Trying to Find the Light and the Hope

Many of you will be very happy to know that I am writing this from home getting ready to sleep in my own bed for the 2nd night in a row. I do have to say it is nice to sleep in my own bed!!

Bill and I have been on the worst end of our Mason roller coaster since the NICU and have been struggling to find light in the dark and hope in the despair. Thankfully, today Mason's breathing and sedation were stable and we felt it was once again ok to leave the PICU so that we could get another night of good sleep. I once again apologize for not keeping you all up on the details of the last 36 hours, but I'm sure you won't mind since I really needed to take care of me. So, here's where we've been since the post from yesterday at 10:23 am...

Mason continues to need the increased support from the ventilator (PEEP of 12, rate of 28-30, inspiratory pressure of 26 for those who are interested) and has saturated anywhere from 78% to 95% depending on any number of factors. Yesterday, he required 100% oxygen to hold his saturations, but today they were able to wean him down as low as 80% oxygen concentration while maintaining saturations in the 80's. I heard that during the night last night, his saturations dipped lower into the 70's and they were able to figure out that it was a leak in the balloon seal around his trach. They were able to place a clamp on the tube that helps to keep the seal inflated and solve the problem. Tonight, the ENT doctor came in to see if he could problem solve why this leak continues to be a problem and decided he was going to try another type of trach. They will need to order it, so until it arrives, clamped tubing is doing the trick.

Mason's heart rate has fluctuated between 132 beats/minute to 206 beats/minute (mostly in the 150's), again depending on any number of factors including that he is not totally relaxed under his paralysis and fever. At one point there was a medication error in which he was given 10 mL of a medication instead of his 1 mL dose (thankfully, it was a fairly benign medication with short lived effects) and his heart rate went up over 200 beats a minute for a short time. With time, some soothing from his Staramama, and some peace and quiet in his room, he was able to slow his heart rate down quite a bit.

He also continued to have a fever, spiking at 103 degrees and coming down as low as just under 99 degrees (he normally runs just under 98). Mason has never really liked being hot! Today the temp stayed up, but did not get quite as high as 103 again. However, his white blood cell count went up again, too indicating that his body is fighting something. He's continued to get blood drawn daily to determine if there's a blood infection, but those cultures continue to come back negative. Today, to cover all bases, they sent off a bunch more cultures to test for everything under the sun just to be on the safe side. It's possible that his fever is in response to the withdrawal he's going through with this detox process, but they want to be ultra careful not to miss something that could be factoring in. They've started him on yet another medication to fight infection, but this time instead of another antibiotic, it's an antifungal. If he is growing some kind of infection, I'm pretty sure it doesn't stand a chance with all they're throwing at it!

Bill and I have been pretty worried through all of this change with need for increased support from the ventilator, continued fever, high heart rate, etc. Apparently, we're not the only ones. The team of intensivists meet weekly to discuss patients and come up with game plans for those patients. Apparently, Mason has been taking up quite a bit of those conversations. As our favorite intensivist puts it "there's no book on how to treat Mason." They've been putting all of their heads together, calling friends and colleagues around the country, and making sure that they are all on the same page with how to move forward. They have been trying really hard to present a united support for the current plan which is really good for us. They have time alone to hash out all of their support for and reservations about the plans, come up with the best option, and support it fully. That way, when they change every week, there's continuity in the plan. Really helps us!

**Warning, you may need a tissue if you read on.

Yesterday, after the physicians' meeting, the social worker came to our room and told us that the attending this week wanted to talk to us and give us an update of their conversation as well as a check in to let us know how things are going. I know enough about the medical world to know that if the social worker puts together the meeting, there's going to be emotion involved. Given that this meeting happened the day after Mason had another of his "crashes" and was now on more support, I knew this wasn't going to be a light hearted meeting. I was right. As Bill put it, this was the warm up meeting for the potential to have to make decisions. The doctors are running out of options. If Mason wakes up from this detox and continues to be very agitated to the point that he is suffering or not safe with is saturations, they need to know from us how much we want to do -- how long we want to continue to let him be agitated or risk potentially fatal infection/complications by re-sedating/paralyzing him for a long time. We have not made any decisions and won't need to until the time comes, if it comes, but they wanted us to know that that time might come.

Right now, it is difficult to find light in the dark, to find hope in the despair, but we are trying. We have not had to face this type of situation since the NICU nearly 2 years ago and really only a couple of times then. We don't know what tomorrow or next week holds. We don't know what is going to happen between now and when they take Mason off of the paralytic (likely this weekend - remember, the detox is at least 5 days). We don't know what decisions we will be faced with. We are holding on to each other to get through this, to try to find the light and the hope. We are comforted in the times that Mason appears comfortable and his vital signs are ok. We are comforted as we hold on to each other for support. We are comforted in knowing that so many are thinking positive thoughts, praying, and loving us from near and far. Thank you for providing that comfort!