Cassie's Journey

Cassie had a successful tracheostomy surgery yesterday evening. This morning she has been awake and very aware, even smirking at a few of the boys witty one-liners. She was even able to muster up her first words to the family saying “I love you too”. She is still too weak to have a speaking valve retrofitted, but she is beginning Occupational Therapy to increase her strength. They are getting her arms and head moving through a number of different exercises.

This morning she was also tilted upwards, where her hospital bed is able to move her entire body all the way up to a 60 degree angle to help stimulate the sensation of standing and move the fluid throughout her body. Both her left leg and right legs have pulses today, which the ICU team was unable to find earlier in the week. They are unsure what this means for her future functionality but will wait for her to be able to speak to the team to assess pain and movement. The goals of the team are to continue encouraging her to move her body and breathe on her own as she is looking to take significant steps in her recovery.

Additionally, Cassie has loved to receive videos and audio messages from her support group. If you have anything you would like to pass along to her, please send these directly to the family members so we can pass on your thoughts, motivation and prayers to her.

Cassie has just returned from a successful tracheostomy operation. Last evening she remained off the ventilator and continued to initiate her own breaths. Physical Therapy and Occupational Therapy observed her today and confirmed that she is ready to begin recovery activities tomorrow.

Vascular redressed her left leg and adjusted the wound vacs that are helping the fasciotomy wounds heal. The vascular team confirmed that she now has a pulse in all of her extremities. While this is promising, there is still concerns for the future functionality and the family has been informed that amputation is the most likely outcome.Vascular consulted dermatology to confirm if there is an infection of the skin in her left leg and right foot and are awaiting test results. Please continue to share your thoughts and prayers in the comment section below so the family can continue to share them as she becomes more aware.

The family would like to give a special thank you to Mennel Milling and Rowmark for the incredible support this week. It is incredible how after many years working together those people become more than colleagues, but family.

Cassie continues to remain stable. Overnight she had a CT scan that confirmed there was good brain activity and she continues to pass all neurological exams performed by the medical staff. She rested for most of the morning, but woke up and was able to communicate with the family this afternoon. She is still on standby for the tracheostomy surgery but is scheduled to have that performed today. In the coming days after the surgery is performed the medical staff will be able to give her a speaking valve where she can verbally communicate.

Cassie continues to remain on dialysis as it is helping to offload the fluid from her body. Her pacemaker wires were removed as she has not had to use them since she has been taken off ECMO. Please pass along your prayers to Cassie as she will be heading back into the OR tonight.

Cassie continued to remain stable. Today marks 19 days since her original valve replacement surgery. Overnight Cassie was able to get 8-9 hours of rest and reduce her blood presser medication. She continued to use the ventilator throughout the night to allow her body some rest. This morning she once again passed the Respiratory team’s “stress test” and the ventilator was turned off. She remains intubated but is continuing to breathe on her own. Three of the 6 chest tubes that remain in her will be removed today. This is because they are no longer taking out any liquid from her body. All 3 tubes on the left side of her chest will continue to stay in-tact until the fluid stops flowing from these as well.

Cassie is scheduled to take her 11th trip to the OR tomorrow where the ENT team is planning to perform a temporary tracheostomy. This surgery is required as she doesn’t have enough strength to protect her throat (e.g. coughing or clearing her throat). She continues to remain on dialysis to help cleanse her blood at a faster than normal rate. However, her kidney function has dramatically slowed down. Sonography confirmed that her kidneys are still functioning, but the ICU team has concern for her future state kidney functionality.

At this point the demarcation in her left leg has stopped, and there is no demarcation above her left knee. Cassie is also scheduled to take her 12th trip to the OR on Monday (5/5) to clean out the wounds in her left leg, ensure there is no infection, and redress the wound vacs.

ICU team’s goals for the day are to continue her fluid offload (targeting 1 liter of fluid offload per day), let her breathe without the support of the ventilator, increase the angle that she can sit up (45 degrees is as far as she’s gone), and monitor her usage of blood pressers. The family appreciates the continual thoughts and prayers as Cassie continues her fight.

Cassie has continued to remain stable. The Respiratory team evaluated her this morning to perform an extubation. However, she did not pass the final evaluation by the team and has remained intubated throughout the day. The ICU team requested a consult by the ENT team to assess her for a temporary tracheostomy. She will continue to be evaluated each day this week to perform an extubation, but if she is unable to pass the assessment the ENT team will conduct a tracheostomy. This morning she was very awake and aware meeting with the family and sitting at a 45 degree angle. Since her blood pressure has continued to be more stable the ICU team is sitting her more upright, which allows her to breathe easier.

Throughout the day her blood pressure continued to decline, which resulted in the ICU team having to increase the blood presser medication. She must continue to maintain a high blood pressure to ensure there is blood flow throughout her entire body. While her blood pressure dipped, her blood became more acidic. This is caused by her being unable to expel CO2 in her breaths. Cassie also had to be supported in a light setting by the ventilator to reduce this acid. Overnight the ICU team will look to reduce her use of blood pressers and take her back off the ventilator.

Lastly, rheumatology confirmed that she does not have Vasculitis and at this time are still unsure why her initial heart was unable to restart following her original valve replacement surgery.

Cassie continued to remain stable overnight. She was unable to get much rest as the ICU team performed a scan of her gallbladder. This test confirmed that she doesn’t have any infection in her gallbladder and is continuing her recovery. Cassie has remained off the use of the ventilation machine since 9 AM on April 27th. The Respiratory team will perform one more “stress test” of her lungs without the use of any ventilation later this afternoon. If she passes the final stress test, she could be ready for extubation. She has continued to decrease her usage of blood pressure medication which is allowing for the team to begin fluid takeout procedures.

The vascular team redressed some of the wounds from the fasciotomy performed on her left leg. They cleaned the wounds out, confirmed that there was no further infection, and reapplied wound vacs to help her open wounds avoid infection. The ICU team continues to remain concerned about the viability of her lower left leg at this time.

Cassie continued to remain stable overnight and was able to get some more rest. The ICU team is continuing to test her ability to breathe without the use of the ventilation machine. She has been able to go up to 4 hours of breathing on her own without any machinery support. She will need to continue to strengthen her independent breathing before she can be extubated. The ICU team has continued to decrease the blood pressure medication that she is using. As she weans off the use of blood pressure medication, the ICU team is looking to find a way to offload the extra fluid in her body. At this moment it is estimated she has an additional 50 lbs. of fluid weight in her body. She will need to remove this additional fluid before she can be extubated. Cassie continues to be awake and aware while communicating non-verbally with the family. She was able to listen to the St. Mark’s sermon given by Dan Metzger today. The family thanks all those that have continually prayed for her recovery and appreciates the outflow of support offered to them.

Cassie continued to remain stable and got around 6 hours of rest last night. She is continuing to get more rest as her pain management is currently under control. She still has a large amount of fluid in her body that needs to be removed before extubation can be considered. However the ICU team is unable to begin fluid removal medication until they are able to reduce her reliance on blood pressure medications. Her left leg continues to be a concern to the medical staff and they are continuing to consider the need of amputation or skin grafts.

A pathology report confirmed that Cassie’s previous heart suffered from medium vessel vasculitis, which they believe could be a contributing factor to her original heart failure and the cause of the left leg compartment syndrome. However, more pathology testing is required to confirm if this continues to affect the rest of her body. Vasculitis is an autoimmune disease that will be treated with the same medication that she must take post-transplant. Rheumatology will come and visit her today to determine if any further steps need to be taken to address the vasculitis.

The ICU team goals of the day are to reduce her blood pressure medication and temporarily turning off the ventilation to allow her to breathe on her own.

Cassie continued to remain stable overnight and was able to get 5 hours of rest. Cassie went into the OR at 1:30 PM today to address the wounds remaining from the fasciotomy on her left leg. Unfortunately her left leg has not continued the progression that gave the doctor’s optimism on 4/23. Her blood flow past the ankle of her left leg has greatly reduced. The vascular doctors were unable to close the remaining two wounds on her lower leg and had to reopen a wound on her thigh to confirm there is no infection. The vascular team confirmed that none of her wounds are infected and plan to perform a bedside dressing change on Monday. The spyware equipment used during today’s procedure continued to show functionality in her left leg muscles. However, the skin in her lower left leg was not showing functionality and may require a skin graft.

On top of this, Cassie has had preliminary tests identify that she most likely is suffering from Vasculitis. Vasculitis is a condition where blood vessels throughout the body become inflamed. At this time, Vasculitis does not pose a serious risk to her but must be addressed with medication over the coming days. A Rheumatologist will evaluate her on Monday to decide how to best address her Vasculitis.

While this has not been her most positive day in terms of recovery, the doctors have confirmed that her new heart continues to function well and is working independently of any machinery. Cassie will continue to fight through any adversity on her path to recovery. The family asks for continual thoughts and prayers as she looks to tackle the next challenge in this lengthy process.

Cassie continued to remain stable overnight as her heart and lungs are continuing to work without the use of any life saving machines. Last night she got her first non-sedative induced sleep (roughly 3 hours) since her first surgery on April 11th. Her left leg is continuing to recover using the support of wound vac’s. There are two remaining incisions on her left leg that remain opened. Cassie is scheduled to have her 10th visit to the OR tomorrow where the vascular team will wash out the remaining incisions and look to close up her wounds. As of now the only machine support that Cassie requires is Dialysis to help her kidneys work overtime to clean her blood and the ventilation to continue to supply her with oxygen while she remains intubated. The medical staff are still unable to confirm a timeline for when she will be able to be extubated. However, the ICU team is working to reduce the ventilation she is using throughout the day based upon her tolerance to the reduction.

The family would like to extend their deepest gratitudes to all those that have donated meals, gift cards, and shared their thoughts and prayers. Last night we were able to read all the comments to Cassie as her awareness continues to increase daily. She is able to move her head to communicate with the family, and she was deeply moved by all the wonderful words. Please continue to share your kind thoughts and prayers through the comment section and the family will continue to read these to her each and everyday. These words of encouragement will help strengthen her as she continues to fight each step of the way in her lengthy recovery ahead.