Our daughter was at Stanford as we live close to the hospital. Dr. Steinberg is a well known specialist in AVMs. UCSF also has a good reputation but we have not been there. Because her stroke was so severe she did not have surgery to repair the AVM till 5 months later. In the beginning the focus was to get her healthy enough and moving. Forget what the hospital tells you about not burning yourself out. You have to do what is best for you and your mind. The hospital will adjust to that. My daughter had a hard time with her secretions as well and eventually had a trach so that she did not aspirate from her secretions. I'm hopeful that you feel that your son's hospital can handle his medical conditions right now. The hospital should be able to find out about seeing a specialist and about your insurance questions. There was a social worker that was assigned to ICU that was very helpful at our hospital.
Hover all you want to! It’s important for your son to know you are by his side! Don’t feel badly about telling the nurses you don’t want to be “away”. Stay strong as a couple, United you will do more for your son and the doctors and nurses will listen more if you approach this as a team.
I am an ICU nurse so I felt comfortable insisting on certain things, for example, I insisted on a safe but aggressive wean from all the sedatives once his ICP was back to normal…the doctors were shocked with the results.
If he has already had a craniotomy to remove the AVM then you now need a good inpatient peds rehab center…Levine in Charlotte NC and Shepherd in Atlanta are 2 of the best in the southeast.
Charlotte NC has an incredible team of neurosurgeons.
If you have a pastor or a priest have them visit daily if you can and pray with you and your son, Our Lord will bring you peace of you ask for it.
As I read your post this morning, I relived our experience in tears. It is so so difficult and exhausting. Be strong for your son and stay positive …smile at him and keep telling him everything will be ok…it will but probably not fast enough for you all. My husband and I never allowed our son to be without one of us the entire 2 months. Please ask any questions!!! I’m happy to help!
I had a rupture in 1959 when I was 9 years old. I know I went home after being in a coma for I don’t know how long. Then tests started. Other than an eeg, there was very little available to see the brain with. I had a pneumoencephalogram, a procedure where they strap you in a chair that moves. They took cerebro spinal fluid out and replaced it with air, so the chair moved and they watched the bubble on some old xray thing. The resukts were inconclusive. There was no block to see an air bubble stop moving. There was a bleed. I am so lucky to be alive, be very intelligent, be here to show you it is possible to live with what I call AVM aftermath. I lost vision, everyone of us lost something. I believe many of us share some of the same brain deficits. I think it would be interesting to know if I am right about that. I will be thinking of you and your child.</>
Posterior fossa rupture. He’s off sedation now, but not at all interactive. Just spastic movements.
Yes, they’re trying Amantadine and Risperdol. He’s moving a lot, but not purposefully.
Thank you. I’ll contact Stanford.
We're so sorry you are having to go through this. My daughter just turned 10 and we have been dealing with her large, deep AVM for more than two years. Our experience has been different but I will PM you my contact information if you just need another dad to talk with. I also see that you have been given some leads at Stanford as well as UCSF, and I would strongly encourage you to reach out to both places. I'm also willing to share information anytime. My family and I will be praying for you and yours.
Hi Yon L., do you have a specific contact at UCSF?
Find the BEST pediatric inpatient rehabilitation facility you can. We were fortunate to live in Charlotte which has the top one on the carolinas. There were families from Georgia, Virginia and South Carolina rooming in at the Ronald McDonald house for months so their child could have top notch rehab.
Michael T. Lawton MD
University of California, San Francisco
Department of Neurological Surgery
505 Parnassus Ave. Rm. M779
San Francisco, CA 94143-0112
Phone: 415/■■■■■■■■ (academic)
Yesterday Misha held up two, then three fingers when directed. Weak responses, but definite. Wife and I broke down.
Thank you everyone for honest and open information, and understanding.It helps a ton.
Praise God! So happy to hear this news. You have a lot of people praying here in the Carolinas for your little boy and for your family. Don’t be discouraged if the progression is slow. Don’t mean to harp on the sedation thing but sedation often times is continued via the feeding tube. Are you sure he’s not getting a weaning dosage. They kept one kid in rehab on it for months and his parents couldn’t understand why he kept falling asleep during therapy. They do have to wean it and not stop it abruptly but it can be done aggressively in a safe manner.
Amen what awesome news, she is responding.....I have tears in my eyes cause I and all of us know exactly what you are going through.....keep BELIEVING AND HAVING FATIH AND BEING POSITIVE. Our prayers are with you.
We “hovered” the whole time. And as a single parent it was not only me but Finn’s 4 siblings as well. But, you do need a break to stay strong. While still in the PICU a very organized friend coordinated help- dinners were bought and Others sat w Finn while we had quick dinner w a friend. After we moved from the PICU to the rehab floor. Someone came every night for 2+ hours. - we took our breaks then. People kept saying what can I do to help, I want to help. I couldn’t even figure out what that would look like, so this organized friend made executive decisions for deciding help. Some friends even took my 91 yr old mom out to dinners and to the hospital for visits cause I didn’t go home. All of us lived day in and day out at the hospital, alternating sleeping/being in the family lounge w being in his room. His sister was the 1st to see "purposeful response"
It’s been 2 yrs and Finn just graduated from high school. We visited the PICU to let them know and they all loved it! They very much appreciated how our family was strong together for Finn. You are an essential, unreplaceable part of the healing team for your son. Those healthcare folks were our teammates was how we looked at it. We had roles just like they did. We learned much from them so we could support their efforts. We also pitched in- changing diapers, bathing, shampooing, brushing teeth, un clenching fingers, lotion on feet, etcetc. Out of PICU -feeding, baths w music, changing sheets, we would do whatever. we participated in ways that were not specifically medical as much as we could.