The Road to Recovery - week 2

Your present circumstances don't determine where you can go; they merely determine where you start.

Alysha update August 6/12

Restless.

     Alysha had some time again today off the mechanical ventilator for breathing practice. This is part of a planned breathing work-out, which is part of her care plan. Over the past 3 days Alysha has had additional breathing workouts when the mechanical ventilation tube accidentally detaches from the airway in her neck. Apparently the tube fits loosely over the airway in her neck and easily detaches when Alysha moves her head.  It has been unnerving for family to watch the ventilator accidentally detach from Alysha. The medical staff have worked to tighten up the connection between the ventilator and Alysha.  

     Alysha was restless last night and today. According to Lisa and Rich she is keeping her eyes closed but she is moving and squirming a lot, and her face looks like she is in pain.  The family has some concerns that Alysha isn't being appropriately medicated to relieve her post surgical pain and the pain and discomfort related to her resuscitation (2 wks ago), the recent tracheotomy and countless procedures, suctioning, catheters, IV lines, dialysis and physiotherapy.  

     They attempted dialysis today but had to discontinue it after 2 hours as they were having trouble with her blood clotting. Dialysis seems to be occurring infrequently and the family has concerns about this as well. 

     Visitors today included, Carolyn, Ron, Lisa, Rich, Jason and Aashish. Grandpa Wilbert and Grandma Pierrette had one last visit with Alysha before they flew back home to New Brunswick today. They plan to return in the fall to see their grand-daughter. Justin, Lisa and Rich slept at home last night for the first time in almost 2 weeks. Since Alysha's status seems to be more stable, Justin stayed at home today to recharge and reconnect with his life and responsibilities. He has been a devoted brother, and a reliable support for Alysha, staying by her side every day since her surgery while her life was so fragile and unstable.

Justin & Alysha

Alysha update August 5/12
Off mechanical ventilation for practice.

Today, Alysha's condition remained stable. They took Alysha off mechanical ventilation this afternoon for 2 hours as practice to build up her breathing strength. 

This morning when Auntie Michelle and Nan (Jeanne) visited her she showed some emotion. While Michelle and Jeanne were talking, Alysha started a soundless (because of the tracheotomy) sobbing, with chest heaving and tears. Later, during a visit with Justin, he asked her to lean forward so he could kiss her on the cheek and she did tip her head off the pillow to receive the kiss. Justin also requested she open her eyes and look at him, - which she did and then he and aunty shell asked her to look at Aunty and she did look in that direction.  The medical staff suggested that the movements and emotion may have been involuntary, and random but the family feel strongly that Alysha was communicating with them through movement and emotion.

Visitors today include Grandpa Wilbert and Grandma Pierrette, Auntie Michelle and Nana (Jeanne), Lisa's cousin Vanessa and her husband Ryan, and Rich's uncle Chris and aunt Cindy. Aashish, Ron, Carolyn, Justin, Lisa and Rich.

Alysha and Grandpa Wilbert

Alysha update August 4/12

A big smile

This morning Justin and Lisa went in to see Alysha. Justin greeted Alysha and asked her to open her eyes which she didn't do but she did give him a big smile instead. She later gave a smile to Chrissy and Jason. Other than these smiles Alysha was really non-responsive today.

Alysha is dealing presently with an infection that is affecting her entire body. They have taken all the IV's and catheters out because these locations are particularly susceptible to the infection. She is very medicated to keep her comfortable as she recovers from yesterday's procedures and the infection from today. Visitors and the staff working directly with Alysha are wearing infection control gowns and gloves.

Visitors today included Rich's Friend Edd, Jay and Chrissy, Ron and Carolyn, Wilbert and Pierrette.

Alysha update August 3/12

Tracheotomy and PICC line.

Today, Alysha's condition has been stable. She has been opening her eyes a little bit for much of the afternoon, except for when uncle Jason talks to her and then she opens them a lot. Alysha's blood pressure has been, "behaving," today.

This morning they performed a tracheotomy for Alysha at her bedside in the ICU.  A tracheotomy is a surgical procedure which consists of making a cut on the front of the neck, and opening a direct airway through an incision in the trachea (wind pipe).  This is a more comfortable way to provide ongoing mechanical ventilation for Alysha. Now when she turns her head the movement won't trigger her gag reflex. Lisa reports that Alysha looks so much more comfortable now. They also inserted a PICC line. A PICC line is a Peripherally Inserted Central Catheter that is a form of intravenous access that can be used for a prolonged period of time. With the PICC line in place, they were able to remove the catheter from the infected site on her neck and one of the IV lines in her arm. She is also undergoing dialysis today as her kidneys are not producing much urine. Alysha still has a tube in her nose that goes to her stomach (nasogastric tube) through which the staff can feed her.

A special visitor flew in today from New Brunswick. Grandpa Wilbert's wife Grandma Pierrette. Encouraged by Alysha's stable condition and supported by the nursing staff, Lisa and Rich are going to try spending the night out of the hospital at Jason and Chrissy's house in Brampton. Justin has been sleeping at a hotel in Toronto with his Dad and Grampa for the past few days since he dislocated his shoulder trying to sleep on chairs in the waiting room.

Alysha update August 2/12

A day of setbacks

Today Alysha has developed a lung infection. The infection is presently limited to the lower portion of her left lung. There is also an intervenous site on her neck that has a localized infection. She is on medication for both of these infections. Her oxygen is back up to 70% and the medical staff are needing to suction her lungs more frequently. Alysha was restless and looked either uncomfortable or frustrated. The doctors sedated her with medicine so she is once again non-responsive. In an effort to make Alysha more comfortable and reduce the risk of further infection, they are considering doing a tracheotomy in the next couple of days.

A few days ago we were excited when the physiotherapist requested Alysha squeeze her hand and she did so.  Today however, the family was told that Alysha hasn't progressed as they would have expected. At this point Alysha should be able to raise two fingers in response to a request to do so. An inability to respond to requests such as these has the doctors thinking there is quite a lot of brain damage. We wait and see and we hope for the best.

Alysha update August 1/12

High Blood pressure

Alysha's blood pressure has continued to be abnormally high. The doctors have given her medication to lower her blood pressure. Family and medical staff have been trying to reduce stimulation for Alysha. When we went to see her we just held her hand. We didn't rub her arm or ask her to open her eyes or make any movements for us. Alysha was continuing to open her eyes and turn her head in the direction of her visitors. Unfortunately, when she turns her head, her breathing tube triggers her gag reflex and the resultant gagging looks uncomfortable for her. Visitors to the hospital today included Michelle, Jeanne, Paul, Alex, Kahlan, Claudette, Pauline, Alyssa, Debbie, Robyn, and Debbie's mom, Abby and I.   The regulars at the hospital are Lisa, Rich, Justin, Ron, Wilbert and Aashish.

Abigail, Alysha & Kahlan 

Alysha update July 31/12  5:00 pm

No longer in a coma!

This afternoon Lisa was told that Alysha is officially no longer in a coma. Over the course of the day, Alysha has been opening her eyes and making many purposful/ meaningful movements. The most important one was an attempt by Alysha to reach and remove her breathing tube with her left arm. Our determined girl was sweating and red in the face with the effort of her quest to remove the tube. The tube however needs to stay in place until we know she can breathe continuously on her own. She is not in a coma any more however she is not ready to fully wake up. 

A physical therapist was in today and worked with Alysha. Alysha made many attempts to open her eyes. When tested with a light, she can follow or track the light with her eyes. Also, her pupils of both eyes respond to light by dilating and constricting appropriately. Alysha purposefully squeezed her hand in response to the therapist's request for her to do so. She is able to follow these verbal instructions, so we are assuming she is hearing and understanding language and can translate that into movement.  Her kidneys are continuing to produce a little urine. She is on dialysis again today. After an exhausting day of work with the therapist, Alysha's blood pressure escalated to a point where they gave her medications to decrease it back to a normal level. 

"Hope is the thing with feathers that perches in the soul." (Emily Dickinson)

The Road to Recovery - week 1

The soul would have no rainbow had the eyes no tears.

Alysha update July 30/12  6:30 pm

Stay positive - Stay strong.

Today Alysha tipped her head forward and opened her eyes for 20 seconds, looking first at her Uncle Jason and then at her grampa Wilbert.  This caused much excitement among the family and visitors. Another piece of good news is that Alysha's kidneys are turning out a small amount of urine again. She is having dialysis again today.  

Today the Doctor reviewed some recovery possibilities with Lisa, Rich, Ron, Wilbert, Jason and Justin. The MRI shows that one part of Alysha's brain that is affected is the part that controls her vision.  They think Alysha can see, they are just not sure how much she can see. It is possible her motor control is affected and she will need to re-learn the basic human functions as well as learning how to walk and talk. If she still needs ongoing mechanical ventilation support, next week they are considering a tracheotomy. When the doctors talk about Alysha's recovery they use vague expressions like, "for a long time," and  "for a while," but they won't define what units of time that expression might refer to. Lisa's message to everyone is stay positive - stay strong. 

Alysha update July 30/12 at 8:00 am

MRI

Report from Lisa this morning....Alysha had an MRI last night at midnight. It went well and Alysha had a good night.  Alysha's supplemental oxygen by ventilator is back up to 40%.  The nurses say that there has been movement but not on command.  They think they will be doing dialysis today but that won't be confirmed until later this morning.

Alysha update July 29/12 at 8:00 pm

More Movement.

Many more reports of movement today. Alysha is wiggling her lips for Lisa and various visitors and she tried to open her eyes for Rich. Lisa has been told to speak more assertively to Alysha to be rewarded with movement. If you talk to her in a soft, soothing, lilty voice you are not guaranteed a response. Apparently she just gets mad when Justin is in and she won't move anything for him...Ahh siblings - some things never change!  Supplemental oxygen by the ventilator is down to 30 percent. Her kidneys are still not working today but the medical staff maintain that the kidneys will likely repair themselves. 

Visitors today included Jeanne, Michelle, Ron's dad. Eric and Cathy, Paul and Denise. Aashish, Jason and Chrissy and Abby in addition to the usual, Lisa, Rich, Justin and Ron. Visitation was limited today because of other patients in the ICU. Almost everyone who came down got to see Alysha. 

Since Wednesday July 25th, Alysha's bold, assertive and frugal family have moved into the surgical ICU waiting room - literally. The small bar-fridge is filled with their food and they brought in an air mattress to sleep on.  Momma Bear has no intention of leaving her baby.

Alysha update July 29/12 at 9:00 am

Clean Blood - Fresh Start: 

Report from Lisa this morning: "Good morning. Alysha had a good night. Her hemoglobin and blood pressure stayed in a good range. No dialysis today, just rest."

Alysha update July 28/12 11:00 pm

Dialysis

      Another upswing in Alysha's condition. They were able to initiate the dialysis treatments today. She was on dialysis for 8 hours and the treatment yielded 3 Litres of fluid and waste. The Dr.'s have told Lisa it is very possible that Alysha's kidney function will return. By late afternoon Alysha was moving her body parts again. Her fingers, toes and lips. It sounds like she tried to kick Rich. The Doctor told Lisa he was able to get Alysha to fully open her eyes after annoying her with auditory and physical stimuli. She is still being mechanically ventilated with 45% oxygen.

      John went in to see Alysha. He said she looked "one thousand times better," than when he last saw her on Wednesday. She has a beautiful pink in her cheeks and the incredible facial swelling is now much reduced, especially after the dialysis. There is a plan for 8 more hours of dialysis tomorrow as well.

      Visitors today included John, Abby, Jason, Michelle, Jeanne, Aashish, and Debbie and her mom and Ron's Dad. They managed to coax Lisa, Rich and Justin away from the hospital to Jason and Chrissy's house with the promise of a shower and a home-cooked meal that Abby and her friends prepared. 

Alysha update July 28/12 7:45 am

Riding the recovery roller-coaster. 

      Alysha didn't have a great night last night. Now her kidneys are not working at all. Also, she is now in a real coma (one that is not forced by medicines purposefully by the Doctors). Dialysis is now a necessity and it will be the medical team's first priority to get that initiated this morning. On a positive note, they were able to wean Alysha off the medication that was increasing her blood pressure to normal levels. If she had remained reliant on those medications, dialysis would have been a slow process over the course of the day.  Instead, Lisa tells me that they will be able to more quickly clean Alysha's blood. Lisa told me that she is looking forward to Dialysis. "They need to get, all that crud (the medications and byproducts from the past 3 days) out of her blood". There is hope that after her blood has been cleaned, her recovery will continue forward like yesterday when Alysha broke through and showed us her will to live and her fight her way back.  Lisa is hanging in there but misses the inspiring responsive actions of Alysha's from yesterday.

      Jason was there again for the day yesterday, and Justin, Lisa, Rich and Ron have remained down in the city with Alysha since Wednesday. I think other visitors yesterday included Ron's mom and dad and friend Eric. Last night Justin dislocated his shoulder trying to sleep on the chairs - couch in the waiting/family room. Lisa and Rich were able to get it back in themselves but considered a trip to the ER for some conveniently located medical help.

Mother and Daughter

Alysha update July 27/12 late evening

Movement!

      There is some cause for celebration today as Alysha started to move her body - toes, legs, arms and fluttering her eyes in response to auditory and tactile stimuli. Her body has been warmed back up to normal body temperature. She is still on the ventilator. Her eyes remain closed. They have stopped giving her drugs that force her into the medicated coma. She was stable enough to have a CT scan today. Lisa said the CT scan showed a bit of swelling, "at the top of her brain." Lying flat for the CT scan caused her lungs to fill up with  fluid that had to be frequently suctioned out. Yesterday Alysha's kidneys were working at 25 percent, today they are working at less. Alysha is producing only 5 mls of urine an hour. They want her to be producing 50 ml per hour.  Lisa said, "Her kidneys are failing" and the Doctors are wanting to start Dialysis but in order to initiate dialysis they need to do a procedure that requires Alysha's body to lay flat and she still seems to de-stabilize in that position. 

      The story of Alysha's first movements goes something like this. Lisa went in to see her, told her the usual, that she was loved, and then told Alysha that she (Lisa)  was going to massage her feet since Alysha's circulation in her feet isn't great. Just after Lisa grabbed her feet Alysha curled her toes in. Jason was there to witness it and confirmed that Lisa wasn't just seeing things. 

      The family is celebrating this small achievement with a renewed optimism.

      It has been a big day for Alysha, and LIsa tells me that Alysha is exhausted. The plan is to let her rest through the night. Staff aren't planning on moving her or stimulating her in any way so that she can rest up.

Alysha update  July 27/12 7:00 am.

      I received a text from Lisa this morning 

"Alysha had a good night last night. They cleaned her up a bit but she didn't like it. I told them she just wanted to sleep and didn't want to be bugged."

      I don't have much more information at this time. She is still on mechanical ventilation. I am assuming she is still comatose and unresponsive. I will update you all tonight.

Alysha update July 26/12 at 7:00 pm.
Kidneys are failing

      Alysha is still on life support and in a forced coma.  Here is the good news. They have decreased her supplemental oxygen to 50%. They are starting to warm her up (out of the medical hypothermia). 

      Lisa was told something about Alysha's liver and kidneys but she isn't certain of the information.  I think her liver is fine but her kidneys are only working at 25%. She had an EEG today that ruled out seizure activity as she had some rhythmic eye movement. EEG's can also determine if someone is brain dead and the Doctors didn't report any results such as that to Lisa so I am assuming that is a good thing. They wanted to send Alysha for an MRI and CT scan today but in order to have these tests she has to lay flat on her back. When they move Alysha into this position her heart rate, blood pressure and oxygen saturation become unstable so we will wait for another day for these tests. An x-ray showed her lungs appear slightly better than yesterday - less fluid.

Alysha update July 26/12 at 8:00am
Alysha makes it through the night.

      Alysha Made it through the night. The doctors said she had a good night. Good is relative of course. Still on life support and comatose. 

      Lisa's text at 4 am  was this..... 

"I just went in to see her and she has had a good night ."

      The doctors re-affirmed that same "good night", message with Ron a few minutes ago.

Now we hope and pray for a steady and full recovery.

Alysha July 25/12   Post-Surgical Disaster.

Our sweet girl Alysha, 21 years old, had cosmetic surgery (tummy tuck) yesterday July 24th at St. Michael's hospital to remove extra skin left over on her abdomen after she lost 150 pounds.  Two years ago, Alysha had brain surgery to remove a tumour growing on her pituitary gland. The brain tumour had caused Alysha to gain a lot of extra weight. After the tumour was removed, Alysha rapidly lost 150 lbs and she was left with too much loose and baggy skin around her abdomen.   

Alysha Just Prior to Surgery

Alysha was awake and talking last night after her surgery. Between midnight and 3:00 this morning her previously normal recovery went badly. She is unconscious, unresponsive and on a ventilator and receiving multiple units / pints of blood. Her heart has stopped 3 times, the longest was for 20 minutes. She doesn't seem to be responding to any treatments. And the doctors are flummoxed.

Update: The surgeon who performed the tummy tuck yesterday cancelled all his surgeries today to be with Alysha. The surgeon from yesterday said the surgery was completely straightforward and uncomplicated No one seems to understand what has happened.

Update: The doctors updated Lisa and Ron and they are suspecting a fat embolism but they aren't sure. Alysha is in a medicated forced coma. There are teams of doctors in her room scratching their heads. 

Update: They told Lisa and Ron that they were considering transferring Alysha to Toronto General Hospital but they are worried that they won't be able to keep Alysha alive through the trip. 

Update: A Dr came in and had Lisa and Ron sign for consent for the use of blood and blood products. They explained why they were considering the transport to the General.  They can't get Alysha's Oxygen  saturation above 80% except for brief periods. Normal Oxygen saturation is over 90%.  They are considering a life-support option where they bypass Alysha's lungs and a machine oxygenates her blood. They are worried that Alysha's lungs aren't in good shape. They can do the lung bypass care at St. Michael's but they specialize in that kind of care at Toronto General and there are a few more care options at the General.  The medical team is trialling lifting Alysha to see how her body responds to the movement that would be encountered during the transfer.

Update: Lisa and Ron have been burdened with the responsibility of making a tough choice.

1. Stay at St. Michaels where they have maxed out their ability to oxygenate Alysha's blood or

2. Transport to Toronto General where they specialize in the care that Alysha needs, but risk a 50% chance that she will die during the trip.

Update: Alysha's condition improved marginally, so the Dr's have recommended she stay at St. Michaels. Her parents no longer needs to make the decision to transport or not.

Over the course of the day Lisa and Ron have been very generous with the couple of visitation minutes they are allotted each hour to spend time with their daughter. They have sacrificed those precious minutes with their daughter to allow for each family member to spend some time with Alysha.

Alysha is incredibly swollen in her face and neck and chest. Her skin is stretched and has a waxy appearance. She is freezing cold to the touch. She is on a ventilator and except for her chest rising and falling with the breaths from the ventilator she is completely motionless and unresponsive. She is, however,  alive and her condition seems marginally better regarding her blood oxygenation. Keeping her alive and stabilising her are the goals for now.  

Update:  10:00 pm July 25/12. Jason, Chrissy, Michelle, Paul, Denise, Alex, Kahlan, Aashish, John, Abigail and I spent the day at the hospital. Other visitors included Rich's family and Lisa's friend Debbie and daughter Robin. Most of us are leaving for the night and  Lisa, Rich, Ron, Jeanne, Justin, Aashish and Michelle are staying. The doctors are slowly (minimally) reducing Alysha's respiratory support and she seems to be doing ok. Her freezing cold skin is because of a forced hypothermia to decrease stress on all her organs and to decrease her body's need for oxygen. That decreases the workload on her heart and lungs. They may slowly start to warm her up in 24 hours. The warm-up process will take 24 hours and then they will start to ease her slowly out of her medical comma. 

Prayers are welcome as are miracles

Marcia Rowat (Aunty Marcy)

Marcia, Lisa and Alysha