Leah’s MRI is today at 4:00. Please pray that the results show healing. ❤️🙏
Rehab is going great. Leah is getting stronger every day. She is working incredibly hard, and I’m so proud of her. Her BPAP and SmartVest System are scheduled to arrive this Wednesday. Tomorrow morning we have a meeting with the medical team to discuss future plans.
We were planning on Leah having her MRI this Thursday. Much to our surprise, the nurses showed up after her morning therapy sessions today and announced they were taking her to the MRI. A 2+ hour MRI isn’t just something you can spring on someone, let alone a twelve year old. When the nurse insisted it would only take 45 minutes, I knew the MRI order was incorrect, and I refused the MRI. Typically it’s the brain and the top of the spine with and without contrast. It had been scheduled for the brain only, with no contrast. Apparently, someone from the physiatry team ordered it, because Leah is inpatient under their care… without consulting her oncologist, I’m guessing- which is disturbing.
After the order was corrected, we were told the MRI would be tomorrow. We scheduled a time for her numbing patch, IV, and labs prior to the MRI. All of which wasn’t even on their radar for today. Then, as of 6:00 this evening, we were informed the MRI might be canceled do to cardiology monitoring her heart for 24 hours tomorrow. The best part is cardiology was supposed to see us today, but never showed up… and nobody even mentioned the 24 hour monitoring.
I’m definitely having a hard time with the lack of organization and communication. When the one thing I want to do is provide my daughter with the very best medical care possible, and these are the things going on around us, I’m left feeling very disappointed. Disappointed in them and disappointed in myself.
Trusting in the Lord to make our paths straight…
Please pray that the MRI shows healing, that the cardiology reports are normal, and for Leah’s continued strength and peace. 🙏
Also, check out Bonfire and St. Baldrick’s on Twitter. ❤️
Two years ago, we honored our Brave Strong Girl with a t-shirt campaign to support Childhood Cancer Awareness. This year, we planned to honor Leah with another t-shirt campaign, wearing gray in May to support Brain Cancer Awareness. Following Leah’s hospitalization, we decided to launch the campaign earlier than initially planned. All proceeds will benefit the St. Baldrick’s Foundation. Only 4% of U.S. federal funding is dedicated to childhood cancer research. St. Baldrick’s is the largest private funder of childhood cancer research. Their mission is to find cures and to give childhood cancer survivors long and healthy lives. And that is our wish for our Brave Strong Girl… a long and healthy life.
Link to buy a BraveStrongGirl shirt:
Learn more about St. Baldrick’s Foundation:
On Tuesday, we were moved out of the PICU and onto the inpatient rehab floor. They are still monitoring Leah’s breathing at night. During the day, she is completely off oxygen, and her oxygen saturation is checked every four hours. Nothing remarkable has been noted. She has two hours of PT and two hours of OT every day, and she is making good progress. Her next MRI is Thursday. We are holding off on the hypobaric oxygen chamber until we have the MRI results.
Once they no longer need to monitor Leah’s breathing, we hope to be moved to the day rehab program. She would still have four hours of therapy daily, but we would commute.
Today, we were able to go home for Thanksgiving. We will also be able to spend some time at home on the weekends, but we have to return each evening to sleep.
Being away from home is AWFUL. Hoping we can move to day rehab soon.
Praying for miraculous MRI results on Thursday. 🙏
Since Friday, we’ve been trapped in the PICU due to insurance legistics, anxiously awaiting the delivery of our home BPAP. Today we learned it’s not coming. Our insurance will not cover a BPAP while inpatient. And the hospital doesn’t provide a BPAP outside of the PICU. So unless they planned to keep us prisoners of these four blue walls forever, one of them had to cave. Knowing full well that it wouldn’t be the insurance company, the hospital is providing us with a BPAP on the seventh floor. Then, insurance will send our home unit 24 hours prior to our final discharge, whenever that will be, so we can use it one night under supervision. How ridiculous… I would imagine the money insurance paid to keep us in the PICU three or four extra nights was ten times the cost of providing us with a BPAP while inpatient. Just doesn’t make sense. The part that is most disappointing is that Leah has to continue using the hospital BPAP while inpatient. It’s like a noisy tornado on her face, compared to the quiet, peaceful home unit we experienced during the sleep study. Mitch called the medical supply company to see what it would cost to pay cash to use the unit while inpatient. They are supposed to call back tomorrow, hopefully willing to negotiate a fair price. With all the stress Leah endures daily, it’s a no-brainer to do what we can to give her a peaceful night’s sleep.
Today, physiatry filed for the insurance to preapprove the inpatient rehab. If that comes back in a timely fashion (not holding my breath), we will be moved the the seventh floor tomorrow. But in an effort to keep our sanity, we have prepared ourselves for the fact that it may not happen until Wednesday.
Good news- it is likely we will be given a day pass to take Leah home for a few hours on Thanksgiving Day. Fingers crossed.
Leah looks and feels so much better than a few weeks ago. Every day she getting stronger, and for the most part, she is in good spirits.
I tell Leah that if she thinks about it, she’ll be able to feel all the people lifting her up prayer. When she’s sad and missing home. Or when she’s sick of people, wires, and tape touching her. And especially during physical therapy when she’s pushing herself to do really hard things.
Please continue to pray that Leah is blessed with peace, strength, and complete healing.
Sleep study went well. The final settings were very close to the settings from the previous evening, which had helped lower her CO2. Her CO2 levels dropped again today, so we know the new settings are working. They also monitored her CO2 levels during the day yesterday, and the results were adequate.
During the sleep study, Leah used a BPAP that was similar to a home BPAP. It was much more comfortable and quiet than the PICU equipment, so we are anxious to receive our own home equipment. The preapproval for home equipment was sent to our insurance yesterday. Once approved, our home equipment will be sent to the PICU. Then we have to spend one additional night being monitored on the home equipment before being released to the 7th floor. We don’t really have a timeline. Hoping to be released by Tuesday.
Once on the 7th floor, we will have a little more freedom, and her rehab will take place in the gym.
She is busy with therapy excercises, and she works on art projects in her down time. This is Leah’s painting from a recent art therapy session.
Still in PICU. CO2 dropped some with the new setting on the BPAP. Good news. Sleep study tonight. Will move to 7th floor for about three weeks of in patient therapy once released from PICU. Will start hypobaric oxygen chamber the week after the holiday.
Thank you for praying for our sweet Leah.