What a day

(guest post by kate)

Unfortunately not in a good way.

Today was really, really hard. The morning was fine. In fact, Adam started the day like the previous 2 days with care from Kathleen (including a hair wash, which he desperately needed). The only thing that seemed different was that his voice wasn’t as strong. He got a nebulizer treatment, and had his pulmonary function tests afterwards. His tests weren’t quite as good as yesterday, but only by a minor degree and he hadn’t had chest PT yet, and still needed to bring stuff up. Physical therapy came by and got him to sit on the edge of the bed, which was great, but he didn’t try the chair as he had yesterday. It wasn’t until early afternoon that he started to have trouble. His secretions weren’t coming up as easily, and his oxygen saturations started to bump around. He was coming back up to the mid 90’s, but the nurse checked on him a bunch of times. It seems that after a half hour or 45 minutes, he had an acute change. Suddenly, his secretions got to be too much for him and no amount of chest PT or suctioning was helping. He started to work harder to breathe and the doctors came in and let him know that they wanted to help him. They asked if he wanted to be intubated and put on a ventilator to help him breathe and he said yes. What followed was a reportedly a really rapid burst of action and minutes later Adam had a breathing tube in place. He was then transferred down the hall from the step-down unit to the ICU.

Unfortunately, I was at work at the time - just 3 buildings away. Kathleen called to tell me what was happening and I immediately signed out my patients and headed over. I can’t tell you how hard it is to see Adam intubated. He’s on medication to keep him sedated, but at times this afternoon and evening he hasn’t been extremely sedated. He seems to be quite sensitive to the medication, and when it was increased his blood pressure would decrease. In response to this the ICU team would turn the sedation down.

During a time when he was less sedated, he began to try and communicate with us. Since the breathing tube goes through his vocal cords and into his airway, he can’t make physical sounds. Trying to mouth words is pretty difficult too with a big tube in your mouth. I was trying to remember the sign language alphabet as he was attempting to use this to communicate with us, but his hands weren’t always able to form the letters. It was extremely frustrating for all of us. We were able to get a piece of paper with the alphabet written on it, and proceeded to have him nod when we got to the correct letter to spell out each word. This was obviously time consuming and also frustrating, but he was able to ask questions like “how long” and “why vent” to figure out what caused him to need to go on the ventilator and how long might he be on it. The doctors in the ICU think he was definitely having problems with mucous plugs in his airway that were likely too far down for a regular suction catheter to get out. Also, because of the Guillain-Barre, his diaphragm was likely weaker making it harder for him to mobilize and bring up his own secretions. There is also the possibility that the pneumonia has either returned or never fully went away. As for how long he will need the ventilator, we’re not really sure. He will have weaning trials every day to see if he’s ready to come off the ventilator, but the ICU won’t want to take him off until he’s ready in order to avoid having to put the breathing tube back in. He’s doing a lot of his own work on the ventilator, which is good, but we’ll have to take it day by day.

My most fervent wish right now is to have the ability to speed up time - to get him to the place where he’s off the ventilator and back in the step-down unit. Just yesterday, we were all wishing (Adam included) to be able to leave the step-down unit and have him go to either a regular floor or to rehab. Adam was definitely feeling like the old timer in the room after multiple changes in patients in the beds bedside and across him. What I wouldn’t give to be back on the step-down unit at this point! I wish I could trade places with Adam and take on the discomfort of being on a ventilator so that he wouldn’t have to experience this - he’s gone through so much already with this damn syndrome that I would happily take this on if I could. Also, I want to find the right balance of medications that will keep him comfortable and sedated without dropping his blood pressure too much. That has been really upsetting to have him spell out “sedation” - clearly wanting to be out of the picture more, only to have him come back to the surface after the medication is turned down because of the effect on his blood pressure. We’re hoping to find a better solution to this in the morning.

In the meantime, I loaded some ambient music onto his Shuffle to allow him to zone out if he wakes up and needs some escape. There’s more upbeat music on there as well, but he’s concerned about not being able to control the shuffle so we’re sticking to more soothing stuff at the moment. He was sleeping when we left. His bed vibrates (sometimes quite forcefully) to loosen the secretions (takes the place of pounding on his back for chest PT) and he was sedated enough to sleep through it. Kathleen and I hope that he will continue to rest and be comfortable throughout the night.

I hate having to leave him. Intellectually, I know this is what Kathleen and I both need to do in order to continue to have the energy to be with Adam as much as possible, but it’s really hard. My arms ache just wanting to be able to hug and hold him, or spoon on his bed with him. It’s something that will have to wait a little bit right now - there are too many tubes and wires in the way. For now I will do this in my head and in my dreams. Stroking his hair, holding his hand, rubbing his legs and doing his passive range of motion exercises will suffice for the moment, and will hopefully bring him as much comfort as it does me.