When Izzy was rolled up from the operation room, her eyes were still taped shut and she was still wearing the OR's signature blue shower cap. When her seasoned PICU nurse removed the heavy blankets from her, she quickly registered that the Bean was burning up with fever. However, the young bubbly OR nurse quickly dismissed her and claimed that the Bean was hot from the thick blankets. I also noticed that Izzy was hot like a furnace, but I was more concerned about her uncharacteristic twitching and shaking. The OR nurses nonchalantly told us that the Bean was doing that earlier, and when asked about the anesthetics, they told the PICU nurse that Izzy received the same drugs that she had been getting at the PICU. It was pretty much the scope of the report they gave to the PICU nurse, who was visibly baffled by the OR nurses' behavior.
As the OR nurses were gleefully leaving, Izzy's twitching, shaking and thrashing around was getting out of control. She periodically stiffened up, squeezed my finger hard, kicked and shook and persistently tried to extubate herself. Izzy's nurse called the anesthesiologist and described Izzy's behavior, by which he was unfazed and instructed the nurse to find an intensivist. Unfortunately, the PICU intensivist who is brilliant and knows Izzy well was at a funeral and another doctor was filling in for him for a couple of hours.
I think at one point six of us were standing around Izzy's bed trying to calm her while wondering what was going on. I repeated (probably way too many times) that Izzy's behavior was markedly different from everything that we had ever seen from her, and no it wasn't anything like her regular seizures or fever reaction. Since the OR nurses had told us that Izzy didn't receive any new drugs, the consensus was that she was just fed up and mad and irritated at her tube. The substitute doctor noted that Izzy's motions were purposeful, and I had to agree since she very purposefully targeted the people in white coats, while giving them the stink eye and the furrowed brows treatment. The Bean tried to kick the white-coat-wearing doctor and she grabbed and squeezed her hand. She did the same with the nursing student, who also wore a white uniform.
At this point, my 30-pound feisty angel was given enough sedatives and painkillers to knock out a large solid-hoofed domesticated mammal, but her aggravation didn't subside. Just to make her more miserable, the phlebotomist showed up and started poking Izzy to obtain a blood sample, but apparently she had more attitude than skill and the nurses had to take over. After watching Izzy being utterly miserable for hours, I was ready to take everybody out ninja-style with the IV pole. Since the consensus opinion on Izzy's behavior was that she is just very annoyed with the breathing tube, I was ready to extubate her myself.
I didn't take anybody out with the IV pole, nor did I extubate Izzy, but I did throw a respectful but distinct temper tantrum to our good doctor, something he probably really appreciated right after his return from the funeral. As I said, our doctor is absolutely brilliant, not just as an expert but also as a human being, so when I emotionally erupted at him and told him that I just WANT THE TUBE OUT, he didn't just dismiss me. He put the nurses and the drugs on hold, looked at me seriously, and very calmly and nicely told me that if that's what I really wanted, he could extubate Izzy since she was at 50-50, but I had to be aware of the risks of re-intubation and the fact that she still had a lot of thick secretion and a freshly grown pseudomonas infection. Now, that was just unfair, to be all reasonable and logical and kind and taking my tantrum seriously. Seriously, how am I supposed to argue with that? Thus confronted with reason, I stopped acting like a crazed mother bear and I told him that he was the doctor, I fully trusted his judgement and I didn't want to override his decision (which is exactly what I was doing). "Just pleeeease knock her out" was my only emphatic request.
Now that I finally let him do his job, he ordered the nurses to increase the sedative and the painkiller and after he had watched Izzy's vitals for a while, he concluded that she was not in pain. He also obtained actual written information on the drugs that were administered to Izzy during the anesthesia and discovered that, contrary to the OR nurses claim, she indeed received some additional anesthetics. Hence he quickly concluded that Izzy's behavior was an allergic reaction to the sleepy gas, he ordered some Benadryl and the Bean consequently stopped her exorcist act.
The good news is that the VNS device got implanted and the Bean is knocked out, hanging out on la-la land. The bad news is that she is still intubated and three different organisms are growing in her trachea which require three different antibiotics. One of them is a pseudomonas infection, which required an ambulance ride to the intensive care unit and two weeks intravenous antibiotics and oxygen when she last got it. Along with the pseudomonas, they also found some staph and yeast infection in her mucus culture. There is a small microorganism party in the Bean's trachea, and I wonder who else is invited. Besides the pathogen party in her culture, the Bean's elevated white blood cell count also indicates that there is an infection in her body. And just to make things even more interesting, she was throwing up last night and the formula was just sitting in her tummy unabsorbed.
I have the feeling that we are going to celebrate Labor Day with the nurses. Last time we were hospitalized, we celebrated Halloween and Phil's birthday at the hospital cafeteria.
19 comments:
Glad the procedure went through. I hope the rest of her health issues clear up. Its just not fair that you have to battle sickness on top of the seizures. Miss and love you guys.
Hang in there Erika. Don't look at everything as a whole. Try to deal with one issue at a time. The VNS surgery was successful, thank God. Now we are praying for her infections to go away quickly, so that she will be healthy enough to go home.
Stay positive and courageous Erika.
Whoa Erika, there was a lot going on and still is! It really must be hard for you to not go nuts!
I am glad that the VNS surgery was a success. And that your doctor is such a good doctor! This is so important!
As for the infections I really keep on praying that they will go away quickly so that you will not have to stay in the hospital for too long!
Thinking of you! Hang in there, we are virtually by your side!
((hugs)), ((hugs)) and more ((hugs))
Hú, ez igy tényleg nagyon sok egyszerre. Olyan jó, hogy te ismered Izzyt a legjobban, sokkal jobban tudod, hogy éppen hogyan viselkedik mint bármelyik orvos. A mi mennyei Atyánk pedig még ennél is sokkal jobban ismer bennünket, téged is Erika, téged is Phil és a drága kis Izzyt is.
Kádár Szandra
Oh Erika ... I have been through similar experiences where I just want to seriously hurt someone. Know exactly where you're coming from. Feel for you all - why can't things progress a bit quicker and save us from all this anguish.
You and Izzy both have reason to be fighting mad. Stay strong, and I'm hoping the infections can be ratcheted down fast, tube removed, and home will appear on the horizon soon. Thank goodness you've got at least one doc you can trust to listen well, tantrums included.
Ditto Mr. Ayres...Double ditto.
More hugs, hang in there, all of you! You are all in my thoughts.
((())) Will keep you, your husband and Izzy in my thoughts and hope things improve soon.
triple ditto, kim and claire
love and light
My good Erika I wish I were near you during these tough hours.I keep on praying and I do hope things will improve soon.
Izzy is a strong girl and will emerge from this hell, smiling and kicking her legs. We're all pulling for you here, Oliver in particular, who "hates those tubes."
Love and hugs to all three of you.
Wishing you the best, again, and sending all our positive energies. Hoping that you leave the hospital very soon as we all know they are cesspools of infections...home is always the place where people get better quick.
We're all thinking of Izzy and you and Phil and hoping for times when white coats are just bad memories. Huge hugs, lots and lots.
I'm thinking of you and your family and saying some prayers. Thank you for the update, and I'm sorry all this is so hard in so many ways. Izzy is beautiful, and you are doing a good job.
praying. glad the doctor was helpful.
jenn
I hope you all have an uneventful few days of recovery and everything starts improving. I am very happy that you have such an awesome doctor to help you through all of this. It makes all the difference in the world.
Erika, you are just incredible. I don't know how you manage to go through all of this and yet be strong for Izzy.
Glad to know the operation took place successfully and don't worry I'm sure all her infections too will be gotten rid of soon.
Lots of (((hugs))) and prayers
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