Wednesday, October 9, 2013


The feelings and emotions associated with this massive event have begun to settle in. It all seems so surreal, though. We've spent countless nights in the hospital before for different reasons, so I am having to remind myself from time to time that this is the real deal. This is the day that we have been working towards and waiting on for two years.

Our day started out kind of rough. Of course on the most important day of the trip, the day we report to the hospital to admit, the alarms on our phones don't go off. I looked at the clock, saw 8:10 a.m. and hit complete panic mode. I have never gotten ready, packed, and cleaned up in such a short period of time before. Of course, per usual hospital protocol, we were rushing for nothing. We got here and had to wait an hour before being seen by anesthesiology. After anesthesiology, we went to sign in and admit, but they didn't have a room ready for us yet, so we decided to get lunch. The food court here at the hospital is massive. There is everything under the sun to choose from, so we opted for Chinese. It is our hospital usual after all. Once we were done with lunch, our room was ready for the night, so we headed up to get settled in. At this point, we are all pooped, so we took a little nap. Well, actually they took a nap and left me hanging. The silence eventually got to me and I dozed off as well, until a doctor so politely woke me with questions. She really was polite about it, but she sure did scare the crap out of me. We've had a relatively smooth day as far as exams and procedures go. Other than vitals, the nurses haven't had to do anything. We gave him a complete scrub down from head to toe so that he is squeaky clean for the morning, and as usual he acted as if we were torturing him slowly. I sure hope that once he can have a real bath in a real bathtub that he begins to enjoy them. The only issue that we have had all day is dialysis. At home we use a company and machine called Baxter. We know this machine in and out, and could probably work some of the alarms in our sleep. At CHOP, however, they use a program called Fresenius. I have heard very little about this other than it is completely different than Baxter. The first issue was figuring out the connection needed to go from their machine to his port. Their typical connections are not made to fit the port that he has in his belly. Once we finally got that figured out, we had to figure out how to transfer his dialysis prescription into their machine. We finally had all of the kinks worked out, hooked him up, and I was feeling much better about the situation. About 15  minutes into the treatment, the machine alarms and says "watchdog alert". I mean, REALLY? Apparently it was a malfunction with the machine, not with him, so now we are patiently waiting for a new machine to arrive. Now my nerves are shot again. I am not a person who is fond of change, and dialysis is nothing that needs to be toyed with, especially tonight. The nurses are working on getting this issue resolved as we speak, so hopefully they come up with a solution and quick. Parker on the other hand is oblivious. He has no clue what is going on, other than he is laying on his pillow, watching Little Einstein's on the Ipad. I like that he has no clue what is going on, though. That is how I would like it to stay. Hopefully, all of this will be a vague memory to him, and our lives can become a little more "normal" after tomorrow.

We are set to be first case as far as I know, so I will post more in the morning.

These are his machines for the night...dialysis, vitals, and feeding machine.

His very last night of dialysis-hopefully ever!

No comments:

Post a Comment