Exhaustion

Everything with the surgery went well. The culprit was not anything on the end of the catheter, it was simply that Max has outgrown it. The catheter has been in place for two years now, so it makes sense. *Cheers to Dr. Lim for putting in a catheter that lasted so long*

Dr. Alonso ended up removing the old catheter and placing a new one. It's on the side where is g-tube is so it's a little crowded, but it will work. My only concern is going to be dressing changes with a leaky g-tube, but we will figure it out just like we have figured everything else out.

Max had the worst episode of breath holding that he has ever had. Once we got back to his room from the PACU, I pick him up from the gurney and he immediately started screaming. I quickly laid him in his crib and he started holding his breath. His eyes were huge and I immediately felt horrible because I knew that I hurt him. He held his breath to the point that his oxygen saturation drop to the high teens. They are suppose to be in the mid to upper 90's. He was as white as your computer screen. Naturally everyone, including Tim and I started panicking. Max ended up passing out on us 3 times. I was yelling at him to wake up, one nurse was trying to get his leads hooked up and the other one was shoving an oxygen mask on him. Someone in the hall was yelling for the resident and on the phone calling someone else. After a few minutes of this I finally stepped back into reality and realized that he was no longer pissed because he was in pain, he was pissed because they kept shoving the mask in his face. He hates that mask. I mentioned it a couple of times and no one really listened so I finally raised my tone a little and stopped the nurse in midair from putting it back on him. I calmly told her to not put it back on him. I asked if we could see what he did with just the nasal cannula and everyone agreed. Max immediately started calming down and within a minute or so his sats were back in the 90s. I feel terrible now on how I reacted to the nurse, but I had to do something because they were calling in the respiratory team and I was afraid they would intubate him. I totally understand why she was doing it and I told her that afterwards, but there is a time when you have to step back to figure out why the child is screaming. I did that and thankfully it worked. It was by far the scariest thing that I have experienced so far in this journey and I never want to experience it again.

Max was doing very well when I left this evening. He was living the life watching Barney and having his daddy drop water into his mouth from a straw. He was perking up and looking a lot better. The plan is to let him relax and heal for tonight and we will connect him to his dialysis for a few hours tomorrow to make sure there are no leaks. If all goes well, we will be home tomorrow afternoon.

As far as how Tim and I are doing- we are exhausted. Tim worked from 7am Thursday morning until 8am this morning. He only got an hour of sleep before I woke him up telling him that we were heading to the hospital and probably into surgery. Needless to say he took a 2 hour nap once we got situated into our room.

My exhaustion has finally caught up to me. I have been tired every day for the past month, but have kept going because I had to. I had a little man to take care of, but tonight, well tonight Max is in the fantastic hands of his nurse and daddy which means that I will have an uninterrupted night of sleep for the first time in a very long time. With that said...

Goodnight ladies and gentlemen. I will update tomorrow to let you all know how Max is doing.

Thank you for the prayers. They are greatly appreciated.