, right ventricular hypertrophy. The internet was not my friend in this case as it only made me worry more. We went in for a consult with her pediatric cardiologist, and he repeated the EKG believing it had been an error but it came out the same. So for the last couple weeks, I've been anxious and awaiting her echo cardiogram at the hospital. Wednesday was the day, and the results came back yesterday. She's all GOOD!!! NO signs of the RVH and all cleared for surgery! Right ventricular hypertrophy, the enlargement of the right ventricle, is considered to be one of the rare diseases of the heart. Unlike the left ventricle, which tends to overwork itself when it detects abnormalities, the right ventricle dilutes itself.

What a relief! We can all relax now and get ready the next two weeks for Olivia to finish up school and prepare to head to Philadelphia. I can't tell you how much it has mean to receive all the messages and texts of prayers and praise!

Another really cool thing I found out about that Olivia will get to utilize is the new EOS machine at Shriner's in Philadelphia. The EOS is a low dost X-ray machine that exposes kids to 1/10 the radiation of a regular X-ray machine. For those kids, like Olivia, who need multiple X-rays, this machine is more safe and amazing. And it is now at the hospital she is headed to!

We are all breathing again! Thanks for your love and support and for poking me to do these updates!!