My mom and dad left today, but Ronnie and Tracy are still here. We had a kinda lazy day truthfully. Ronnie stayed with Kevin all afternoon and I took a nap, which was super wonderful. And even Kev didn't get dressed or anything until like 5pm today. At that time we just brought him down for dinner and then we watched a little bit of TV and took him back up to the hospital at 9pm.
I am getting even more nervous the closer we get to Thursday. I am just not sure how this is supposed to work. From what I am gathering (and nobody has explained the surgery yet - even though I have been asking for two months now) they are planning to change the shunt first and drain all the excess fluid off and then put the flap back. I don't know why, but it just scares me that this isn't really a 'fix' for the issue, it's just a 'we aren't really sure what to do so let's try this' situation. I guess I am most scared that it won't work and I am just not sure what would be the next step. I mean, do they teach me how to drain his head every day or what? And before I forget - someone did ask if it has become less painful and yes, it has. He rarely cries now and will often just hum the "Subway, eat fresh" song, lol.
I am going to just quickly answer a few questions now:
Kathy - you asked if Kevin has therapy daily and he has speech and OT M-F and PT every day of the week.
Petra - I am really sorry that happened to your M-I-L. I do agree that arrogance in a doctor is often dangerous. The doc we had this weekend made a comment to me that I had to work really hard to not say something back to him. He was tapping Kev and the fluid was moving pretty quickly and we always pull off all that we can while it's flowing. He told me he was going to stop and I told him to keep going while he could and he said "I do have other patients to see too. You aren't my only one, ya know". I couldn't believe it. So I guess it's normal to do a half job on patients if you can't fit everyone into your schedule. Pretty sad, huh? I wonder if he would have put the flap back and not bothered to staple his head shut due to time constraints? (sarcasm)
Someone asked about their air miles and I have never used either Fisher House or Make-a-Wish. I am not sure how that would work so let me know if you can donate to our family as help is no longer available for my family to come down. The one organization that has helped us out in the past is Operation First Response. For anyone else, I will check into donating to them. Even if it's not for our family - I am sure they will find a use for them.
Ok, off to bed for me...
First 2 from the Nov kit!
4 years ago