Archives
12:03:00 AM EDT
Feeling Hopeful
Dealing with Brain Injruy ( TBI )
When my husband went in for this second surgery, we were both very scared. He shouldn't of had to be there at all, if it was done right the first time. Anyway this surgery was to only last an hour; however one hour turned in to the longest day of my life! I was told that my husband had a problem & that he was un-concious. That only time would tell if he was going to recover. He was on a ventilator, & had tubes coming out of everywhere it was so scary. I slept by his side & wouldn't leave for day's while my family kept my son with them. The Neurologist said that they have ( Coma Scales ) that they have to go by, & that would be the deciding fate of my husband! Three days went by & the Neurologist came in. He said that Darren was un-responsive & he would be back in a week. I worked with my husband every day talking to him playing music & most of all doing Physical therapy with him. During this time Darren was starting to breathe on his own. The week went by & the Doctor came back & saw that Darren was still not responding to anything other then pain. He said it didn't look good & that he had a 0-5% chance of a recovery. Well this was not acceptable to me or Darren's mother. We fought like crazy people for second opinions & to give Darren the benifit of the doubt as know one really knew what happend to Darren. By week two he was off the ventilator which was great! I continued to do therapies with Darren to keep him stimulated & help him to re-gain anything he could. I did re-search for brain injury facilities. The strange thing is that for TBI- ( Tramatic Brain Injury ) there are only 16 places in the USA that are available to us! I thought that was an awful statistic. However lucky for us two of these places were here in New Jersey. I had Darren evaluated for both Kessler institute & JFK Rehab. I turned it over to God and let what ever was going to be the best for him happen. During this time I was making the nursing staff get Darren out of bed & I was with him Day & Night stimulating him on all five senses! I gave him tastes of different things he liked & dis-liked to get a reaction which I did, however the doctors said that wasn't good enough it could just be reflex. We did music therapy & sight therapy & touch as well as smell. At week 6 -7 Darren was differenciating his Left from Right side. The nurses were shocked & that is how we won against the insurance company to get him into a TBI facility instead of a Nursing home, which is what they wanted to do with Darren since he was " un- responsive "!!
This was to be the best move for Darren! We moved him to JFK in Edison New Jersey. This is one of the best facilities for Brain injury patients! Darren was in the Acute hospital setting for 6 weeks before he moved to the rehab program 2 miles away. Darren had some medical issues to overcome such as: Pneumonia & Brain storming. Brain storming is high fevers that occur due to the fact that your Thalamus is not regulating properly in your brain. The Thalamus is our ( Body Thermostat ) which regulates our temp. Darren was getting fevers as high as 105! This was very scary for us however it was to be explained to us that they still treat it as if you or I had a 105 temp which is fatal, however since his is not regulating normal due to his injury that it in fact was off it probably was lower around 102-103 which is still very high & inhibits you from wanting to respond even if you can! Darren also has a Tracheostomy & a Gtube for feeding at this time. Because of the Trache he can very easily get Pneumonia since he is breathing straight air & it is not being filterd as yours & mine through are nose hair or our mouth. We are able to plug his trache & he tolerates it well. He is also trying to talk. He is responding at this time & is still able to differenciate his Left from Right Side which is fantastic. So Darren has moved from Coma, to Vegitative State, to Intermittantly concious. The next step is Concious! They have thier own Coma Recovery Scale ( CRS ) that they use with Darren to see if infact he is eliciting purposeful behavior. At this point he is infact following basic commands but remains inconsistant. However with brain injury it is to be expected that your recovery is a very slow process as well as inconsistant. One week you could be following commands 3 out of 4 times & the next day you could only do one or none. That doesn't mean that you are not able to do it, it just means that with any or all injury you have your good days & bad! Darren & I as well as his Mother are fighting to help Darren every day! My sister is there with us too! We see his every stride to get well! He needs all the Love & Support that he can get to know that he is not Alone & we are always here for him! It is very important that he know's that he has support. It will give him the push he needs to try to pull through. There is so much that goes with brain injury & the recovery however I just wanted to give a brief synopsis as to what we have been going through & point out links for facilities and research that is being done for this. In hopes that if someone needs to find it they can! I started with nothing not knowing a thing, I did so much research & was lucky enough to find some real nice Doctors in California via the internet site I have found that put me on the right track for Darren. I will update this from time to time. Email me if you would like to know more or have any questions!
Just a quick update: Today is Wednesday October 6th 2004. Darren is 10 1/2 months post injury. He received a Backlofen pump on 8/9/04 & since then has been able to show more responses. Darren wasn't doing much for a while but now he is jumping small hurdels. He is at this time 50% accurate on command following & is aware of things going on around him. We are still not clear as too how much vision he does or doesn't have but if you ask him to turn his head to the right or left he does it. Also if he hears you walk in he will turn his heard right to you! He is also trying so hard to talk!! You just have to see the facial expressions!! This is a Great big accomplishment for Darren!He can do other things too but I just wanted to update to give others hope, as I was told My husband would never do anything ever!!! His Mother & I will NEVER GIVE UP!!!!!!!! I will update again as more progress comes!! Email if you have any questions! Thanks....
10/27/04-- Today is our first Wedding Anniversary. Darren gave me the best gift ever, he said " Hi & Ok " he also has been answering ( Yes & No ) questions with an " Uh-Huh or Uh-Uh. I just continue to keep the faith & pray all the time & Darren is slowley but surely coming around! Darren's Trache was taken out 2 weeks ago & they put a small piece in to hold the hole open incase he needed it. However he is doing fantastic & that piece will be removed next week for good!! Thank GOD! Darren still has a very long road ahead of him, however I feel he will do very well. He show's such signs of emotion now more then ever. He gets real angry quick because he can't say what he want's to. But with the aggressive therapy in speech & PT & OT he is definately making progress! I am so proud of my husband, as he has such a hard fight & is constantly batteling to get his life back as he knew it. I don't know for sure if he will ever obtain his life back 100%, however I do know that he is shocking Doctors with his progress thus far. I will update with more good news as it happens. Thank's!
Written by njdolfin Blog about this entry |
Add to del.icio.us | 
digg this
-
Our family is currently going through a similar experience. My brother was injured in an ATV accident on September 18th. He was in a full coma and totally non-responsive for 12 days. He finally opened his eyes and was in a vegatative state for and additional 19 days. We too, were told by the doctors (three different ones) that he was non-responsive and would never regain conscienceness and would be bed-ridden the rest of his life. We were also told that the infections would eventually overcome him and they were considering putting him in hospice. We, like you did not except that. We saw things that the doctors wrote off as reflex (yawning, looking at you when you talk to him, squeezing your hand, etc.). Everyday several of his family members and friends would visit him in ICU and talk to him as if he were awake. We also played his favorite music.
After 31 days in ICU and several bouts with the pnemonia, he was still on the vent and transferred to a skilled nursing facility. Believe it or not as soon as he got there the respiratory therapist was laying the law down to him about touching his trach and asked him if he understood and he shook his head yes. That was last Wednesday. He is now off of the vent and they are removing the trach on Monday. He talks in full sentences and can walk a little ways with assistance. He still has a long road ahead of him to recovery, but his outlook is good. NEVER EVER GIVE UP HOPE AND NEVER BELIEVE WHAT THE DOCTORS TELL YOU.
He still has a long way to go, but -
Thank you for the kind words! To answer your?,I have found the nursing staff at JFK to be excellent! I was wondering, I know you said that due to privacy you couldn't go into your story with your friend. Is there anything you can share about her situation? Also are you fimiliar with JFK? Is that where your loved one is or was? Darren is still following commands ( Basic ) & is starting to get alittle more consistant, as well as he is still trying to talk & we are occasionally hearing actual words which is wonderful! It is a slow & long process however God is leading me through it & Darren is making progress! I just pray he continues to beat the odds & is able to eventually come home & have a good quality of life. I don;t want him to have to spend the rest of his life in a hospital. Well thank you again for reading my journal & the kind words you shared. God Bless!
-
You're testimony is very close to my heart as we are dealing with a VERY similar situation with a long time friend. I can't give you any details because of privacy but want to encourage you! She has come way farther than any initial evaluation would have indicated. You are a blessing! Never give up hope...believe that God led your search to find the right place for Darren...I pray he is doing well. God is in the miracle business. If you don't mind, I do have a ? ...have you found the nursing staff at JFK to be as wonderful as the therapists and physiatrists? Its been a month since you posted your testimonial, how is Darren now?
I pray that God will continue to bless you and encourage you, comfort you and most of all keep directing your path and that he will give you strength when you feel you have none left.
mdrn
9/19/08 12:02 AM
Thank you for sharing your story. My family is going through a very similar situation. My father had a heart attack on May 14,2008 which led to hypoxic injury while waiting for the ambulance. I hope you don't mind my asking, but how is your husband? I noticed you hadn't written in your blog in awhile. I found great comfort in reading your story, just to know there is someone out there who understands what we are going through. My Mom and I are each others pillars of strength, but it is still such a scary and life changing event. I admire and respect your devotion and will pray for you and your family.
Sincerely,
Michelle in Ohio
Karasara2@aol.com