Brett's Recovery

Dear Friends of Brett,

So sorry to have missed writing lately. Things have been slow and tedious and frustrating during Brett’s recovery from the March 4 free flap surgery. I think the 11 hours of anesthesia coupled with multiple wound healing has really kicked Brett’s butt…for now. He continues to work hard but quite often, exhaustion gets the better of him. We were able to enlist the help of Rehab Without Walls once again and were lucky enough to get our old rehab team of Ron (PT), Vicky (ST), and Lorraine (OT) to work with us once again. A couple of weeks ago, Brett was hospitalized for an infection for 3 days. We were never able to determine the source of the infection but antibiotics seem to have taken care of it.

Today Brett was released from the hospital. He really wanted to be back at home. I am now assuming roles as nurse, rehab therapist, and care giver. I’m not so sure I was ready to come home yet but here we are. Brett is still quite weak from the surgery and anesthesia so moving around with part of his brain unprotected by bone feels very precarious. I was expecting this. However, I was less prepared for my new wound care responsibilities.

Brett has three major wounds, each requiring their own special treatments. His thigh wound was the donor sight for his skin graft. It is still pretty bloody and needs a change of bandage twice a day. This involves unwrapping his current bandage - the worst part because it sticks to the wound and hurts as it is removed. Basically, he has a gauze wrapping that circles around the length of his thigh and this is covered by a loosely wrapped ace bandage. Under it all is a material that stays on the wound to be changed by the docs only (thank goodness). This job is pretty messy and the most time consuming of my wound care tasks. I’m understanding a bit more about hospital setups for performing these types of procedures.

Then there is his back wound. It is stapled closed and looks pretty good (although quite long) but there are two drains coming out of the base of the incision. I get to empty those drains twice daily and record the output. It is my science fair type of task since it encompasses the recording of data.

Finally, I address the head wound. I mix a solution of saline and hydrogen peroxide and q-tip around the edges of Brett’s skin graft. Then he gets a new dressing of zero form that is draped over his skin graft. All of this currently takes me about an hour to accomplish. I’m hoping to shave some time off of this tomorrow.

I’m also attempting to turn over some of my rehab therapy tasks. Today, Ron, our PT from Rehab Without Walls, did an evaluation of Brett. Hopefully, our insurance will cover some more at-home rehab since it has become nearly impossible to do outpatient rehabilitation at this time. If we get this approved, it will be a big relief.

In the meantime, Brett needs lots of rest. His body now has so much healing to do and I think it’s exhausting. We’re trying to feed him healthy foods and encourage lots of naps. He is still feeling a bit down because he feels like he is moving backward. I keep reassuring him that it’s just temporary.

Brett did great through the initial 48 hours post surgery. The veins on his head that were surgically connected have stayed open allowing the muscle to have vascular support which bodes well for the skin up there. His wounds are healing slowly but surely. Late Wednesday night Brett left the ICU and he is now in a plastic surgery recovery ward. He started some physical therapy yesterday and did a very short walk and spent some time sitting up in a chair. He continued with this today with a bit of a longer walk up and down the hallway. It is exhausting but he is working hard as usual.

He is returning to his partial skull look of the past with an extra large lump off of the right side of his head. Also, they gave him quite the interesting haircut in the operating room. I can’t figure out the partial shaving of the head when these guys are doing surgery. My understanding is that women generally don’t like having all of their hair shaved off. I guess they do comb overs?

Yesterday was a bit depressing for Brett. He doesn’t like moving backwards. Everyone reassures him that it is just a temporary setback but it feels overwhelming. Also, we are facing a problem with his brain being unprotected by a bone and not being able to wear a helmet because of the head surgery and skin graft. He wants to get back to being active as soon as he can so we are trying to work out the intricacies of how this will work safely. Our main safety concerns right now are that Brett wakes up very disoriented and that is when his potential for falls is highest. He is getting lots of lectures about how to be safe but we still worry because his tendency is to try to get up before he is thinking clearly. Right now he is not at full strength so this is definitely problematic.

It is looking like Brett will remain in the hospital at least until Monday - hopefully not much longer. Kyle arrives home on Sunday night for spring break and we are excited about his return. All in all, we are hanging in there and focusing on healing.

Just a short note to let everyone know that Brett is out of surgery. It lasted basically 11 hours. He is now in the Neuro ICU and doing well. He had a nice conversation with Chris, Mike, and I assuring us that he is ok. He is not in any pain and feels pretty good. Now he is snoozing. The next 48 hours will be crucial. The muscle that was removed from his back was attached to his head with some blood vessels that will supply circulation to the muscle and skin. It is important to make sure those blood vessels stay open and working so he is checked hourly to make sure the blood is flowing. Also, he is being closely watched for any signs of infection. Those are our two biggest concerns for the moment. After the first 48 hours, the chances that something will go wrong decrease dramatically. Let’s keep our fingers crossed that all goes well.

As many of you know Brett’s recovery has been going along nicely and the progress he has made in the last month has been strong and steady. He is racking up the miles with his walks and improving cognitively every week. We had a small setback on Valentine’s Day when a tear in Brett’s skin (on his head) opened up. The surgery on Jan 17 caused a rip in his skin in addition to the surgical incision. It seemed to be healing but on Valentine’s Day he woke up to a gap in his skin that was open to his implant. The skin had separated at the edge of the scab where the tear was located. Fortunately, we had a scheduled appointment with Dr. Harris, his neurosurgeon, that afternoon. There was a great deal of concern about the opening due to the possibility of infection of Brett’s bone implant. We ended up doing an emergency procedure (in the ER) to thoroughly clean the wound and stitch it closed. He was required to spend a couple of nights at Stanford Hospital to receive IV antibiotics and we headed home on Saturday. At that time we noticed that a patch of skin high on Brett’s forehead was looking very thin. We returned home, continued with rehab and all seemed to be well.

On Tuesday, Feb 26, we woke to what seemed like another small problem. When Brett pulled on his shirt in the morning some fluid was leaking from the area of weak skin on his head. We had been watching this patch of skin closely and recognized that there was a potential problem at that site. Clearly, there was another opening, albeit tiny, so we immediately made an appointment to see Dr Li, Brett’s other neurosurgeon. He was referred to a plastic surgeon with an appointment for the following day. Yesterday we met with Dr Wan. It ended up being a shocking and devastating meeting. Because this area of skin is basically not thriving, a skin flap surgical procedure is required to protect Brett’s head. This is a pretty intense operation where a section of muscle (from Brett’s lat muscle) will be removed and attached to the healthy skin on his head. Then a skin graft from his thigh will go on top of that. In addition to all of this, the skull implant will be removed because there is a distinct possibility that the bone flap may be infected which could lead to serious complications.

The surgery is scheduled for Monday. It will be 5+ hours and Brett will spend at least another week at Stanford Hospital with several days in the ICU. We are hoping that everything will heal quickly and perfectly and then in a couple of months the bone flap will be replaced yet again with a new, sterile implant. We are feeling a bit deflated right now but are working hard at preparing mentally and physically for this next ordeal. Brett’s spirits are good.

I was explaining to our dear friend, Marianne, that this feels like we have been running a marathon and we were in the last 5 miles of the race but now the rules are changed and we are told that we will be running an additional 26 miles before we finish. It is overwhelming for the moment. We hope that we will regain our pace (after the initial panic) and carry on with the race.

Please keep Brett in your thoughts and prayers as he continues his journey to recovery.

Yesterday Brett had his IVC filter removed. This is a filter that was placed in his vena cava to prevent a blood clot from going to Brett’s lungs (pulmonary embolism) while he was immobile. Because he is now quite mobile, it is no longer necessary. The surgery went off with out a hitch and we were at the hospital at 10 am and home by 2 pm. He was only slightly drugged for the procedure so we don’t need to deal with the after-effects of full on anesthesia. We are glad to have another hospital event out of the way.

On Monday Brett’s staples were removed from the cranioplasty that took place on January 17th. I counted 63. They came out easily and he was finished in less than 10 minutes. His wound is healing beautifully and, once again, he has a nice, oval head. The surgery took more of a toll on Brett than we had expected requiring a fairly long period of recovery. I believe that he was simply overwhelmingly tired. After about a week and a half, Brett’s energy returned and he has been making great strides in progress both physically and cognitively. On Tuesday he was able to accomplish his goal of walking from our home to Coupa Cafe, a journey of 1.3 miles…so happy to check that one off of the list. His next goal is to walk “the dish.”

This will be our final week with Rehab Without Walls - our in-home rehabilitation team. They have been a great help to us and we are sad to see them go. Thank you to our wonderful team of Vicki, Lorraine, Ron, Nancy, and Ann. We wouldn’t be where we are without your expertise and caring. Next week we move on to outpatient rehab at Stanford.

If you would like, please come to visit Brett or make a date with him. He loves all of your company. Thank you all so much for your friendship, love, and caring.

Brett went into surgery at 3:40 to have the bone flap replaced.  He was out in just over an hour and the surgeons reported a relatively uneventful procedure.  Brett was under general anesthesia and we are currently (5:40) waiting for him to wake up.  

Brett is on schedule to be home tomorrow.  He will need to take it easy for a few days as he recovers from the surgery.  He will have a shaved head and a neat array of titanium staples for a few weeks, but with the new PEEK flap in place, he will no longer need the helmet and will be able to stretch his walks a bit further.

The recovery is a miracle.  It is far from over, but much further along than we could have ever hoped for.  Brett will be awake soon, and we have no doubt that he will be back on Facebook tomorrow.

http://allthingsd.com/20130115/as-he-preps-for-skull-surgery-this-week-brett-bullington-talks-about-his-brain-injury-and-social-media-medicine/

Brett continues to show remarkable progress. While still shaky on his feet, he is becoming stronger. Lots of work is being done on balance and stretching. Surely he would be unable to pass a drunk test in spite of his current sober state. Brett will not be drinking for the next couple of years due to seizure risk which increases with the use of alcohol. Work on flexibility and balance greatly improves the form of Brett’s walking and makes walking with him feel much safer. The emphasis is on quality and gains in correct muscle memory rather than quantity or endurance. Brett has some big goals for walking - downtown to Coupa or the dish with his daughter, Brooke. It will happen (and soon) but for now our neighborhood walks with head up and shoulders tall and no stumbles suffice and will lead to those bigger journeys.

The past week has shown more progress in cognitive areas too. Many tests and exercises show increases in attention, focus and memory. Brett was able to get many answers correct in the testing he experienced this past week, however, the speed involved is a bit slower than one would imagine. It’s good to see the brain firing but getting things up to speed will take time and practice. The tasks Brett is working on have become more complicated as the sophistication of his thinking begins to return. He is required to do things like recite up to five numbers forwards, backwards, and then to report the sum of said numbers. He was getting it! Many of his assignments required shifting attention between multiple tasks. With occasional reminders, he was able to shift. We take skills like this for granted - things that we do everyday and often with ease. It’s amazing when you think about all of the things in life that your brain is constantly attending to - simultaneously.

Brett is also working on doing everything around the house in a way that is safe and we are working hard to keep incorporating his left hand. We encourage use of that hand in as many activities as possible. It is easy to turn normally two handed activities into right handed activities but reminders keep that left hand firing. Two handed catching and left handed throwing help with regaining coordination. Unclipping and clipping clothespins, turning nuts and bolts, and searching for everyday items in containers of rice with the left hand while eyes are closed and then identifying the items are exercises that Brett works on.

While all of the rehab is helping Brett to make great progress, we cannot underestimate the value of sleep and rest. It is now proven that down time is very important to the recovery of TBI. We pay lots of attention to Brett’s energy levels and encourage naps and long nights of sleep. The progress he is making is so encouraging.

Thank you to everyone who has visited. It makes Brett so joyous and thankful and helps him to make even more progress. Unfortunately, we need to keep things fairly quiet so if we haven’t seen you yet please be patient. We want you to visit and will see you very soon. We have a crazy week coming up with 4 doctors appointments 8 therapy appointments. Forget about Christmas shopping. If you emailed me about a visit and I haven’t gotten back to you, please bear with me. I will contact you soon. You are all so important to us.

Wow. We are filled with joy. Yesterday Brett returned home. He is doing incredibly well although he still looks a bit odd with his triangle shaped head. We are being very cautious about the safety of Brett’s brain and he is required to wear his helmet whenever he gets up.

The three Ts are still a big part of Brett’s daily life - occupational, physical and speech therapy. We are now working with Rehab Without Walls. They come to our home and help Brett in the home and the community to become reoriented with life. Brett seems to be making cognitive gains daily. His memory, attention, and focus are improving and with help we are hoping to make small but consistent gains in this arena. He is still limited in the use of his left hand - especially the fine motor skills. He will use it if we hover and make demands but he definitely prefers to use his right hand in most situations. I received some recommendations about constraint therapy as a potential treatment fo his LUE (left upper extremity) issues and have asked some therapists for their opinions. Brett seems to be a good candidate for this. It would involve constraining his good hand and forcing the use of the left - brutal but potentially effective. If anyone has knowledge or personal experience with this, please let us know. Brett’s walking, strength, and balance are also on the mend and he has regained some weight. This is a big plus with the impending surgery to replace his missing bone flap (the piece of skull that was removed in his original trauma surgery). Brett is walking more evenly now after some work on balance, however, use of a cane is still recommended until he can stand strongly on each leg for 30 seconds or more. Brett does not like using the cane but it is a necessity for any significant walking.

We just wanted to take this opportunity to thank our team at Santa Clara - Dr. Huang, Dr Dutton, Emmanuel, Deb, Michele, Trang, the many other nurses, HSAs, and rehab therapists who aided us along the way. You all helped Brett make great progress and you do amazing work - thank you for choosing to do what you do. We wouldn’t be where we are today without you. We also wish the best to all of the other SCVMC rehab patients - may you all continue in your recoveries.

Now that we are home please let us know if you would like to visit. Email dbullington@gmail.com to arrange a time to stop by. Brett enjoys company and realizes the importance of friendships in his recovery.

Tomorrow Brett will work hard with long sessions of both occupational and physical therapy. The journey continues.