A Very, Long Day

These days are so long and draining. The emotional stress is just exhausting, so this will be short and sweet!

Alex was taken to Pre-Op around 9:00. Anesthesia was started and I left him around 10. He did great emotionally today. He stayed pretty calm and went to sleep relatively easily. The ENT was first. It was determined a few months ago that Alex had quite a bit of wax buildup in his ears. I don't think anyone expected what they found today. They compared the wax they found to that of an old man. It was rock hard, adhered to his ear canal and ear drum and very difficult to remove. The ENT was certain that his hearing has been effected. The plan is to followup in clinic in a few months and do a hearing test.

Next Dr. Tsao came in to place his new port. He had wanted to try and place the physical port in the same place on the left side of his chest while putting his line in the most common spot his subclavian vein. When his first port was placed they could not get the line to thread into this vein, but Dr. Tsao decided to try again. Unfortunately once again this vein cannot be used. Because of this he has recommended we do an ultrasound at some point to try and find out why this vein is blocked. He used the same vein on the right side and was able to place the port with no additional problems. He finished right around noon.

At 12:15 Buggy was transferrred to the MRI suite to start the SSEP. This test messures brain waves while they send shocks through the limbs to see if the brain waves slow at any point. A slowing would indicate the spinal cord being compressed at a certain point. This test is supposed to take about an hour and a half. For some reason it took almost double that time. At 3:00 they finally started the MRI of the entire spine. It went as planned as I was called back to recovery at 5:15.

Then the fun started....As soon as I got back to PACU, the nurse asked if I had a needle to access his port. I asked why as Dr. Tsao told me he had left it accessed bc it is painful to access so soon after surgery. She informed me that MRI had insisted that the port be deaccessed to do the MRI bc the needle is metal. We have done numerous MRI's with his port accessed, but this tech would not allow it to happen even though several people fought to leave the port accessed. I quickly sent Missy up to the room to get a needle and other supplies so I could access him before he woke all the way up. By this time I was in tears because I didn't want him to be in pain as I stuck a needle into a brand new surgical site. Luckily, I was able to get him accessed before he was all the way awake. Since the port wasn't accessed the next question became how his TPN was running. When Alex is on TPN you cannot just stop it or he becomes dangerously hypoglycemic. TPN can only be run through a central line because it can damage peripheral veins (which are smaller). Sure enough his TPN had been running through a peripheral IV for several hours. About the time I was teying to come up with a solution a nurse from our unit came down and was upset by the situation. It was quickly decided we needed to throw the TPN out and run D10 through his newly accessed port until a new bag of TPN could be hung when he got upstairs. Alex breifly opened his eyes and then nodded back off to sleep. We hardle spent any time in recovery before they sent us back to our room. When we arrived, our nurse became upset because he was satting a little low and was not arousable. She made the decison to start him on oxygen. Since then he has had oxygen saturations of 100% and has been sleeping comfortably. He has woken up briefly a few times and then just gone back to sleep.

He ran a temp the whole time in the OR/MRI suite so we are watching that. It is pretty typical of him, but we want to be sure it doesn't go too high. We will run labs in the morning to be sure everything looks okay. Otherwise, I am praying he stays asleep until morning!

Thank you for all the prayers today.
Ali