Today Ryan had a good day. Not much change overall. His eyes were open a lot and he continued to try to move his right arm. Tomorrow he will have a cat scan to follow up on the fluid that was seen on the last scan. Depending on the outcome of the scan and depending on his pulmonary status, Ryan might be able to be medically flown to Mass as early as next week! This depends on many variables however we need to be prepared just in case.
What we need is help with some decisions for Ryan:
1) the doctors are recommending a Long term acute care (LTAC) facility before he goes to Rehab (this would be to save his rehab for when he is more awake as the number of days are limited). If he does got to LTAC where is the best facility?
2) LTAC may not be an option in mass so he may need to go directly to inpatient rehab. If this is the case what is the BEST facility for his care? (Needs to include Cognitive Rehab, OT, PT etc.)
3) Medical Flight: We need help researching the options and the cost. Most want payment up front. Options that have been mentioned : US Air Ambulance, Angel Flight, National Patient Travel Center, Air Compassion of America. We have a nurse that will fly with Ryan but we also need a paramedic any takers?? a pilot and a copilot.
4) If we cannot get Ryan into a facility he will have to go to my folks. If this is the case we REALLY need help. We do not have any medical backgrounds and it is VERY important for him to start rehab as soon as possible. Plus, he may still be on the trach, feed tube etc.
5) We need a recommendation for a GREAT Neurosurgeon. After Ryan's swelling decreases he will need to have surgery again to put back into his head the bone that was removed from his skull. They have that frozen here and it can be shipped to Mass. However, we want to make sure he had a surgeon who is familiar with his particular procedure.
6) Please stay tuned for fundraising information and events. The medical flight alone will be very expensive. However, rehab will be insanely expensive especially if he can only get limited coverage.
Please feel free to email me at CLCreeden@aol.com with any information that you can gather. We need to set some of this up ASAP. Thanks so much for any help you can offer.
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Cric, Loesje, and Mike,
ReplyDeleteI sent an email to my mom about advice on long-term care, but an excellent neurosurgeon who did my operation is Dr. Rees Cosgrove at Lahey Clinic in Burlington, MA--he is the head of the neuro dept. there. His # : (781) 744-1990. A webpage with his info: http://www.lahey.org/PhysDir/Detail.asp?ID=1776
Love, Alissa
Cric~ I will ask my mom, she used to work for 3 different neurosurgeons they were on the cape and they might be able to help with some of the questions. I will let you know...... lots of Love Jenn
ReplyDeleteCric, I will forward the info to two of my friends from BU who are PTs. They aren't on the east coast, but may have advice for his care. Love Corrie
ReplyDeleteThis morning I spoke to the only pilot I know. His name is Christopher Lowry. He will be contacting You all through this site. He is a private corporate pilot.
ReplyDeleteLooking Forward To Ryan's Recovery!!!!
Lorene
Cerissa, Loesje, and Mike,
ReplyDeleteRight after reding this update, I contacted my best friend Jen Lowry. Her father is the only pilot that I know. But I see that Lorene has already spoken directly with him! I hope he can help! Also, if she hasn't already, Mary (Tom's mom) should be emailing you a bunch of information and advice that she gathered through working at the rehab hospital in Sandwich. Tom, myself, my sister, and Brian are currently organizing a fundraiser to Run for Ryan, but all of the details aren't quite ironed out just yet. Hopefully by this weekend everything will be finalized and the website will be up and running. We will keep you posted. We all continue to send our prayers, sincerest thoughts, and optimism to Ryan's recovery and your family.
~Dominique
Hi Cric,
ReplyDeleteI contacted my friend Erin who workds at Spaulding Rehab in Boston as an SLP. She works with patients with brain injuries similar to Ryan's. I will get in touch with yo uwhen I hear back from her today. Stay strong, you're doing great!
Love, Amy
Hi Cerrisa,
ReplyDeleteI am Chris Lowry. Dominique and Jen went to school with your older boy Jesse. So sorry to hear about Ryan's accident. You've got many friends thinking about your family in Sandwich. I am a pilot very familiar with Boston Med Flight (BMF). They are out of range for an Austin pick up, but I can work with Air Ambulance Specialists nationwide. I just need some details. I know you're working on a specific destination facility. We would need that before the air transport is set, but hopefully we can get everything else lined up until you have a bed/facility for him. Air Ambulance Services (AAS) come with nurses/emts on board, depending upon the level of care the patient needs enroute. Angel Flight et. al. are really space available seats on corporate flights for ambulatory kids. Sounds like Ryan needs more than that right now. Boston Med Flight has a data base of facilities & phone numbers in the greater Boston Area if that would be of any help in your search. But it looks like several professionals posted on the site are on the case. I would also need some idea of what your insurance coverage may, or may not, be. These are private matters, so I can put you in contact with the AAS team in Denver if you would like to talk to them directly.
AAS is going to call me back with some numbers so I will pass that on as soon I get it. Please don't hesitate to contact me with any questions.
Chris Lowry
(c) 508-420-2742(h)
clowry2727@gmail.com
Hi Ceris. I am going to speak with my mom and see if she has any ideas. A lot of her clients have been in similar situations to Ryan. The problem is we are in NY so I don't know how much she knows about facilities in Boston...but, we will look into it.
ReplyDeleteLots of love to all of you.
Tricia
when i was in my accident in 97 i had a subdural hematoma in the brain. I was at Mass General for the 2 month duration and then went to Braintree Rehab..That was my parents choice over Spaulding at that time plus Braintree Rehab Network accepted Trach patients for i had a trach to that was removed there. Spualding wasnt at that time a ventilator dependent rehab. My mom knows who the neurosurgeons were there. Mass General and Braintree were so helpful in the aid to my health at that point and my independence...
ReplyDeletegary clarke
wheelz23@comcast.net
508-566-1926 cell
We spoke with a friend who use to work for a company that dealt with med flights. He gave us the following info and some companies to look into. If you would like to speak to him directly I can get you his contact info.
ReplyDeleteAdam & Laura Tedeschi
Phoenix Air http://www.phoenixair.com/ambulance.php
And AASI Air Ambulance Specialists - http://www.airaasi.com/
They could even call Boston Medflight.
A lot of these companies have what is called "empty leg" flights, meaning they
flew someone from Boston to Texas, but have no patient to fly back. They
typically dont want to "waste" the flight and will offer the flight at a cheaper
rate.
im so sorry to hear about ryan.i went to school with him and remember him well.i am a cna certified nurses assistent...if you need any help please please let me know.
ReplyDeletebeth drumm
508 360 0898
For a neurosurgeon, I can recommend Dr. Jacob Rachlin.
ReplyDeleteHe's with Beth Israel, and operated on my mother. He's at 1101 Beacon Street in Brookline 617-731-8334
We loved him, and he did a wonderful job. Also, Spaulding is superb for rehab, and on the Cape, http://www.rhci.org/inpatient-care/
When my husband was injured, before he passed, we looked into this- might be a good option if your parents are still in Sandwich?
Anne Jackson Bell
Cerrisa:
ReplyDeleteThinking about you all often and checkin in for updates. I went to school with Ryan. I was last reading this update and as a nurse at BWH often deal with patients with Trach and PEGs in Ryans condition. A lot of patients we get are sent to Braintree Rehab and Spaulding. I have heard great things about both. In the future if you ever need help with teaching to care for Ryan at home, I would be more than willing. Sending positive thoughts your way, Kaleena Bello