Thomas update

So yesterday was the first day post surgery and it was actually pretty hectic. It started with a chest x-ray, which they will do almost every day to check the placement of the endotracheal tube (breathing tube). Then the PICC people came by to see if his veins looked any better so they could give the PICC another shot. She liked what she saw, so she put us on the schedule for the day. Next nephrology (kidney doctors) came by since his blood pressure had been high. They agreed that the blood pressure is not anything to cause action at this time, so we will take that as a win. Next through our revolving door was a Physical and Occupational therapist. Since he will be basically lying still for 2+ weeks they come and move his limbs and neck and make sure his muscles aren't atrophying. I know the breathing is most important and we had to take action to address his breathing issues, but it breaks my heart that all the hard work he has done with his head control and overall muscle tone, will be wiped out by these two weeks. I know he is up for the task of working to get it back, but it just seems unfair that it may be like starting from the beginning. He is diagnosed with hypotonia, which means his muscle tone is low and he has significant overall weakness to overcome, so anything that works against gaining muscle for him is a steeper hill to climb than for others. However, both the PT and OT were encouraged by his range of motion (thanks to our awesome therapists we already have and his chiropractor!) and will continue to visit throughout our stay to help him.

The OT working with Thomas

ENT (ear, nose, and throat) were our next visitors and we will see them a lot, they are the main department that are in charge of Thomas. We learned that they slotted us for March 4 to go back in the OR and take the tube out to scope him and see how he is healing. That seems so far away and, even then, it is likely that he will still come back with the tube in. I know in the big picture this hospital stay is not that long, but right now it seems so overwhelmingly long that I can't picture the end.
After ENT left, the nutritionist came by and said that we are going to up his feed to 40oz a day so he can retain and possibly gain weight...40 oz a day is a ton of milk and I don't make that much milk right now, so while pumping, not sleeping, and stressed, I have to figure out a way to increase my milk supply (moooooo). After attaching myself to the pump, the PICC people called and said they would be up. They like parents to leave the room because it is a sterile procedure. I went to grab some dinner and came back up and they were already done, they said it was pretty easy. This is great news because a PICC (peripherally inserted central catheter) is much more stable than an IV and will hopefully last our entire stay so he doesn't have to be poked any more.

Thomas's second PICC certificate. Maybe I could make a bumper sticker - "My kid is a PICC kid from CCHMC"

After his PICC procedure, he was pretty agitated and had a fever, they gave him some tylenol which helped drop the fever, but he was still agitated and waking up. As much as I loved seeing his big beautiful blue eyes again, it was bad news because he was aware of the tube and trying to reach for it, but since his arms were tied down it was upsetting him that he couldn't get it and he was thrashing his head from side to side. That much movement is not good for him because we don't want him to dislodge the tube since it is stinting the cricoid (cartilage in his throat) open. So the doctors ordered more meds to sedate him further. They do the meds through his IV's and they take effect instantaneously, which is wonderful because it calms him and takes away his pain, but also awful because you can watch his eyes roll up into his head as they deliver their intended result. This dose of meds lasted about an hour and a half, then he woke up agitated again, but this time he was breathing funny. He was retracting (pulling form his neck and chest to get the air in) and we could hear some congestion, but when they tried to suction him they weren't getting anything. His retractions continued to get worse, so they gave him an albutirol treatment, which is meant to dilate his airway and help him get more air, but it didn't help. The concern at this point is that the leak around his breathing tube (which is an intentional thing) was too big and not all the air they were trying to push into him through the ventilator was making it in, so maybe his lungs were closing up. They ordered another x-ray to check his lungs and the tube placement to see if anything had changed, during this time an ENT resident came up and scoped him to see what might be going on.

The ENT scope, I have talked about before, is always interesting to watch, but particularly this time since Thomas's mouth was wide open. They thread the camera tube through the endotracheal tube (which is in his nostril) and you see the flashlight on the end of it go up his nose and disappear, then you see it reappear as the light shines in the back of his throat and then it slowly disappears again, as if you were throwing a light down a well, the ring of light just gets smaller and smaller until you can't see it. The ENT doctor said there was quite a bit of mucus at the end of the tube, so they went deeper with their suctioning and were able to clean it out, he then scoped again and said everything looked good from their end and the breathing tube was still in good placement. The x-ray also came back fine, a little atelectasis (lung collapse) but that can be normal for post surgery. To help with this, they inflated a small balloon cuff around the breathing tube to close the leak up slightly and make more of the air from the ventilator go where it was supposed to go instead of escape through a leak. The final step was to add a second drug to his IV drip to see if that just calmed him and normalized his breathing. He was on just morphine, but now they also added versed and that seemed to do the trick. As his tolerance to these drugs increase we will have to increase dosages or add other drugs to keep him comfortable. I hate the idea of all of these drugs and what their long term effect could have on him, but seeing him so uncomfortable and upset and not being able to hold him or even do anything was excruciating.
For what was supposed to be a waiting period, it has been pretty eventful and I am hoping that it is just finding our footing in the first few days to keep him comfortable and see what will work for him, then it will be a true just waiting period.