TIRR Update

Hello all, 

Mom has been at TIRR now for three and a half weeks and her recovery continues, but at a very slow pace. They originally had set a discharge date of 11/14 but have today moved that back to 11/21, which will hopefully allow Mom to be home by Thanksgiving. 

Mom still has her Trach in and continues to have swallowing difficulties. She can get a few words out with the Trach capped but speech also continues to be very difficult. They will continue to work towards removing the Trach, but this will be dependent on her ability to clear things from her throat which she cannot do now.

Another challenge is the development of a bed sore which will require additional treatment to heal. 

Mom's therapist's are focused hard on improving her posture and head positioning. This led to a series of Phenol injections yesterday into her right and left pectoral muscles in an attempt to relax the muscles and nerves and improve her range of motion. They seemed to have worked, and we now need to concentrate on holding her head upright and begin to improve her overall posture. This is also essential to help her with swallowing and speech. 

As we have seen since her first surgery, these brain stem neurological issues effect so much of what we take for granted, and in Mom's case everything is connected and incredibly challenging. 

The therapist's are also concentrating on her left hand to allow her to open up her fingers and she will be fitted for a hand and arm brace that she will need to wear for a long time. 

The Doctors continue to have hope that she can improve, but we also know that this will take very hard work for a very long time. For this we give thanks to all that continue to send Mom their thoughts and prayers. 

Rachel and John Sedlak

She's made the move to TIRR!

Hello friends and family!

Great news - Mom made the move to TIRR!! Now the hard work begins!! 

She was transferred last Friday and is actively involved in a full schedule of therapy. (Speech, Occupational therapy and Physical therapy) She needs every bit of what they can do with her and we suspect she will be there for 3 to 6 weeks. 

They have put a speaking valve on her Trach and she can get a few words out pretty well. Yesterday she said to me, "Rachel, I love you!" Heart be still! {4 sweet sweet words that I haven't heard from her in a very long time!}

Swallowing is still very difficult and they will work hard on that with her. OT and PT therapists are working hard on her neck and posture and also her left hand. Much hard work ahead, but she seems willing to cooperate well. 

Last week our Aunt Maryellen and cousin Amanda stopped in Houston for a few days, I'll post lots of pictures from their fun visit.

Thanks for stopping by the blog to check on Mom, she's feeling the love!! 

Dr. Kim, Mom and Aunt Maryellen (Dad's sister). 

Gorgeous flowers to Mom from my amazing best friends! {Big hugs to Christina, Jenny, Rebecca, Lindsey and Sydni} They know how to make a girl smile!

Aunt ME and Kelly

Amanda and Me

Mom on the "tilt table" at TIRR. They monitor her blood pressure and oxygen levels at they tilt her body to a standing position. 

Hospital Fun

Having fun at Grandma's Hospital! 

Feel better soon, Grandma!! 

Austin & Papa

A tiara arrangement for our Queen Bee!  

The grandkids job is to keep it light and fluffy around here, and that they CAN DO!! Grandma loves it!! 

Weekend Update

Hello everyone, 

I wanted to give you a quick update on Mom. She was moved to the Neuroscience Intermediate Care Unit at Memorial Hermann on Saturday morning. 

Yesterday was a downturn from first two days which were remarkably good following the major surgery. She was not as alert or responsive and was running a low grade fever. The ataxia that she has had and the severe double vision also continue. New CT Scans were taken yesterday afternoon and also this morning and they were fine and Mom was a bit better today with normal temp and vitals. 

It appears that Mom is experiencing what was expected, that being that Neurosurgery patients go through a period of getting worse before they get better. We know this from what we have been through, but it is still very tough to watch. We also know that this will continue to be a very long process and that we probably won't know for months or longer if the deterioration has been stopped or if Mom can regain any capability. 

The Doctors are still thinking she will get moved to the TIRR rehab Hospital sometime this week! Yay! 

Thank you again for all the texts and calls checking on Mom, it means so much to us! 

Rachel and John Sedlak

John Chris looking for the Metro light rail, his favorite! 

Saying goodbye to Grandma's hospital! (He thinks the hospital scene is "So Much Fun!") Oh to be 3 again!!! 

Day 3 Update

Hello hello, 

Mom continues to show good progress just two days out from her latest brain surgery. Dr. Kim visited this morning and he continues to be very encouraged with how well Mom is doing. He has put in the order to have her moved possibly today to the Neuroscience Intermediate care unit which is on another floor of this massive hospital. To give you a sense of how big it is, Mom's surgery took place in one of 48 operating rooms of which all were occupied during the day Wednesday. Also Mom was in one of 9 Neurosurgical operating suites, again all fully occupied. Apparently Memorial Hermann Hospital does the greatest number of Neurosurgical procedures of any of the 15 other Massive Hospitals here in the Texas Medical Center. 

Mom has continued to have a busy day with Physical and Occupational therapy as well as numerous Doctors visits. She has worked hard with the therapists and they had her 
holding her head almost straight up on her own. Dad describes that he hasn't seen her do that so well in the last six months. Hopefully this removal of additional problems in the brainstem will allow her to achieve a better range of movement and hopefully some independence.

We also had a great visit with Duncan's sister, Dr. Helen Rhodes and her daughter Elizabeth as they got a chance to see Mom going through her therapy paces. Mom seems to have rested better last night and she will probably do even better in the Intermediate Care Unit as it is extremely hard to sleep in the ICU as the Doc's and nurses are constantly coming in to check on things. 

Our next step will likely be the move to TIRR Rehabilitation Hospital sometime next week. Last time we did this drill it took three months to get to TIRR. So we remain quite hopeful that everything will continue to go well. 

Thanks again for all the good thoughts and prayers sent Mom's way. They are working. 

With love,

John and Rachel Sedlak

Mom and Dr. Kim

Helen and Elizabeth stopped by for a visit. 

Working hard in rehab! Go Cathy Go!!

Day 2 Update

Hello friends & family, 

Sorry for the delay in getting an update posted on Mom's condition. It's been a very busy day for Mom with lots of Doctors and Therapists coming to her ICU room. 

First of all, she continues to be very awake and alert and is constantly working to communicate with us through her alphabet board and hand signals. She has been so active that we are begging her to close her eyes and rest, but we think her brain is on overdrive. 

Dr. Kim was in to see her at 10am and again this afternoon and he continues to be thrilled with her recovery to this point. He mentioned to our Dad this morning that he wanted to get physical and occupational therapy started and within ten minutes of him leaving the room the PT and OT therapists came rushing in to start working with Mom. I guess when the boss of the Neuroscience Institute gives an order the staff tends to jump. It's sort of been like this all day. We have also been visited by several rehab Doctors, the speech therapist's and the entire Neuro team as well as administrative staff of the Institute.

Mom was taken off the ventilator last night and she has been breathing fine on her own all day. One of our biggest concerns was her lung capacity and so far she is doing quite well breathing through the new trach. It will probably remain in for a while until she gets more stable. Also the nurses removed her catheter a short while ago and she was able to go on her own with no problem. All good signs!

Throughout the day we have enjoyed getting reacquainted with the Doctors and staff here at the Neuroscience ICU. We spent three weeks here two years ago and everyone is very excited to see how Cathy has responded to this major brain surgery. 

At this point, Dr Kim is thinking that he would like to have Mom moved to the TIRR rehab hospital early next week for an intensive effort to try to get back to where she was in the recovery process about a year and a half ago. The hopes are that with the brainstem malformations removed, she can now make some real progress towards improvement and independence. It is still very early to reach any conclusions, but everyone involved has optimism that things will go better this time around. 

The last two years have been an amazing and frustrating journey and everyone involved with Mom is exhausted, but we have much hard work ahead and will continue to need the prayers and support that everyone has provided to our family. For this we are extremely grateful and feel very blessed. 

Thank you for all the texts, calls and friendly visits today! That's exactly what we needed! 

Our favorite ICU Dr., Dr. Lee

Texas Medical Center

Mom's youngest Prayer Warrior, Austin! 

Mom working hard in rehabilitation on day 2!! Unbelievable!! We are sooo proud! (We waited 2 long months to see this progress last time!)

NSICU

More great news to report this evening! 

Mom was moved up to the  NeuroScience ICU wing a few hours ago where we got to see her and she is doing GREAT! She is COMPLETLY awake from the anesthesia and is very responsive! She is moving her limbs, winking, and answering questions with a thumbs up or thumbs down! If you remember her last brainstem surgery it took her 6 weeks just to wake up, so as you can imagine our family is just thrilled with her initial recovery! 

The next few days is going to be very rough as the brainstem will start to swell, she will become less responsive. Her team keeps reminding us, it will get much worse before she can get better. 

All good news to report tonight, she is stable so we must sleep! Time for us to recharge so we can support her tomorrow! 

Thank you again for all the prayers today, my sweet prayer warriors!! Mom is the ultimate example of one of God's miracles!! Our prayers for a successful surgery were answered! 

Thank you!!