Another "Kayla list" -
Give updates and hello and text Ron, Rachy Mama, Ash, Janelle, Velvet, Ad, Missy, Lil L
Found inside Kayla's New Testament/Psalms/Proverbs green bible that she keeps by her side probably written 3-31-11
Also in the bible next to it, her most current list of things to do:
Call/text Friday
Janelle - How are you?
Ash - Last day
Lil L - How are you?
Rach F. - meet up soon (Rachy Mama)This was written the day before Kayla's cardiac arrest on April 1, 2011
An older list date unknown
Text my girls
Ash
Janelle
Velvet
Jess M.
Rachy P.
Rachy F. (Rachy Mama)
Missy
Erika
Nicole F?
Adam
Vin
Short Synopsis: There was a lot of discussion about doing the surgery to close up Kayla's chest. At the same time, they had a new plan - to possibly switch her over to a another new device - the P-VAD (Paracorporeal Ventricular Assist Device). Paracorporal means "around the body." It is an external device, a heart pump, which circulates the blood that her native heart can no longer manage. Her brain and organs cannot be supported in any way with her original heart. Thoratec.Com is the company that manufactures both the Biventricular Assist Device (Bi-VAD) that she currently has implanted and the new P-VAD, which they were considering.
The Bi-VAD uses a centrifugal force for pumping so it's smooth and there is only the top number for the blood pressure. The right ventricle has a pressure and the left ventricle has a pressure. The new P-VAD would, once again, register a regular blood pressure with a systolic and diastolic number. The P-VAD has a pump that pulsates like a real heart.
Early in the afternoon, they decided to do the surgery even though she had a 101 fever. They felt strongly the fever was associated with the left lung injury and not fully systemic in her entire body. In the end, they switched her over to the P-VAD successfully and completely closed up her chest.
We were only allowed to see her briefly. She had been through a lot - 4 surgeries in 11 days. The nurse wanted her to rest and I was not allowed to touch her or stimulate her in any way. This seemed reasonable.
The Long Story: Up to this point, I have been passive. I have not interfered with anything the doctors are planning. But when the resident called on the phone previously and asked permission to do the chest closure, I got aggressive when he said, "It is an Add-On. It could be done on Tuesday morning."
"Wait a minute! First you were going to close her chest on Thursday morning. Then, it was postponed to Friday and then they told me nothing would happen for the weekend." Presumably the surgeons were off until Monday.
"They did the surgery on Tuesday. They said two days and then they would close up her chest and then she could move forward and get off the respirator. Now with this Tuesday thing, we are talking six days with an open chest. I was told the longer on the respirator, the harder it is for them in all ways. And the lung injury could have been a result of all that."
The sternum is split open and until it is wired closed with staples, there is no way one can breathe. She would be delayed in getting off the respirator.
The resident was silent and responded with,
"I'll let the team know your concern when they meet in the morning. It is reasonable. I understand."
I continued, "Now I think Columbia has been absolutely fantastic. You guys have done a terrific job. This is the first thing that I am concerned about."
He was true to his word. By the morning, when I arrived to see what was going on, there was much for them to tell me but there was a new factor, a 101 degree fever!
Perhaps they wouldn't do the surgery. The attending doctor went to the bedside and informed me that they were having many discussions regarding what to do next. They wanted to get her on to the next device, the P-VAD, which was a more long term device. She could even eventually go home with a lot of patient instruction on his device and where she would continue to wait for a donor heart. All of these devices are bridges to transplantation.
There were two routes, he said. Switch over to the new device and close up the chest or just close up the chest and schedule the surgery for later after they had taken her off the respirator and strengthen her some.
The attending said the surgeon could make the call, maybe even as they were in the operating room. Mid-morning when the operating team arrived to take her down, there were still more discussions going on, so they left. "We'll come back in 20 minutes and see what they decide."
Kayla was wheeled into surgery by 2:15. By 5:00 p.m., Dr. Latif, Kayla's transplant cardiologist, came to the waiting room to find me. We had a long discussion. Every time I see her, I recognize her yet, I do not know who she is.
It has become comical, as I didn't know, once again, who she was when we spoke on the phone many weeks ago. Then I didn't recognize her when I saw her right after they saved Kayla from the cardiac arrest. For the third time, I didn't recognize her when she was sat down in front of me. I am embarrassed and shocked that I have some sort of mental block when it comes to recognizing this person!
Dr. Farhana Latif is her name and she is very competent. She replaced our beloved Dr. Mario Deng, who left for UCLA and a higher position, heading up their Transplant Cardiology and Mechanical Devices Department.
I keep looking at Dr. Latif and think she is a nurse or somebody from anesthesiology or something. We have a big laugh every time when I finally realize who she is, with a big Ahhhhhh moment. This time I absolutely know that I will recognize her when I see her next!
If Kayla progresses well, she will go upstairs to the step-down unit on the 7th floor where they have a special unit that has VAD patients. The nurses are qualified to treat these patients. Eventually, she could go home and wait there for a donor heart. Dr. Latif said it takes a very long time to get a O+ heart, the most common and popular blood group for getting a heart.
The surgeon Takayama came to sit with us and said the surgery went very well. The device was in. They had clamped off the other tubes and switched it all out somehow. He reported that they were closing up her chest. Her fever did not interfere! It was now 5:30 p.m.
Erika, Emily, Missy and Adam came to see "the Kayla."
"You know the rules! Only two at a time," the nurse reminded us.
"I just see other families who come in with a group, so I thought I would try..."
We took turns and only stayed a few minutes. Kayla's face looked very tired. The nurse was very protective. No touching. No stimulation. She needed to rest. This seemed reasonable. It had only been a few hours since the tough surgery.
"This is my patient. I am responsible for her." I have watched this nurse for many nights now. Her speech is hard to understand, but I am respectful.
It was disappointing to see Kayla so still after much action the night before with my sister there...
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