Wednesday, November 23, 2005

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--

Friday, November 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 --

Friday, November 11, 2005


Hi everyone--
Again, sorry it's been so long since the last post, things just get so hectic, and not a lot really changes with Theo. He has been breathing a little easier, although he is still having those problems. The only time he doesn't have the breathing issue is when he is sleeping. That's how I know he has awakened--when I hear the wheezing, I know he is awake. Even when he is awake and calm, he has noisy breathing. It definitely gets worse when he is agitated, but he does do it a little bit all the time. When I took his tube out to change it last weekend, the brething problems abated for the time I had the tube out. So I am pretty sure the tube is making this worse if not directly causing it. I think the tube might be causing him to constrict his throat muscles or something. When he is asleep he is completely relaxed and so the airway is totally clear. He also continues to gag occasionally with his feeding or when we give his medicines. He hadn't done it for several days but then gagged several times on Thursday and spit up twice.

After thinking about all this and really weighing all sides and talking with our home nurse and our nurse practioner at MCV, I called and set up a surgical consult with pediatric surgery to schedule the gi tube placement in his stomach. Our consult is for next Wednesday the 16th at 1:40 p.m. Dr. Hanes with MCV pediatric surgery will be seeing us and doing the surgery. Our home nurse Donna recommends him very highly. I haven't met him yet, another surgeon did the Hickman surgery when we were in the hospital.

I'm not looking forward to Theo's having to go through another surgery, but I want him to be as comfortable as possible and in the long run, I think it will help him breathe better and to have his feedings without gagging or throwing up. I think the tube in his nose, which goes down his throat is just irritating him. I don't really understand the throwing up and gagging, because he only does it occasionally and the majority of the time, only when we give certain medicines--the docusate and the phenobarbitol--but once he does it once, he gets agitated and then tends to have problems coughing and gaggin for several hours with feeding. We have had to slow his feeds way down or try to wait until he is asleep to feed him when this happens. I just hope the surgery for the placement of the gi tube in his belly goes well. People keep saying how simple a procedure it is--and I'm sure it is, but it's still surgery and he will have to be under anesthesia and have pain afterward and heal and there are certainly risks. I do feel though that it will better for him eventually. I'm pretty sure the surgery won't take place until after his MRI on the 30th. The nurses said that Dr. Hanes would work around that.

Other than that, not much else is happening. Theo weighs 18 lbs 2 oz now and looks healthy. Jamie and I are continuing to take turns staying downstairs with him and he sometimes has good nights, but often is very fussy and uncomfortable, crying and arching his back, tensing up his muscles. He has increased his agitation again in the evening and we have had to give him his morphine and ativan more frequently. We can't stand to see him upset and crying, especially when there is nothing we can do to help him or even know what is wrong. I think it's mostly jsut a weird cycle that he gets in. He tends to do very well in the mornigns with few problems, he hardly ever cries or gets upset in the morning, even when we change him or dress him or give him a bath. As the day goes on his crying and agitation increase. Night time is the worst. When we stay with Theo downstairs we get 2-3 hours of sleep, and that is scattered over the whole night, so we are basically sleeping every other night. We try to take naps during the day when we are home with him as well. We are just kind of used to being really tired all the time. Afternoons is when it really gets to me. I feel totally exhausted around 4:00 p.m. every day. There are a lot of ups and downs, mood swings, and of course the inevitable tears which seem to just spring up out nowhere. Sometimes I can talk about him and what has been going on or see a baby commercial or whatever and be fine and then other times, I'll just immediately feel the tears come to my eyes. There is also the love I feel for Theo that still makes me very happy and grateful to be his mother. But always, always there is this sadness and heaviness in my heart that never goes away. I know a lot of you have been really concerned about me and the crisis I am facing on a spiritual level. I appreciate your prayers and the messages some of you have sent me by email or comments or in cards. Knowing you care and knowing you are thinking of me, of all of us, is a great help. I don't think anything I have been feeling is unusual. I'm sure it's all normal--that doesn't make any of it any easier. I have felt less angry over the past couple weeks. But I am so acutely aware of the tragedy in our world. On great and small scales. I know that what we are going through is only one small drop in the huge ocean of pain and grief and sadness, need, sickness, hunger, injury, fear, death, lonlieness, abuse, and on and on. Knowing that our pain is only one miniscule addition to the whole does not lessen our terrible pain in the least, but it underscores, I think, the great magnitude of suffering that happens all over our world all the time. And I never really felt the impact of that suffering, of others' pain, of the human situation until now. I knew it was there and I even thought I was enlightened about all the suffering of others, quoting the Bhudda and such, feeling secure in my spiritual beliefs and I had no real idea of what true suffering could be, or what it really meant. I don't think I will ever understand why, not just in our case, but for all of it, and I am certainly nowhere near being through the pain, and there is lots more to come, but I do feel less anger. I don't know what that means either, I guess it's just another phase, more feelings to feel, to go through. I know that I will never be the same as I was before this happened, I am changed and I think that change is something that is ongoing.

Thanks everybody for the cards and well wishes that continue to come in. It really does help me to know that people are thinking of us and loving us and holding us in your hearts.

I'll keep you posted--

Wednesday, November 02, 2005


Sorry it's been a while. Time just gets away from me sometimes. I don't have time to post while I am at work and when I am home with Theo, I don't want to leave him to spend time at the computer.

Not much is going on right now. We did get a futon over the weekend which is so nice. Jamie has a friend who is living in England and her boyfriend is here. They are in the process of getting rid of things so that he can move there with her and after reading the post where I mentioned it, she offered us their futon. We picked it up on Saturday and I got a new mattress and cover. This was great because I could afford to get a much nicer mattress than if we had purchased the whole thing new. Thanks so much to Gemma and Corey for giving us the futon. It has really made staying downstairs with Theo at night so much more comfortable.

Theo has continued to have some difficulty with his feedings and at times when we give his medications--although only with the phenobarbitol and the docusate. He gags and sometimes throws up during feeding or right after his meds are given. He also gags a lot when he is the least bit agitated so we have to slow his feedings down quite a bit and turn the feeder off when he either throws up or seems like he is feeling uncomfortable. So there have been days when he is beign fed for very long periods and times when he hasn't gotten all his food because he can't tolerate it. Or we wait for him to be asleep to feed him. It never happens when he is asleep because he is so relaxed.
He has gotten better with the strange breathing pattern, which I think I mentioned earlier, but still does it occasionally. Our nurse called the doctors last Thursday when she was here--we made a tape of it at it's worst and played it for her. It sounds like he is struggling for breath or like he is having an asthma attack, but there is nothing wrong wih his lungs. Like the gagging thing, it only happens when he is upset and never when he is sleeping. It seems like an airway obstruction that happens when he is agitated--or maybe he gets agitated because of the breathing problem. He has done it less this past week and has seemed a little more calm overall. The doctors said that if he starts doing it more frequently, including in his sleep, to bring him in, but until then, to continue to monitor.

Not much else to report, I have been up and down, as usual. Halloween was really hard. I didn't think it was a big deal, I got all the way through the day at work with all the kids I work with dressed up and having a Halloween party, and had no problem. On the way home though, driving down the street, I saw all the little kids in their costumes holding their parents hands and their treat bags, tromping up steps and dancing down sidewalks and just started to cry. I actually bought Theo a costume in August before this ever happened--a little black sweatsuit with a skeleton printed on the suit, but I left it in the closet. I didn't want to get him dressed up, I just couldn't bear it, plus he hates to have anything pulled over his head.
I heard on the radio the other day part of a reading of a work by C.S. Lewis, A Grief Observed, written after the death of his wife, and in it he says, "nobody told me grief felt so much like fear" and it does. The same sinking feeling in your stomach, the butterflies, the uneasy, queasy feeling in your gut, uncertainty. It is the very same physical feeling. Especially the feeling in your belly, that turning, anxious feeling. Except with fear, there is a something to be afraid of, a thing your fear is directed toward and you know you are afraid, and eventually the fear is resolved. That feeling in the pit of your stomach that comes with sudden fear generally goes away and you feel relief rush over you that the threat is gone. Grief is that same feeling, but it doesn't go away, there is nothing that can take it away or bring relief. When I heard the reading of that excerpt, I thought, "He is exactly right. It does feel like that".

Anyway--I will try not to go so long in between posts. I know so many of you are still praying for us and sending good thoughts and I continue to be grateful.