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

I have struggled to keep my eyes open for much of today.

Brendan had a busy day, starting with completely pulling out his feeding tube. Then he blew out the base of his ostomy bag and it all needed to be replaced. He has been getting analyzed for his opiate dependance and is starting methadone again with a weaning protocol.
His entourage is ever expanding, now he has added an ENT specialist to his team. They are going to be working with the GI team to figure out what kind of help Brendan will need to be able to start eating properly so that they can get rid of the feeding tube. Hopefully it will not require more surgery, but it is good that they are finally looking to the future and thinking about his long term recovery when it comes to nutrition and growth.

I like his little glow in the dark toes sticking out

I think he was checking to see if the coast was clear for making his blanket escape

Trevor met Aunt Beth and Uncle Steve today but was Mr.Crankypants about it. He was overtired I think, as soon as they left, he was out cold. He will get to see them again this weekend and they can get to know ultimate cute Trevor.

Grandpa Jack had surgery today to have a new pacemaker put in. He is in recovery and is doing well so far. We hope that he can get out of the hospital soon! The less family members in the hospital the better!!

Brendan slept a lot this morning, and when he is comfortable, he is very “hands off”!!

Today he went for another upper GI study in radiology. This time they were looking for something called a tracheoesophageal fistula. Because his stomach and ostomy bag filled with air so quickly when he in intubated, they worried that there might be this condition where the trachea and the esophagus had a connection that allowed air in to the stomach and fluids in to the lungs.
The test was negative – no signs of this problem were found, but at least they can rule it out. We had been told that the air in his bag was from him swallowing it while crying since the cannula is blowing air in at high pressure. This just confirms it is that simple and it isn’t something more serious.

We did get a tentative surgery date today – March 12th. Gramma is officially booked to fly back on March 5th so that she can help us out and spoil Trevor some more.

Trevor had another busy day. He had to go to the office today and help me with some paperwork. Poor kid had to cope with “Oooohh, the cheeeeEEEEKSSSS!!!!!” for a while but he handled it very well. He was a real charmer and when he had enough, he let me know it.

When we got home, he got his bubble bath. This is a picture of Trevor still covered in bubbles after his bath came to a sudden stop. I promised Trevor that we would not talk about why he had to be removed from the bath suddenly.

Trevor is going to help with “Rocky Training”. It starts with a Stallone impression and 100 knuckle pushups!!

I just trimmed his fingernails today and must have missed a sharp corner. Just as the other little scratch was healing, he gave himself a fresh new one.

Every day brings space time. I think he knows that kicking the pole makes the toys move.