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

11/18/2005

We had our surgery consult on Wednesday the 16th. Theo was great the whole time--from the minute we put him in the car seat and went to the hospital until we got home, he was very calm and content. He even went to sleep in the examining room. We met Dr. Hanes who seemed very nice. He says the the gagging and choking is due to acid reflux which is common for babies in general, but highly common in babies with problems like Theo's--it's most likely a nuerological issue. He also told us that having a g-tube placed in Theo's belly may not fix that, and could possibly make it worse. He also feels that the procedure is not a simple one and carries many risks which bear serious consideration. I was glad to hear that my worries about the seriousness of this surgery were not unfounded--I have heard so many people tell me how "simple" the procedure is. Dr. Hanes also believes the best course of action is to wait until the results of the November 30th MRI to see what is happening in our special baby's little head. If the tumor is growing quickly and the prognosis is a few months, he doesn't feel the surgery is worth the risk. General anesthesia carries many risks and the surgery itself, Dr. Hanes said, is very painful afterward and can take a while to heal. There are also the risks of infection, and all the other risks surgical procedures carry. He said that if the tumor is very slow growing then he will go ahead with the placement of the g-tube in the belly. If by some remote chance there is no evidence of tumor, he will place the g-tube and do another surgery called the nissen fundoplication (sometimes called "the wrap" or "fundo") where the upper part of the stomach is wrapped around the lower part of the esophagus. This would add to the risk considerably but treat the reflux. And I hope that this will not be the option. The only way that he would do that procedure is if there is no tumor. I have said before that my biggest fear right now is that the tumor will not come back and Theo will be left to live his life this way. Dr. Hanes referred to his brain damage as the "neurological devastation", which it is. Nobody had said that before. Everyone else (medical people) either avoids prolonged talking about the brain damage or will say, "the injury" or "the insult". So anyway, he scheduled him for the surgery for December 9, just in case, but whether he actually has the surgery is subject to the results of the MRI.

In the meantime, I still don't know what can be done to help Theo with his breathing issues--and neither does anyone else--I asked that specific question twice and never got an answer. I know his breathing issues are completely caused by the irritation of the tube in his nasal passages and in his throat. This morning I had to remove the tube because it got clogged with these little time-released pellets of prevacid which we were prescribed to help relieve the reflux (we later got the right kind straight with the pharmacy). When I took the tube out, we realized that was our last tube so Jamie had to go to the place that supplies all Theo's feeding stuff to get more tubes--they couldn't deliver till later in the day and he needed food and medicine right away. So the tube was out for about an hour and he had no breathing problem whatsoever during that time. Once he calmed down from being upset about me pulling the thing out of his nose, he slept more peacefully and soundlessly than he has in three months. He was so upset when we had to put it back in and his little nose bled and he was sneezing blood-not a lot, but it upset me so much that I couldn't do it and we had to call our nurse and she came over to do it. She said the bleeding was very minimal and caused by the irritation of his nasal passages. That's the reason that he wasn't going to be able to keep the ng tube if he had stayed on chemo. The risk of infection is high because the nasal passages always get irritated from those things and chemo lowers the white blood cell count so much. So, I don't know what we can do to help him. I just wish he could eat and swallow like normal--but that's pointless to wish for. It just breaks my heart to see him suffer for one second.

So--once again, everything depends on what the MRI will show on the 30th. 12 more days until we know what is happening in Theo's head. We won't know the results until we meet with the doctors on the next day December 1.

Keep us in your prayers--
Love --
Karla