My Brother-- We need prayers more than ever ( very very long) *UPdate 1/5/09-

I am usually a very private person but I have decided to tell my story about my brother..

Here it goes:

In February of this year my brother was having blurring vision in his eye, different than he usually because he has a stigmatism, he went to the opthamalogist...She didn't like what she saw so they did a cat scan.. That cat scan provided the information that would change my brothers life forever...

They found a cyst that was sitting on his optic nerve.. Since my brother is a doctor (pediatrician) he has many colleagues and was sent to the best of the best in Houston where he lives... They all came up with the same dx-- the cyst needs to be removed or he would go blind. So after many consultations- he decided to have the surgery in HOuston-- where he felt comfortable, where he has many colleagues and his life was... Finally on April 3rd he had the craniotomy which ultimately save his sight.. they were not able to get the entire cyst--it was bigger than they thought but he was to recover fully and get back to his practice and do what he love doing being a doctor to children..

We thought that everything had gone well but he developed a fever 2 weeks after the surgery.. He was concerned so he had many bloodtests and scans to make sure this wasn't an after affect of the surgery... All those tests were coming back normal... fast forward 10 days he saw an ID specialist to determine the cause and he wanted himto come overnight to the hospital to do a huge array of tests which he went in for... My parents and I both spoke to him that night when he was in the hospital and his words to both of us" Mom, everything is fine, I was pricked and proded and I will be home tomorrow--That was April 24th...

On the morning of April 25th, at 6 am in the morning I received a phone all from my mother that she had spoken to his girlfriend who didn't here from him so she got worried and got a nurse to tell her he was sent to the ICU ebecause he was unresponsive.... Within an hour we had my mother on a plane to HOuston and I who at the time was 9 months pregnant had to stay with my father who is on 24/7 oxygen and can't fly at the drop of a hat... That day we didn't know if he was going to live or die.. They told us that he had a massive Stroke on the opposite side of his brain as to where the original surgery was and that this is not the side you wnat this to happen-- it affects your speech and you can be paralyzed and you won't know the extent as to what he will have.. He also had to have another surgery to relieve the pressure of the brain and they had to remove part of his skull.. We decided to gothrough with it ..He would have died if we didn't... Oh, the Docs say it has nothing to do with the original surgery

He was in the ICU for 2 weeks and he woke up but he couldn't speak or move his right side.. ( He is a righty)... We were able to get him into TIRR The texas Institute for Rehab and Research top in the nation for stroke.. He has now been there since May- alittle over 3 months...

2 days ago-- the team (who overseas his therapies--OT,PT, SPeech, medical) told my parents that they will no longer be able to keep him at the rehab that he hasn't improved in 3 weeks... This is quite perplexing to us since all of the therapists keep telling us how great he is doing.. They told us he would walk and talk again but it would be a very very long road... So right now we have
2 weeks to figure things out..
We don't know where to begin--in my heart I know he needs to be back in NY but where do we begin in the research...

My parents have been staying at his house and using his car.. He is 34, single ( But has a gf for 10 years---don't ask that is another story in itself) and my parents are not healthy enough to take care of them themselves...

I am besides myself and I have held strong until now but with me here, my mother and father in TExas.. did I mention my father has been rushed to the hospital 2x since they have been down there? It is very hard plus having a newborn and a 3 year old to take caree of.. I don't know how my mother is doing this. My mother also had to miss the birth of her 2nd grndchild..

I will say my brother has a huge network of friends that have been by his side throught the ordeal, and he has a second family of colleaugues that have been there too.. It is amazing to me the outpour of prayers and hope that have come about-- I finally got to fly out to see him in July and while I was there his secretary dropped of over 300 letters from patients wishing him well and my mother says they keep coming.. My brother was very modest abou this life and his work.. Little did we know that he was just voted best Pediatrician in Katy,Texas, He had just become Chief of Pediatrics at a one of the hospitals, and he made his the practice that he started with 5 years ago triple in size... whoever he came in contact with he left an impression.. A prefessor he had in medical school came by to see him because he heard what had happened-- he had not seen him in 8 years since his residency but said he had to come see him..

No one believes this could happen to a pretty much healthy 34 year old and even the surgeon can't believe this happened..

If anyone had any input as to where I should begin, please let me know.. It will be hard because his insurance is out of state..

I have to say someone was looking over him when the stroke happened since he was in the hospital, if he was at his home he would have been alone and would have died..

Also for anyone who has a family member having a surgery that could have any complication-- (brain surgery) make sure you have a poweer of attorney if needed and a healthcare proxy.. Thank goodness my brother had his lawyers make one up for my parents before the first surgery so they are able to take care of his finances... And for some weird reason his financial advisors convinced him to take out additional disability insurance even though it was alot of $$$.. He thought he would never have to use it but thank goodness he has it now.... just some things to think about.. We just wish he would have written down his password to his email... That's the only thing he did not do....

Ok, I feel a little better to write this all down Sorry so long, but it had to be done...

Update 8/20/08: So it looks like my brother has been admitted to the hospital He had a catscan yesterday and they found fluid where the swelling is from the stroke. He had a bleeder on the opposite side of the brain last month which didn't do anything but they thing there was blood that coagulated and blocked veins andarteries that was helping to drain the fluid on the side where the stoke was.. I know confusing.. They are doing more test today and he will probably have to have minor surgery to put a shunt in to help with the draining.. They say it souldn't have been a problem but I worry since they said that with the first surgery..

I know this is a little setback but it could be a blessing in disguise-- my brother was supposed to be D/C from TIRR on Tuesday and we were going to move him to a Skilled nursing facility with a rehab program but now he is going to be admitted to the hospital rehab facility under his neurologist and they said they will keep him their until we find something that best meets his needs...

This is a never ending saga.. I hope their is a light at the end of the tunnel..

UPDATE 8/21/08
Adam had his MRI yesterday morning and my parents got a personal phone call from the neurosurgeon to come to the hospital immediately-we have a serious situation... So, from the MRI they found a huge mass in his front lobal part of the brain. They don't know where it came from since it didn't appear on recent MRI'S so they had to do an emergency biopsy last night.. They were hoping from the biposy they would be able to find out what this thing is. Unfortunately they have no clue-- His DOctor has never seen anything like this and he called in the top Neuropatholigist from his home to come in and he has never seen anything like this. So we are in a waiting game until the biopsies come back.. We are hoping it is an infection and not cancer of some sort ( doctor feels it is not a cancer but he doesn't want to rule it out until the results come back). Adam did well during the surgery and is in ICU now.. PLease keep praying.

I feel like I am on a episode of House. Adam has enough to deal with and now this..


UPdate 9/6/08---- Sorry I haven't posted an update but all of you who are here reading know my father passed away. Here is an update...
THe biopsy of the brain tumor came back. Some good news and bad news--It is a benign tumor. It is called a craniopharigioma. ( the good news).. The bad news is that it is in an inoperable location, it is agressively growing, it is giving him problems with his vision. We are being told that radiation is the best way to go to shrink it but we are now waiting a second opinion fro the real "house" doctor at MD Anderson ( the top cancer hospital in the country above Sloan) to give us his opinion..

My brother also had a shunt put in the day my mother was leaving to come home, to release the fluid where it was building up by the stroke. Since it has been in (a week). He is feeling less pain and is in better spirits.

My mother did tell him before she left about my father. We think he understood. He grabbed my mothers hand hard and says his usual "yeah, yeah" but in the tone of crying.. What we don't know if he really comprehended it. We used a mini cassett recorder during the funeral service so he will be able to hear the wonderful speeches that my cousin, Sdam's best friend (who spokeon behalf of Adam) and my husband spoke.. I can't wait to hear about his reaction...

Keep those prayers coming and I truly am so touched by all of you on here..

9/18/08: Post Hurricane Ike: Our family has so much hearteache lately. We had another blow with hurrican Ike in Houston. I am sure all of you have read in the papers how devestating this hurricane was.. FOr my brother's home- he thank goodness had no damage but was without electricity until yesterday so almost a week. My mother was allowed to stay at the hospital ( they allowed 1 family member per patient to stay there). He has a private room with a pullout.. SO they both weren't alone.. My mother says she can't believe the devastation as she drove home today..

Anyway-- My brother is going to be starting radiation treatment by next week. The docs are confident this is the best way to go for him andthat they will be able to shrink the tumor. He was evaluated to go to the rehab center at Methodist but they felt that going to the skilled Nursing facility at Methodist hospital was the best bet because if he has to miss a therapy session because of the treatments he won't be kicked out of the rehab floor.. He is just waiting for a bed since they have had to give beds to other nursing facility patients who are still without power... LAst week he said to one of the nurses Can I have my pain meds now" we are all shocked since he hasn't really saod a sentence since this all happened.. This gives us hpe that everything is all there but it just has to be worked on. The shunt that was put in is working great and he should soon be able to have the flap put back in... Once all this stuff is finished then and only then we will be able to even thinkof bringing back to NY. Now that my father is gone, my mother knows this is where he should be..

KEep those prayers coming.. SOmething has to go our way for a change...

Update 10/24/08--

Well tomorrow marks the 6 month mark of my brother's journey through life. I can't believe what has transpired throughout the 6 months-- we have had some highs( my beautiful baby, Chloe-being born) and we have had some lows ( my father passing away, Adam being diagnosed with a tumor). My family's lives have been changed but we are hoping now we will only have good things in our life.

I have not posted in a while so I thought I would catch you up. My brother is still in the skilled nursing facility of Methodist hospital. He is ending week 4 of radiation today- 2 more to go. He has become more alert, has started to talk more than he had and is working really hard with PT an OT. The doctors are really happy with his progress. Although they are baby steps he is giving us hope that he will get better. They are going to keep him in the hospital in the SNF until his radiation is finished and he has the skull flap put back. Once that is done we are hoping he will be able to go back to TIRR for more rehab. We want to bring him back to NY but only when he is strong enough and has gotten the most out of everything offered to him in Houston.

Did anyone catch Oprah earlier this week. They had the doctor who suffered a stroke and completely recovered. We actually read the book she published and it gives us all the hope in the world even if it takes years for Adam to get back a life. We know we won't have the Old Adam but hopefully some of him will be here...

We are going to visit him for Thanksgiving ( my husband JAcob and Chloe) and we hope this will further help him in his journey

A couple of interesting things-- The other day, his PT asked him if he spoke Spanish ( and she said it in spanish) and he replied "Si".

He has been standing for long amounts of time with help...

He said to the OT-- " what do you people want."

Lastly, Today is my birthday and he sang the Happy Birthday song me...

Keep the prayers coming, we still need them..


UPDATE 11/18/08---
My brother finished up his radiation for the tumor this past Wednesday. According to his Radiation/Oncologist- clinically he did fantastic during the 6 week radiation period. We have to wait a month to do a MRI so hopefully we will see that the tumor has stopped growing and that it has shrunk... From what my brother is doing know we all tend to think it has worked but we will wait to the actual results..

Yesterday Adam took 6 steps with a little help from the PT. They all couldn't believe it. They are going to keep pushing him so they can bring on the walker..

He also brushed his teeth with his left hand. We hope that will get stronger.

He also has been saying more words and sentences. My mother was feeding him and she fed him to fast and he said " what are you doing". Then she was showing him pics on the internet in the computer room and he said " I want to go to sleep" so she took him back to his room.

So again these are all baby steps... It is like he had a 4 month setback with his tumor and now we are on track to his recovery of his stroke.

He was evaluated the other night to go back to TIRR ( Rehab hospital he was at before) and we think he will get in we are just waiting for the OK's from the Docs. I just hope he is there by the time we get to HOuston next Tuesday. I hope that seeing JAcob and Chloe will lift his spirits and get him more motivated to get back to being Adam..

That is it for now.. Keep those prayers coming, I think it is working..

UPDATE 11/18/08 #2-- Since I wrote earlier, Adam was accepted and moved from he skilled nursing facility at Methodist to TIRR( Texas Institute Rehabilitation and Research). We are so thrilled that he is back there. He can now have intense therapy he should have been having since June. NOw he needs to just want to get better!!!!

Prayers keep them coming!!!


UPDATE 12/10/08----

Sorry, I have not posted in a couple of weeks but being in HOuston for a week and then getting back to my crazy schedule with my kids,I have finally gotten a minute to write an update.

Our trip to HOuston was great and well needed. Besides our emergency landing and cancellation of our flight, we were still able to get on the same flight the next day to Houston. My kids were fantastic. We spent every day at the rehab center for at least 3 hours and JAcob was great. CHloe was good too --- Thankgoodness- the family room had a computer and tv so we were set. We were able to do some sightseeing with my mom- Zoo, Nasa and the children's museum.. ALl places I know my brother would have loved to have been with us. However, Adam looked better than he did when I saw him a in October. He was responsive was talking a little but from what I saw his eyesight was minimal. We don't know how much he is seeing but the tumor could still be shrinking and such. He was great with the kids-- got to hold Chloe. We went to all of his therapies with him and it was amazing to see him do what he is doing.. So all in ALl it was a great trip.

Last week we got some new from his team that his temporary date to leave the rehab will be JAnuary 13th. They are trying to do a lateral move to a rehab center in NY. The one he will be going to is Rusk Instutute in NYC. I know there is Kessler and Burke but for my family this is the best place for him. My mother is by herself now and she doesn't like to drive so this works for us.. Plus his doc at TIRR is the director and she is friendly with the CEO there so they know all about him already... Sometimes it is good to have connections and people help out in many ways that you would never think... We plan to have him home within the next month or so but that can always change depending on his health and if he is stable to fly....

On another note. Adam had his surgery yesterday to have his flap put back. It was a sucess. He is in the ICU until tomorow and will return to the rehab to startup his therapies again. My mother was happy that he looks like "ADAM" again.. It is very weird to see your brother with half of his head sunk in... At least he will look human..

I have to say-- he has come along way since last APril. And with his setback of his tumor we are hoping that putting the bone back will further help in his recovery. All of the docs say that happens when it is done.. Only time will tell..

His favorite thing to do is to do music therapy.. It is wonderful and he sings everything. I will say that he looks btter than many of the people on his floor. I couldn't say that 6 months ago but many of them are worse off than he is...

I want to thank everyone for their thoughts and prayers.. It means so much to me and my family. Having this forum to write stuff down also helps me cope with my crazy life...

Keep those prayers coming and hopefully the next time I post something he will be back in NY..

UPDATE 12/12/08:

I know I posted yesterday but we have just gotten fantastic news: Adam's tumor( craniopheregioma) that came out of nowhere and grew so fast is now completely GONE!!!!!!

His radiologist can not believe for the size and how fast it grow that it is completely gone... There is one little cyst left that they are not concerned because it should die off soon... They have never seen this happen so quick. NOw he doesn't have to have a MRI for 6 months..

Maybe our luck is changing!!!

We are jumping for joy. NOw back to his surgery recovery and stroke recovery..

UPDATE 12/15/08-- AFter jumping for joy about getting phenominal news that the tumor is gone, Adam has taken a turn for the worse. Right now he is in a coma state and we hope he will wake up.

Adam had the flap put back into his head last WEdnesday. According to the docs it went great, he was alert on Thursday back to himself, so we thought by Saturday he would be back at the rehab.. Unfotunately on Friday things started to look bleaker. He was unresponsive and did not open his eyes. The docs took a cat scan and saw air pockets which happens and is very common where the flap of bone was reattatched for that reason he seemed lethargic. They had to vent him to get 100% oxygen so the air pockets would dissipate. IT was NOT because he could not breathe.. Well all day sat he was in this state and then on Sundaymorning they did another CAT Scan.. and found that the air pockets weren't dissipating.. SO they had to put in a needle to thehead to take out the air.. This lead the docs to giving us the biggest decision ever.... He was still in this coma state... These were our 2 options: leave him be and see if he wakes up but we have no clue if there is any further damage or go back into surgery and remove the flap so there would be 0 pressure and 0 airpockets.. but we still wouldn't know if there was too much damage or we would wake up... It really was a tough decision but my mother and I decided to go with the surgery.. If we didn't and he never woke up we would be kicking ourselves why we didn't try. SO yesterday he had the surgery.. granted his surgeon was not on call but came in because he is ADam.. ( wouldn't do it for other pts). He got through the surgery and now we are waiting to see what happens... Will he wake up,?if he does will he be where he wasbefore we did the surgery on WEdnesday or will there be further damage.. I just don't know how someone can sustain so many surgeries to the head...

We are just at or wits end. He was doing so well and now this. Nothing can be easy with my brother but now we have to pray and hope he comes out of it.. I cannot believe how my mother is coping. She has been by herself throughout this and I am not able to be there with her.

Please wake up Adam, we want you to fight this...

That is it for now..Please pray more than ever before...


UPDATE: 01/05/09-- I haven't posted in a while because there is really nothing to report. Adam is still in a coma and in the ICU. He had a tracheotomy the other day to remove the ventillator ( you can't have that in that long just in case of infection) and a peg was placed for nourishment.. BOth those procedures went well...

Please keep those prayers coming. We really need it now..

Message edited 1/5/2009 9:58:54 AM.

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

I'm sorry for all your brother and your family are going through. I hope you can find the best place for him.

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

this hits home.

What exactly do you need to know? I am here to he help after recently having a very similar situation with my brother and elderly parents.

Please let me know what they are suggesting and I will be happy to help.
mssissy can also help. Her DH had a brain injury as the result of an accident. My brother had a brain injury as a result of loss of oxygen.

Re: My Brother-- We need prayers too ( very very long)

Can any of his friends or colleaugues help with the next step?
Can they recommend where he can/should go? Point you in the right direction to the best facilities, the correct people to talk to?

I am so sorry. Many to you and your family!!!

Message edited 8/9/2008 10:04:27 PM.

Re: My Brother-- We need prayers too ( very very long)

Many prayers to you & your family!

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

My God, what a horrible story. You just never know, do you?

Is there anyway you or your parents can speak with his lawyer about bringing him up here? I know DaniRella was researching rehab centers around here...maybe she could give you some info. I know her brother is in Kessler in Jersey right now.

If not, as AP said, can you organize his network of friends to find a place down there?

Either way, lot's of prayers to your family - this is such a terrible ordeal to have to go through.

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

I dont know what to say... but good luck with everything

Re: My Brother-- We need prayers too ( very very long)

I am so sorry to hear about your brother and hope that he begins to improve.

Many

Re: My Brother-- We need prayers too ( very very long)

Thanks for all the well wishes...

He is at a rehab center--TIRR and to stay in a rehab center ( acute care center) according to the team you have to still be progressing to stay there.. He has phenominal insurance with no cap so that isn't the probleem there... THe team is saying he is not progressing enough.. which makes no sense... My parents have a meeting with the team on Thursday and I just want to have a list of questions and places for the social worker to look into... I don't want them to go into this meeting with nothing... They have eto show them that they mean business!!!.. Also since theye told us this last Wed, my brother had a breakthrough and walked 3 steps unassisted and his speech therapist couldn't believe he knew every capital of every state and was doing math equations.. So maybe they will extend his stay 1 more month ( we hope)..

He needs to stay in Texas until he has the operation to put back his flap of skull after the swelling goes down... I think we need a long term care facility that has rehab and skilled nursing.. but not a nursing home where he is the youngest person.. If we can keep him in Texas until then that should give us more time to find a place here..

His friends and colleaugues are working on it but there is not much you can do on a weekend..

I will tell you--it is very hard to get into TIRR, Adam has had 5 different roommates so far and they all waited months to get in.. I can say that he qualified to get in there but I am sure because he is a doctor in the network and because of who he knows he got in so quickly..

There are so many stories of hope and success of getting back to a normal life. SO that is what keeps us going... he has the strength and the age to do it..

His practice is also keeping a spot open for him if and when he can come back to work.. They did not have to do this at all since it is a business.. He knows that but we also know how depressed and fustrated he is right now..

Regarding places here in NY, it would be bests if we find someplace here onLOng island..I know about Kessler but it is in NJ and my parents won't drive everyday there plus there lives are here... They have been in Texas since April...

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

hugs and prayers for your brother & your family

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

I am so sorry I am sending you, your family and your brother many many

I'm not sure if it is the type of facility you are looking for but, when my grandmother had a stroke she went to Burke and it was AMAZING...sadly, she had a similar situation where she wasn't improving to their standards and had to leave

Here is the website -it is in Westchester:
BURKE

Re: My Brother-- We need prayers too ( very very long)

Re: My Brother-- We need prayers too ( very very long)

i am so sorry to hear all this... i have no advice, just many that your brother gets the help he needs to recover.

Re: My Brother-- We need prayers too ( very very long)

I am not sure where you live on Long Island - I saw that an above poster who knows my situation mentioned my name and suggested Kessler.

First, I just want to say how sorry I am that this is happening - I can totally relate to your situation and I understand what you are going through right now... it is awful.

Secondly, I don't think anyone should be giving up on him at this stage of the game. His facility should be able to recognize that this is still "early" in his recovery and that if he is doing what you wrote about above there can definitely be more room more improvement. I can completely recommend Kessler with 100% confidence - they are phenomenal and the difference I have seen in my brother is nothing short of a miracle. (when we were told he wouldn't even LIVE through the first 24 hours)... but in reality, it is a miracle that happened b/c of amazing medical care... and determination.

If your parents can't drive everyday (we can't either and are staying at a local Residence Inn) -- is staying someplace in Jersey an option for them at all?? If not, what about Westchester? There is a place called Helen Hayes there that I have heard good things about. Also, on Long Island, there is St. Charles in Port Jefferson. These are all places we were impressed with but were told that Kessler was the "top"... and it was obvious from looking at it, touring it and speaking w/ their docs.

I hope this helps and I hope, more than anything, that your brother improves to the same quality of life that he had before this horrible bit of misfortune. Do try and stay strong, keep the faith and pray -- I know it is hard.



FM w/ questions any time!!!