The PET scan was scheduled for today and it was a lot more stressful and complicated than I thought it was going to be. First of all he had to be sedated for this because it is an hour long and he had to lay completely still. I know he did his other hour long scan not sedated but this machine is alot noisier and it was more important they he hold completely still. Second they had to inject him with some sort of molecule (cant remember the name) and let that sit in his body for an hour. They also had to give him contrast as well which is something I am not a fan of. Also they couldnt use his dialysis catheter for this so they had to start an IV in his hand. He thought he was done with pokes so this was VERY upsetting for him. And the last thing I wasnt a fan of was since they dont do too many PET scans at PCMC they cant afford to buy one for the hospital, so once a week a trailer (yes I said a trailer) pulls up outside the hospital with the scanner in it. Ghetto I know, I thought the same thing. So to say I was completely stressed out, overwhelmed and worried for my son was an understatement. At the last second I was really second guessing this scan but I felt it needed to be done, if we didnt do this we would always be wondering if it would have given us an answer.
To sedate him they went with a drug they havent used before because it doesnt drop his heart rate like the other one would because he now as what they call a regular irregular heartbeat. This meaning his heart rate is very irregular because it will speed up and they slow down, but that irregular heartbeat is doing it in a regular pattern if that makes any sense. These last couple of admissions whenever he was on the monitor at night his heart rate would drop down into the low 30s and then jump up to the high 180s. They dont know if that was his actual heart rate or just the monitor not picking it up because his heart rate is so different, so the NP today played it safe and went with this new drug. He did really well with it but half way through he started to wake up a little and cry so they gave him versed as well. The half life on this new drug is alot longer so I have had a high little man on my hands today. They wont get the results back for a couple of days so its another waiting game until then. Right now he is sleeping off the medicine and is starting to spike another fever. Please pray we can get some answers so Skyler can start feeling better. Thank you.
Wiping away his big crocodile tears after getting his IV. I felt so bad for him because he was so excited to be done with the hard stuff now that he is in maintenance.
This is the stuff that they injected into him.
This is the trailer. Its not as bad as what I was envisioning in my head when they told me they just pulled up a trailer.
Putting oxygen on him
I dont like seeing him lay there like that. I just want to pick him up and cuddle him everytime and tell him everything is going to be ok, but I cant. I had to leave him in that room all by himself on that little table. Please let this be the last time I have to do this. You would think after doing this so much that it would get easier, it doesnt, it gets harder each time.
Getting the scanner ready
This is the tech controlling everything. You can see all the images on that screen. Its crazy seeing my son like that.
This is blurry but its because I had to look at him through the glass window because no one could be in there with him. To make sure he was ok they had to sit and watch that monitor that is attached to him through the window. And since we were outside they told me they had to notify the ER to let them know what we were doing because if something went wrong they couldnt call a code they would have to rush him into the ER. That didnt make me feel too great
This video is of Skyler when he was just waking up and wanting a cracker. He is so drugged up in this video that its hilarious! Its kinda long but the beginning and ending is so funny