Dear Son ICU Update II

Dear Son struggled a bit in the ICU last night. As you may recall, Dear Son had surgery on Monday to replace his Vagus Nerve Stimulator with a new model, since the battery ran low. For the surgery, they gave him heavy sedation and Dear Son was unable to process his own secretions (saliva). As a result, he developed a mucous plug in the brochial tubes and his right lung collapsed. Dear Son was admitted to the ICU, placed on an non-rebreather, with 15 liters of oxygen. He was given Vancomycin and Zosyn to help fight the infection.

Last night, Dear Son struggled on his right side. He was breathing so hard that the nurse and I turned him on his left side, which is the site of the surgical incision. He was breathing easier however as a result of lying on that side, his left lung filled up with fluid. To reduce the fluid, they started him on lasix and are also giving him magnesium sulfate and potassium phosphate. They increased the Vancomycin since it wasn't at a therapeutic level. Blood gases, which monitor how hard Dear Son is working are still o.k. and are taken every two hours. He continues to get respiratory therapy every three hours that includes both percussor and albuterol. The albuterol helps the brochial spasm but makes Dear Son work harder since he does not get all of the oxygen he gets when he is on the inre-breather. The anesthesia can deplete the seizure medications so they are taking blood levels of those daily.

I spoke with Dear Son's Ped Neuro Doc to get a better understanding of the situation. He states that Dear Son has a substantial infection and will be there quite a while, at least two weeks. He is concerned that he's not stabalizing and that he may still need to be vented. He does not expect him to regain consciousness for a while.

The Attending Doc spoke with me tonight as well. She respectfully disagrees with Ped Neuro Doc and feels that if Dear Son is intubated, that he can never be extubated. She explained that she does this every day and since he may not be able to be extubated, she is doing everything she can to avoid it. She would prefer it if he wasn't working so hard to breathe but she is watching the blood gases. She also stated that last night, when Dear Son was working so hard, his heart rate was 175-180 and that today it was much better so we have reason to be pleased that while things aren't getting better, they could be getting a lot worse.

In addition, I explained to her that I had been worried that if Dear Son was working so hard and then was intubated that he might not make it. They stated that they are watching the blood gases so they will know asap if he is struggling. One frustration for me, throughout this hospitalization is that sometimes the numbers/data look better than what I see in terms of Dear Son. I know when he's working hard and it takes an awful lot of work for Dear Son to get through his day when he is well. For example, he goes to school, comes home and goes to bed after school then sleeps until the following morning. That takes all of his energy. So you can imagine that when he's not 100%, it would really take even more of his energy.

Finally, I had some conversations with Ped Neuro Doc regarding the surgery itself and the process for sedation. He agreed that they need to have a more formal conversation with Neurosurgery surrounding sedation for children like Dear Son as well as the discharge process for the outpatient surgeries. Perhaps with children like him, they may need to stay an additional 24-72 hours to be monitored.

Overall, I am quite cautious at this point. I am relieved that I have someone like Ped Neuro Doc who knows Dear Son so well (he's treated him for 17 years) involved in the decision making. I also know that if anyone can save Dear Son, it's Big Academic Center's ICU. As for Neurosurgery, the Neurosurgeon implanted Dear Son's device in 2004 under worse conditions and Dear Son recovered. While perhaps a different outcome may have occurred with the use of a breathing tube and general anesthesia or perhaps simply by additional monitoring for 24-72 hours, I do feel that he did try to make the best decision for Dear Son on that day. I recall discussion that morning of whether or not to use a breathing tube. (The majority of the time, they do not use that for vagal nerve stimulator replacement surgeries.) Dear Son is a complex case and it's important to remember that when he made this decision, he made it in his best interest. I don't think anyone expected that this would have happened and I think it's much easier to look back and think that a different decision could have been made when in reality, it would be pretty hard to forsee this type of situation. That's just my take as a mother. I guess what I am trying to say is that while it's certainly unfortunate that Dear Son is in this predicament, I do believe the Neurosurgeon was acting on Dear Son's best interests.

Thank you for all of your comments, thoughts and prayers. I appreciated your continued support. I will try and keep you posted as much as possible. I am home tonight since Dad is staying overnight however I will be there the next few days.