The Worst Week
It was one year ago today that we took Cassandra to the hospital for the surgery that would ultimately lead to her death. We had been following the surgeon's orders not to give Cassandra any nutrition since shortly after midnight, and she wouldn't get any more until after her surgery. Due to unforseen circumstances, Cassie's surgery was delayed and the long long time and the lack of nutrition and drop in blood sugar caused the brain injury that killed her.
I have looked back to this day many times over the last year and part of what makes me sad is that, if we had it to do all over again, I think we would have. We trusted the surgeon and the feeding orders. We trusted the surgical team to watch Cassandra carefully. There was no reason not to. Why they let her blood sugar get so low, why they let Cassandra go so long without eating, why they scheduled surgery on an 19 month-old tube-fed child so late in the afternoon, we'll probably never know. I just know, with the information I knew back then, there wasn't much if anything I would have done differently.
So begins the first anniversary of the worst week of my life. I try very very hard not to think about that week, the doctors, the hospital, how Cassie looked, how I felt. It's just too painful and not at all theraputic. I'm sure I'll think about it a lot this week, though.
I'll just have to think about the good times with Cassie Boo more.
posted by Todd Akers @ 12:29 PM
4 comments
4 Comments:
How I've been thinking of you all as this week has been approaching. With your loss still hurting so, I want to offer to be a "salve ointment" ..or something...that can offer warmth, love, and comfort. Though you, Daria, and Leslie are the ones doing the hard and good work, do know I walk closely in spirit with you all this week.
Ever with love in the full and sparkling spirit of Cassie !
Warm hugs to all...Kitty
It is about 4:20pm and I am thinking back to what I was doing last year at this time. I think I was still waiting for the surgeon to come update us on the surgery. At this point we were still crossing our fingers hoping that this would be the last surgery Cassie would ever need. (Unfortunately it was.)
Even when the surgeon did come and update us on the surgery she thought everything went so well. She told us that like many "low tone" children Cassie might need to have this procedure again but that she had done everything she could to minimize that. She thought everything was just fine. Little did we know Cassie's brain was slowly starving to death.
The morning of Cassie's surgery she was acting so funny. She would hug me then turn and dive into Todd's arms, then turn and dive into my father's arms. It's like she had so much love she just wanted to spread it around. While we were waiting for the previous procedure to be completed and the surgeon to be ready for Cassandra, Todd laid down on the floor of the waiting room and took what ended up to be his last nap with Cassie. I still remember looking down and them and feeling so jealous because they looked so blissful. Perfectly peaceful.
It is now 7:20pm. This time last year I was already beginning to panic. Cassie has been out of surgery for over 2 1/2 hours and still wasn't waking up. On top of that she was breathing weird. In order to keep her oxygen levels up I was having to hold her head in "neutral" position. I was terrified because some Kabuki Kids have had their windpipe collapse after surgery so I had requested that the anesethialogist be paged. Shortly the battle would begin about this being a reaction to the drugs used during surgery. I kept telling them that wasn't the problem. Cassie bounced back from being put under. She would hear my voice and wake right up. Cassie had had 3 other surgeries before including the same procedure done at the same hospital one year earlier. I asked the nurse to see what narcotic had been used for that surgery. He check the records that he has and confirmed that it was the same one... "but in a much lower dose". WELL DUH she was a much smaller baby one year earlier. As the doctor and nurses we discussing giving her a drug that reverses the narcotics (and would leave her in horrible pain from the surgery) I looked over and saw that she was still on a lactated ringer IV (this has no sugar in it). I begged the nurse to take her blood sugar. She asked if Cassie was a diabetic (she wasn't as far as we knew) and did the test. The machine read "LO". They repeated the test and got the same results. They immediately send blood off to the lab to test it and started her on dextrose (now we know that the amount of dextrose they gave was too conservative and the way they treated the hypoglycemia was not correct). Once Cassie got the first dextrose she began to stir. I felt like she was beginning to come out of it and things were going to be fine.... How wrong I was. The nightmare was just beginning.
It is about 8:20 on the April the 5th. Last year at this time we didn't know that Cassie would be gone in less that 24 hours. Her last day in the hospital was awful. The alarms kept going off because her blood pressure was dropping. All day the doctors and nurses were doing a dance trying to keep her pressure and heartbeat up. They pumped her so full of fluids by now she was absolutely huge. Her autopsy listed her at 60 pounds, 60 god damned pounds. She was 22 pounds when she went in for surgery. The doctors were concerned that the drugs that they were using to keep her in a coma to allow her brain to start to recover and the seizures to stop were effecting her so they started to slowly ween her off them. It didn't help. Finally around 8pm they decided to start treating her for an infection. It didn't help. I didn't realize how close the end was. I took an antiaxiety pill that had been prescribed to me so I could make it though the night with all the alarms going off. A little while later the doctor told my my husband should come back to the hospital. Todd called our doula, Kathy and she came too. Kathy is the most amazing woman ever. She helped with the birth of both of our girls and was never more than a phone call away. Between the birth of Lesley and Cassie, Kathy's family got in a car accident and 2 of her daughters died and another is a paraplegic. She knows what we were going through. Around midnight Cassie blew a pupil (it stopped responding to light... in my limited medical background I assumed she had a stroke but no one told us anything). I guess around 2am in the morning Dr. Keller told me that there was nothing more that they could do. We had the option to ask them to do life saving techniques which would require that we not be around Cassie or deny them and let her pass with us beside her. We chose the later option. Kathy, Todd and I told Cassie we loved her and that she had been an amazing fighter but that it was ok to leave (I still feel bad about this... like I told her to go). Her pulse rate slowed and slowed but only when I took off my motherhood necklace that Cassie loved to chomp on and rubbed it on her lips did she finally let go and leave this Earth.
After Cassie died I helped clean her up. She had electrodes superglued to her head for the EEG (might be wrong name of the test). I still remember I pulled part off part of her scalp when trying to remove them. It was horrible. The hospital allowed us to cut some of her beautiful, feather soft hair and we did handprints. We were given a bag with alot of information about grief and families. Then we packed up and left. It was so surreal (might have been the drugs). We were home by about 4:30am.
Well one year later I thought we were doing so well but I'm not so sure. Lesley is losing it again. She is asking for Cassie and acting out (not listening to adults and hitting friends). I can barely remember Cassie. It is hard to believe but it is true. I remember stories but not her. I am so sad. And so scared. We want another child but this could all happen again. And I don't think I can handle it. Some days it takes all of my energy and love to deal with Lesley. I am just lost, adrift, and very alone (it is very hard to vocalize these feelings to other family members or friends...)
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