It was an extremely busy day today. Aunt Beth, Uncle Steve and Aunt Jennifer met us at the house this morning to hang out with Trevor for a little while. He made everyone laugh with more cupcake hat. We still need to take pictures with Beth, Steve and Trevor before they leave!

Here’s Jen with little cupcake cutie:

Then we all went to the hospital to see Brendan while Bill stayed home with Trevor. I was very impressed with how well Brendan did today with all the company. They got to go in and see him one at a time, and while it was mostly hands-off, he was pretty relaxed and did not get agitated. He looked a lot better, aside from the fact that he got his feeding tube out of his nose again last night.

He had a new fancy blanket on his bed today, with a note that it was made by a local boy scout troop.

They only think that this elaborate new taping will keep the feeding tube in, they obviously don’t know Brendan very well!

Aunt Beth and Brendan, she was one of the lucky ones and actually got a smile from him!

Aunt Jen and Brendan, he mostly slept while she was visiting.

Uncle Steve talks to Brendan, he was pretty wide awake and found Steve to be interesting.

Steve definitely had Brendan’s attention

Unfortunately our visit was interrupted by a phone call to Bill from the other hospital. His dad was in very bad shape and they thought the family should come quickly. I dropped the other three off at the door and flew home as quickly as I could so Bill could go be with him. (Thanks Christine for coming by so quick so Bill could go!)
It was a scary afternoon, but Grandpa Jack pulled through and was stable again tonight. An adjustment to his new pacemaker and a heavy dose of Lasix brought him around. He was so close to leaving the hospital today to move to a skilled care facility for rehab, we are glad he had not been discharged yet!

It is 9PM and we are finally making some dinner, Trevor is in his pack n play having a very extensive conversation with his mobile. He seriously LOVES that thing.

Brendan is doing very well today, I appreciate all of the comments very much. His color was good and his breathing was better. The doctors even brought in a very seasoned toxicology expert to examine him and make sure they were not missing anything. He decided that they need to give him at least 24 more hours to get the methadone out of his system before they can start using it again (in correct dosages) for his weaning protocol.
He was mostly sleepy all day, still feeling sedative effects, but he is off the Narcan and they are weaning his Precedex as planned. He is getting his food again, slowly now because his bowels are moving again.
He is still on the OR schedule for the 12th, and has not been derailed from his surgery plan yet.

Bill and I had 2.5 hours of conferences with doctors, nurses and managers to discuss his situation and his plan for the future. We got to see a virtual 3D model of his heart constructed from his CT scan and I was very impressed with how cool that was. It was all color coded and could come apart in sections and spin in every direction to give us an amazing view of his heart anatomy. We also got to look at the video xray images of his heart cath and watch the dye go through his heart and lungs. Truly phenomenal to see, I could have watched it for hours. I was mesmerized.
We got to sit and select all of our favorite nurses and they will be trying to staff those people specifically for Brendan going forward. He will not have 14 different nurses a week anymore, they will try to give him ones that know him better and are good with him.

Here’s my sleepy boy, the pink thing is back on his forehead. This ugly thing measures oxygen saturation in his brain, it was important for them to watch that yesterday, and it never dropped.

He has the longest, thickest eyelashes!

Trevor spent the afternoon with Aunt Beth and Uncle Steve and loved every minute of being the center of attention. They brought him a hat, so he had to model it!

I am a cupcake head!!!!!!!

What is the doggie doing? Dogs eat cupcakes!

I don’t want to be a cupcake head!

I had to think for a long time today about how to write this blog post, and I hope I am never again faced with a situation that makes me feel like this again. There are a lot of gritty details that I leave out of some posts, but in the end I have included all of the high highs and lowest lows that have come our way so today will be no different.
The boys have a dedicated fan club that reads their story every day, but in the end this whole blog is really for the boys. It does no good to them to omit events so the day is detailed below. At the end of the day, we are all OK and that is what really matters.

Brendan had a fabulous morning, probably the best he has had in a long time. He had Ativan last night at 9:30PM and then made it through the rest of the night and well in to the morning without any more doses of Ativan or Morphine. The difference was that they started him on a low dose of Methadone via IV in preparation to wean him from the Morphine and keep him at a steady level of comfort. He got the Methadone two times a day starting yesterday at noon and then last night at midnight.

He sat up and played and talked and rested all morning with me until about 11:15am when I left the hospital to come home and get Trevor. I was going to stay home so Bill could go visit his dad in the other hospital. We had some lunch together and he was getting ready to head out when my phone rang. The attending physician was calling me personally. He asked me how far away I was and how quickly could I be at the hospital again, that he would wait for me in Brendan’s room. He said that Brendan had an event and that he was stabilized but I had better come anyway. As I drove the 20 miles back to the hospital, my mind raced with what could possibly be going on.

When I arrived, they disclosed that there had been an error and that Brendan had suffered an overdose during his noon dose of the Methadone. He had stopped breathing and required CPR (both chest compressions and bag breaths) for two minutes to resuscitate him. They figured out what had happened immediately and brought him back with a drug called Narcan which cancels the effects of opioid drugs like morphine, codeine, methadone, or heroin. Because the methadone is long lasting and the Narcan is only effective for about 30 minutes, he was put on a steady Narcan drip. The doctors could easily have intubated Brendan to be on the safe side to keep him breathing until he could fully get the drugs out of his system. But intubation could cause a major setback in getting to surgery, so they decided to see if he could fight through without the ventilator. He was on edge for a few hours, but so far has done well and nothing will change with surgery so far. Time will tell.

So what happened exactly? The Methadone comes in a solution with a concentration of 5mg per 0.5ml. That is 5 milligrams of active drugs dissolved in one half of a milliliter of a saline solution. The doctors orders were to give Brendan 0.5mg of the drug twice a day. One half of one milligram. This pretty much is a teardrop of the solution, it ends up being 0.05ml. The nurse confused this order and gave Brendan 0.5ml of the solution which means she gave him 5mg of the drugs – TEN TIMES the dose for his tiny little body. The very distraught nurse was sent home, investigation in to the error is already underway. Obviously there was a lack of failsafe to prevent this kind of mistake and it needs correcting immediately. Every person on the staff was apologizing, and promising to work on preventing the error. I also felt like there was full disclosure and admission of error, which I believe was very important.

He has a nurse at his bedside 100% of the time for the 12 hrs following the OD. I stayed at the hospital until about 8PM and then came home and switched with Bill, who is there now to spend the night with him. I will go back in the morning.

If this post makes you livid, worried, stressed, incredulous, or overwhelmed, I promise that I am feeling it 100 times worse. Please refrain from suggesting that we get new doctors, a new hospital, get a lawyer, get the TV media, etc etc. I can guarantee that we are doing everything in our power to take care of Brendan in every possible way.

If you feel like you want to do something to help us, then just leave a comment. Let future Brendan know how much he was loved and how grateful we all are that he made it through all of this. We will be dealing with the official repercussions of this in meetings tomorrow. Your little words of support go a long way to give us the strength to cope with these events.

The world is not ready to be without this bundle of sunshine