November 23, 2005

I just wanted to let everyone know that our surgery date for the placement of the g-tube has been rescheduled to December 16. The surgeon forgot that he will be out of town on the 9th. Of course, he may not be getting the surgery at all depending on the results of the MRI on the 30th. That is next Wednesday. We will know the results on Thursday. I have so many mixed feelings about it. I want to know what is going on in his head--what is happening with the tumor-- so we can have an idea of how long this will continue, make plans for the future---just know what is going on. But the thought of it makes me very anxious and scared too. All kinds of scenarios can play out in my imagination. So I try not to think about any specifics.

Theo is doing much better with his gagging and throwing up since we started him on the prevacid. We are crushing up the little balls that clog up the tube and dissolving it all in water before giving it to him. There is another form of the medicine --a solutab--which we got after we had so much trouble with the other stuff, which was the wrong kind for the pharmacy to have given us in the first place. The solutab is made to dissolve quickly on the tongue and says on the package specifically that it can be used with ng tubes of the size Theo has. The little balls in the solutab are much smaller than the others, but still cake up together and clog the end of the tube--we tried it once and it got clogged but luckily we were able to pull back on the syringe and unclog it. So we took an empty tube and practiced with it over the sink and saw how the little balls clump up together at the end of the tube. Even though they are individually small enough to fit through the opening, once they get clumped up, they stop the flow through the tube. We let the pharmacy know, but I think we will write the drug company. I wouldn't want anyone else to have the same problem of having to remove the tube and reinsert it over and over becuase the medication clogs the tube. So, since then we have been crushing the medicine, which I think probably reduces it's effectiveness-- the instructions are pretty clear about getting the balls in the stomach intact--I think it still has had some positive effect and I really think it has helped him. He seems more content and has not been gagging or throwing up. He has coughed some, but I think that's mostly due to excess saliva in the back of his throat. There has definitely been an improvement and that's been a relief.

Over this past weekend, my good friend Pam came from Indianapolis to visit and she stayed up with Theo over nights so we could get some sleep. It was so nice to be able to go to sleep together in the same bed and sleep all night long! We had a really nice visit. I still feel so tired though. We both feel like we could sleep for a week straight. We're back to our regular schedule now of staying up with him every other night. Lately, Theo has not been sleeping much at night. He has been calm, but awake. And if he is not asleep, we can't sleep. I don't know what it is, he just isn't sleepy at night. He continues to be more fussy at night, but for the past couple nights he has been more calm, but not sleepy. Maybe his brain just works that way now. I don't know. I think he isn't as fussy because the acid reflux is better, but I don't know why he hasn't been sleepy.

My mom is coming tomorrow and bringing a turkey and broccoli casserole. I'm making stuffing and sweet potato casserole with pecan topping. We are just having a very low key dinner. Not a big deal. I feel ok about Thanksgiving, it doesn't bother me to think of having a Thankgiving dinner, but the thought of Christmas coming makes me feel anxious and sad. We have decided not to celebrate this year. Some people have asked me if I will regret not celebrating since it is his first Christmas, but the thought of it being not just his first, but his only Christmas makes it feel really awful for me. He doesn't know it's Christmas anyway. If he was aware of it, things might be different, but he has no awareness of something like that, he wouldn't even be able to see the lights on a tree. So, as long as he is content and peaceful, I will be ok.

I wish everyone a good Thanksgivng tomorrow. Even with the pain and sorrow we feel daily, I am thankful that we have each other and people who love us. We have a warm home, good food to eat and we are both healthy. I am thankful that I have some time with my precious baby and I that I am his mother.

Blessings to all of you--
Love,
Karla