Thursday, January 28, 2010

1.28.10 1st Annual 'We Love You Paul Bailey' Fundraiser

We will be holding a fundraiser at Camden Catholic High School in Cherry Hill, NJ on Friday, February 26,2010 from 7pm to midnight. The proceeds of this fundraiser will help offset the costs of Paul's increasing medical bills and the high cost of his medical transport home.

Tickets will be $25.00 and MUST be purchased in ADVANCE of the event. This includes food, DJ, beer and wine. There will also be a silent auction/raffle.

Please send checks with your name and number of tickets to:

Lauren Snyder
1100 Collings Avenue Apt. 3B
Haddon Township, NJ 08107

For information on how you can help or questions, please contact:

Joseph Bailey at 856.952.1045 or bailey@ccgmetamedia.com

or

Lauren Snyder at swimskip20@yahoo.com

If you cannot attend, but would like to donate, please send to:

Paul Bailey Recovery Fund
120 Dutch Rd
Marlton, NJ 08053

Tuesday, January 26, 2010

1.26.10

It has been a while since the last update and this is due to a very slow recovery process that is normal with a brain injury. Paul returned to the rehab center following his surgery and has made some small, but significant improvements. His appetite was extremely poor, he lost a lot of weight and he had a serious infection; however, he has started to eat very small portions, his infection was treated and he continues to recieve nutrition through a feeding tube.

My Mom asked me to thank Kesi, Katherine and Denise for sending the music and chocolate peanut butter cookies. He was very excited about the cookies which made my parents happy because he hadn't been eating much. Due to his brain injury, he is unable to tolerate much noise or conversation, but he will listen to the music for short periods of time and enjoys it.

He has been recieving therapy from a specialist who teaches mobility to people with vision impairments. At this time, Paul cannot see and we do not know if his vision will return.

Paul will be having another brain scan this Thursday to determine the outcome of his surgery. It appears that it was a success at this time. On February 8, they will meet with the main neurosurgeon to determine when he will be cleared to return home. Once he is medically cleared to fly, we will be making plans for his flight home and services. We do not know exactly when this will be yet; however, we hope it will be late February or early March.

If you would like to send packages, my family is requesting that you hold off for now unless they are edible because they have a lot of things to carry back home.

We have set a date for a fundraiser which will be a Beef and Beer at Camden Catholic HS in Cherry Hill, NJ on February 26, 2010. I will be posting more information as I get it, but please save the date and attend if you can.

Today is Paul's birthday. Please continue to keep Paul and my family in your thoughts and prayers.

Much love,

Tara

Friday, January 8, 2010

1.8.10

Paul had an eight hour surgery yesterday to repair the air leak in his brain. There were extensive injuries to the bones in his face and head at the time of the accident and some of the bone could not be recovered. The surgeons grafted, or placed new tissue, at the area of the leak. The tissue was taken from other parts of Paul's own body in the hopes it will grow new tissue with a good blood supply and ultimately repair the leak. The surgeons are pleased with the initial outcome. Now we will wait and hope that the grafting is successful.

Think good thoughts everyone!

Tara & Aunt Meg

Tuesday, December 29, 2009

12.28.09

My parents met with the medical team yesterday. On January 6, Paul will have an MRI to check his optic nerve and to hopefully determine a visual prognosis. The following day, he will have surgery to repair the air leak in his brain. He has to have part of his skull removed and they will be removing some tissue from his thigh to fill the area in his brain. After the procedure, they have to wait for the muscle to shrink before they put the bone back in his head. The doctor has told my parents that he will be able to fly home three weeks after the operation and this is very good news.

Paul is still struggling with a diminished appetite. He does not want to eat much at all and is losing a lot of weight so they will be increasing his PEG tube feeds. He continues to progress with communication. He has been talking about his next surgery and acknowledges that it involves his head, but he does not ask why or what is being done. He is walking well and was able to shave independently with an electric razor. He can also brush his teeth, but still tires very easily and sleeps a lot. We are very please to have recieved this new timeline because we were previously told that it may be another two months before he could return home.

My folks want to again express their gratitude for all of the letters and support.

Tara

Saturday, December 19, 2009

Week of 12.14.09

Paul went back to the Alfred Hospital today to have his left arm cast removed and a CT scan done. My parents had a meeting with the Neurosurgeon who explained the CT scan results which revealed that Paul still has air in the front part of his brain.

My Mom has told me Paul has been very pleasant lately, sleeping well at night, and eating a bit better. My Dad brings him watermelon every morning and he loves it! Today he asked my Dad about how various sports teams were doing. He also talked to Ryan on the phone for a few minutes and that went very well.

On Friday, Paul went for another CTscan and to an Ear, Nose and Throat specialist to determine how this air leak can be fixed. They are hoping to be able to do a procedure through his nose to fill this in. He will not be able to fly home until this is fixed.

My folks are very appreciative of all of the positive thoughts and email they have recieved. Keep it coming!

Tara

Sunday, December 6, 2009

12.6.09

I recieved this email from my mom last night:

HI Tara,
It is the weee hours of the night for you while I am writing this. I'd rather call you but since its so late I can't. The past 2 days have been great for Paul: He has been eating a decent amount of 2 of his meals each day, (along with the tastykakes that Jeff Duvilla sent him)!! They were a big hit with Paul. Butterscotch krimpets and peanut butter tandykakes!! He will eat about 1/2 of one cake after his meal. Then Dad asks him if he knows who sent them and he answers "Jeff". He also says "mmmm good". He has been out of his room and sitting in the lounge here a couple of times now. He stays for about 15 minutes then gets tired and asks to go back to his room. He usually falls right to sleep. It is so nice to see him wanting to do this:) He has been mentioning not being able to see even more often now. We tell him he cant see yet, and he is o.k. He is definitely the same Paul when it comes to shower time, when the nurses try to get him in there he says "no not today , maybe later or tomorrow. This week he will be getting his arm supports off!!! He will be thrilled after this happens.
Oh forgot to tell you , the other night when the nurse was helping him back in bed, he told her he really wanted to sleep in his tent!! He seem disappointed when she told him his tent was not here and that he had to sleep in the bed.
The other day he asked me if you were here....... it came out of no where, we had not mentioned your name. As I thought about it I realized that he has never yet asked us if anyone in particular was there.
The only thing he has done in the past is to acknowledge someone when they came in the room after they introduced themselves.

I am hoping we can find out more info. on when Paul can fly home soon. Kirsten said you need to make your flight arrangements soon. Have to get off now. Love Mom

Saturday, December 5, 2009

12.5.09

Hello everyone, I haven't heard any updates from my parents, but I want to share a note that I recieved from Paul's friend Amy who visited him last weekend:

Hi Tara,
I wanted to send you a note after visiting with Paul last weekend. I haven't had internet access this week but wanted you to know that I had a really promising visit with him on Sunday. I saw him for a bit on Saturday and he knew who I was and we had a brief conversation.

On Sunday night I visited him and we walked down the hall twice and he had extended moments of absolute clarity on what had happened and where we were. He is becoming more aware of the bandages on his arms and is frustrated that no one will remove them. But I think it is also a sign that he is becoming more aware of his body and injuries. I fed him some dinner and gave him a foot rub and he was awake and alert for about 1.5 hours. He made statements that expressed that he was aware of his state. For example, he would say after sitting up for a period of time, "I really feel like hell...my whole body hurts." Also, on our walks, which he was walking very quickly and had a lot of energy, he said "you have no idea what is going through my mind right now...all my thoughts are scattered."

There were also moments where he was truly Paul. He had a banana energy drink that tasted awful. I told him he should really drink it b/c he needs the energy and he said if I taste it and like it he would drink more. :) I didn't like it either.

I thought of you that night and how much you would like to be there with him and I just wanted to tell you this. I hope you get to see him over the holidays and I truly believe, though at times progree is slow, Paul will return to us.

Amy

Tuesday, December 1, 2009

12.1.09

Friends and family:

I have some positive news to spread today. I am learning that this process, much like life, is filled with a lot of ups and downs. Paul is slowly coming out of the amnesia. He seems to be more and more aware every day. My Mom said he had a really good day yesterday. He was not agitated and sat outside with my parents for a short while. He gets tired very quickly, so he can only engage in talking or an activity for about five to ten minutes.

Since many people have been asking me to talk more about the minutiae or small details of Paul's abilities, I will tell you what I know. I was able to get some clarification on his walking ability today. He's been walking down the hall and back with only contact guard or guidance, he does not need physical assistance with walking. As I've mentioned before, some moments he is really alert and aware and others not so much. My Mom said he asked my Dad to take him to the bathroom yesterday and talked to him about the Phillies and the Eagles. He still thinks the Phillies are in the playoffs, but that makes sense as it was around that time that he had the accident. He also talks a lot like he's at work. He'll say things like, "How many kids do we have coming in today?" and he'll say to my parents, "You guys need to leave because I have to go to a team meeting."

A sad note is that he has started to ask about his vision. He knows he can't see, but he doesn't ask why yet. He just says things like, "Mom why are you working in the dark down here?" or "Give me my glasses" or "give me a flashlight, I know I have one in my bag over there" or "turn on the lights." When he does this, the staff told my parents to be honest with him and tell him he can't see right now. When they say that he does not ask why. He has also been perseverating on his arm casts and is difficult to redirect when it comes to this topic. He continuously asks when they will be taken off and at times gets really angry that they are there.

He was medicated last night in order to help him sleep and he seems to be improving with better sleep. He has also started to eat small amounts again.

Tara

Monday, November 30, 2009

11/30/09

To all of our friends and family:

We appreciate all of your thoughts, prayers and kind words. My parents have told me that they have been getting emails that infer that Paul is doing a lot better than he actually is. They asked me to let everyone know that while Paul is making some progress, he has suffered very severe and devastating brain injuries. He may never be the same again. This does not mean we should give up hope, but I need to clarify that I have just been posting what my parents tell me, but I am not there and it is difficult to interpret all of it. Paul still cannot see and is still very disoriented. He has periods where he is oriented; however, that is variable. His friend Amy visited yesterday. I was told that he was alert when she came in and did recognize her voice, knew who she was and hugged her. He was only alert for about five minutes though and then he ran out of gas and went back to sleep.

Having said that, it will be quite some time before we know which of his injuries will be permanent and which may improve. I also want all to know that although he is in “rehab,” this means he is no longer in need of acute hospital care. He has not started the “rehab” process as he still has problems associated with severe traumatic brain injury that are preventing the process from starting such as extreme agitation and sleep/wake cycle disturbances. There is so much that is unknown right now and it is too soon to make any type of prognosis, so we just have to hang tight with what we know at this time and hope for a better future for Paul.

This is a very difficult time for our family and we appreciate all of your prayers and support.

Tara

Thursday, November 26, 2009

11/26/09

Paul has been at the rehab for about a week now. Not much progress has been made so far; they want to give him more time to come out of this PTA state before working with him. He has been sleeping alot and has not been very responsive. My parents met with the rehab team yesterday. They said it could be 18 months before we will know what his permanent functional status and cognitive abilities will be. The plan is for him to fly back to the States when he is medically cleared to leave. My parents will meet with the neurologist on or around December 15 to try to determine when this will be. There is not too much that we know for sure right now except that he has a long, difficult road ahead of him.

Happy Thanksgiving everyone and thank you for all of your support.

Tara

Sunday, November 22, 2009

New Email

My parents are now set up with a new email address. They can be reached at:

kjbailey120@gmail.com

Please continue to send words of encouragement, thoughts and prayers.

Thanks,

Tara

Wednesday, November 18, 2009

New address

Paul has been moved from the hospital and is now at the rehab center!

The address where he can now receive cards and packages is:

Royal Talbot Rehabilitation Center
1 Yarra Boulevard
Kew, VIC Australia
3101

Keep that support coming! Now is when he needs it the most!


- Kesi

Tuesday, November 17, 2009

11/17/09

Paul is now eating a full soft diet. The therapist told my Dad he walked 200 meters; however, that sounds really far (I think it equals 600 feet) and my Dad was not completely sure he got that number right, but it sounds great! He is still in the same place cognitively, but he is supposed to be transferred to the rehab tomorrow where they will be working with him intensively. A couple of people have asked me about his vision and it has not returned yet. They still haven't made a diagnosis or prognosis with his sight. I've also had a few folks ask me about having a fundraiser or beef and beer. My family is going to plan something that will probably take place in January or February. We are currently working on this and I will keep everyone posted on this via the blog.

Tara

Monday, November 16, 2009

11/16/09

Paul started drinking fluids through a straw and is able to eat small diced fruit. He is also sitting upright for short periods of time. He can correctly answer where he is (Australia), who he is, the general time of year and his birthday. He was not able to answer questions like "what do you wear on your feet?" and this may be due to the PTA. They plan to transfer him to a rehab center on Thursday where he will recieve intensive rehabilitation services. I will get the contact information there and add it to the blog ASAP.

Tara

Thursday, November 12, 2009

11/12/09

In the last post I mentioned that Paul had surgery to place the bone back on the front of his skull. I haven't had much to report because he has been sleeping a lot as a result of the sedatives and morphine that were used during the surgery.

He still has symptoms of post-traumatic amnesia (PTA). He is supposed to be evaluated by the rehab center today with the possibility of transferring there on Monday for a minimum of five weeks.

As far as his vision goes, one of the main doctors here thinks he has "Traumatic Optical Neuropathy" which is very rare and occurs in only 1% of brain injury patients. This has not been officially diagnosed yet, but if this is the case, there is a 50% chance of him getting his vision back. He is also scheduled to be seen by an Opthamologist today and after that they plan to do an MRI at some point.

Other than that, his brain scans look normal and good. He has the peg tube back in his stomach and the sodium is somewhat controlled now.

Thank you for your continued thoughts, prayers, kind deeds and good energy...

Tara

Monday, November 9, 2009

11/9/09

Paul just got out of surgery where they successfully placed the bone back on the front of his skull. This was removed so that his brain would have room to swell. We are told that the surgery went well and he just returned to his room. My Dad said the MRI was not done yesterday, but we do not know why at this point. He was able to say who my Mom was by her voice yesterday. Other than that, no other news right now.

Tara

Sunday, November 8, 2009

11/8/09

Paul is having an MRI today to try to determine why he cannot see. His sodium was dangerously high so they had to remove the tube feeding, but I believe it is stable now. I hope to have more of an update by tomorrow.

Thank you for all of your thoughts and prayers...

Tara

Wednesday, November 4, 2009

11/4/09

Paul is awake now and has been frequently moving his arms and legs in the bed almost as if he were climbing. He has also begun to say words and sentences although what he says is not usually coherent.

Currently, his right eye is completely open, but his left remains closed. They do not think he can see right now, but they are hoping this is temporary and due to nerve damage.

Paul is experiencing symptoms related to "post-traumatic amnesia" which we are told include confusion, disorientation, agitation, restlessness, and repitition of words, ideas or actions. It sounds like he is repetitively moving his arms and legs and verbally focused on getting the casts off of his arms as he keeps saying, "I have to get these things off of my arms."

The doctors are anticipating that they will not be able to fly him home for about three months; however, they are beginning to discuss transferring him to a rehab center in Melbourne. We do not know when this will be yet. They are also planning to transfer him to a private room in the hospital to minimize noise which may agitate him in his current state. The doctors say this state of post-traumatic amnesia is normal and should subside at some point.

Tara

Monday, November 2, 2009

11/2/09

Paul is now completely off the sedatives and is breathing on his own. The swelling in his brain has also gone down significantly, and he is occasionally opening one eye and yawning. His is still not fully alert and his responses are variable, but he is once again responding to simple commands and has even added an audible "Mmmhmm" in addition to nodding.
Although we still have to wait and pray for him to continue to improve, everyone is very pleased with the progress he's made so far.

Kesi

Friday, October 30, 2009

10/30/09

The results of the brain scan were normal. I'm not quite sure exactly what that entails other than that normal sounds good. My parents are on their way over to the hospital now as it is morning in Melbourne. I don't have any other news a this time, but I will update everyone as soon as I do.

Tara