Rehab after hemorrhage

Our 4 yo daughter had a brain hemorrhage on Sunday (11/1). We are still in the intensive care unit waiting for the extra cranial ventricular drain (EVD) to come out. The hope is Monday (11/9). Our Belle has shown quite a bit of weakness on her right side- not moving her arm and leg much at all. Anyone have experience with this? Obviously, everyone’s bleed is different but we’re looking for support and some direction in terms of rehab.

Additionally, we have been told that we will need inpatient rehab for some time following hospitalization. We are located in Northern Virginia. I am compelled to take her to Kennedy Krieger in Baltimore but they won’t accept our insurance… Does anyone know more about this institute? Do they make special accommodations? And/or can anyone recommend rehab centers in the Northern Virginia area?

Anyone fundraiser for health care? If so, how have you gone about it?

All you thoughts are appreciated. Especially, healing thoughts directed at our Ella Belle.

Thank you!

I'm not too familiar but did a little research. The hospital does provide some financial assistance

http://www.kennedykrieger.org/patient-care/patient-family-support/patient-billing/financial-assistance-policy-information-sheet

You should try negotiating wiht the insurance company to cover something. Get someone in the field to do it for you or just don't take no for an answer and keep on asking for a higher and higher level manager.

In addition, since it's getting close to the end of the year, you might be able to change health plans as of Jan 1 to a carrier that covers some or most of the costs. Contact a good insurance broker that specializes in health insurance to check out your options. I know Jan 1 is a long way off, but it might help.

I know it seems like an eternity but one week out from a bleed is not very long. The brain heals SLOWLY. The good news is that it can heal. The 4Ps are essential to recovery…Patience…Persistence…Prayers and Positivity!
There is a search box located at the top right hand side of this page. Type in Kennedy Krieger and see what pops up!
BTW…one week out from my bleed I was completely paralyzed on the left side of my body. I learned to sit up…crawl and walk again. Do not lose hope!

Yes Barbara I agree with you, alot it takes time & lots of patience. This mo, we are one year out from our daughter's bleed happend end of last nov,. She to had her whole right side paralized, and her hand is still unsuable, she had to relearn to swallow, sit up, talk, walk, & we are still working on potty training , somethings will come back, some might not it all depends everyone is different. She still has some deficits, like just started walking with a cane like a mo ago, short distances & grade wise is a few grades behind where she was last year. We were at an impatient rehab for 6 weeks felt like forever, her body was to weak & tired she didn't make much recovery there at all. We brought her home and she was completly mute, drolling on her self & at a 18mo old mentality . Now she is reading at a 2nd to 3rd grade level and can talk sentences and eat, we still have the feeding tube but in time. One day at a time, never give up, it is a long road she had like 8 surgeries on her brain plus the feeding tube surgery..2 crainat & a plastic prosetic bone flap in her head later, keep faith & pray, keep calm, relax think posative. When she comes home let her rest and take daily naps, I know that has helped my daughter heal alot, dealing with her in home nurses & therapist, rest what she needs also brain to heal.
best wishes will keep her in our thoughts, been were you are..it will get better , its a rollercoaster hang on with faith.

Doctors noticed right away after my 8yr son's bleed/surgery that his right side was weaker. His AVM was in his cerebellum , near the brain stem. Nov. 17th will be a year since everything happened. He moves his right side much better, but it's still weaker then the left. Just the hands really. He's become a leftie now. Occupational therapy will help a lot with that.

Your daughter and your family are in our thoughts.

Iremember waking up after 6 weeks ina coma with my left arm being much like a noodle attached to my shoulder. Totally limp. For my out-patient rehab I went to St.Jude. One of my teachers at the Acquired BrainInjury Program I attend now said that she believes that a big part of the quality of rehab is that it is close to home. I think the st.Jude hospitalwas inArlington. Hope that’s close to you guys!

Ella Belle is such a beautiful name. I'm from Potomac, MD and did one of my rehab stints at NRH (National Rehab Hospital) in Washington, D.C - the main, Irving Street location. They have many satellite locations, and I'm sure some in NoVA. I haven't heard of Kennedy Krieger in Baltimore, but when I used to live in Oregon (where I had my bleed - I was 30 in 2011) my last hospital (Rehab institute of Oregon) was going to send me to NRH to do outpatient bc I think it's well known in the DC Metro area. My parents chose Shady Grove Adventist since it's much closer to our house and I was doing 3 sessions, 3 days a week, so it was a lot of driving. A couple years later, after I learned to walk and practiced at home for a while I chose NRH and lobbied my docs to send me there bc although the facility shows some signs of aging, they are very well equipped with harnesses etc, a full kitchen, a fake town center where you practice Activities of Daily Living etc. They also have hand therapy. I have left-sided hemiparesis but it has gotten better with a LOT of work and attention. your PT/OT will be able to help you with this.

My NRH experience was great (I scored a fantastic neuro specialist as my PT), however, I can't speak to the pediatric experience except to say I saw a fleet of kid sized wheelchairs in the pool area (I loved pool therapy) and a herd of pediatric patients used to hang out in the cafeteria chatting and laughing and totally not self conscious of their wheelchairs. It was a good vibe. As heartbreaking as it is to see little ones who get really sick, it is also amazing for me to see how chill they are about just being kids even though they do some things differently.

Hugs to Ella!! atnt

Dear Ms. Belle I am really sorry to read about your daughter. The good news is that you don't need to worry about movement in arm and leg. Within a month things will be good and within 3 months every thing will be fine around 95% because my daughter has gone through the same. I wish you good luck for your daughter.

I'm very sorry to hear of your difficult ultimate time, my heart goes out to you. I wanted to send you this message to give you hope, as I am an AVM survivor myself with right side weaknesss. I had my first bleed at 2 but was unable to have it removed and repaired until last year.. I'm now going on 38. It can be hard watching your little girl suffering, but the support you give her will be one of the most important steps to how well she recovers. If you are looking for someone you can trust who can work with you where you are, you can do what my Wife and I did. Find out what doctors are available to you and research them. Find out what people have to say about them, look for online articles. Most doctors have a page for their papers and articles and many people like yourself will post comments on hospital websites as well. Read them and you can usually get a good idea of the doctor you are dealing with. As well research the hospital. Word of mouth can be convincing. Sometimes a hospital will he a bad reputation for something, but turns out secretly they are better then they seem. I wish you all the best and send my thoughts and prYerz for your Belle.