12/19/05

Theo is home and doing very well. We were discharged on Saturday night and got home around 8:00 p.m. He slept all night and most of Sunday as well. He seems to be doing ok with the pain and we're keeping his morphine on about a four hour schedule. We see Dr. Haynes (the surgeon) on Wednesday for a check up and to make sure that everything is as it should be.

Having the tube removed from his nose has already made a huge difference in his comfort level. His breathing is easy now and without that labored sound it had. He hasn't gagged or coughed at all and I'm sure his throat must feel better. And once the site heals around the tube, I think he will feel even better. Right now we have to be careful not to jostle him too much and be very careful when changing his diapers, holding him or moving him. But as long as he gets his pain medication regularly, I think he will be ok. We will probably start backing off the morphine to every 6 hours tomorrow and eventually we'll go back to giving the methadone three times a day and morphine only when he is very agitated. Prior to the surgery, we were only giving the morphine once or twice a day with the methadone schedule.

I've been thinking about the stress of the whole surgery day, with Dr. Haynes not coming to talk to us, the residents forgetting to put in an order for his medication before surgery to keep him comfortable, and I wonder whether it would have happened if Theo was a child without a terminal illness. I don't know whether it would have been different, but I think it would have. I'm only speculating and fully aware that I am severely biased, but I think it makes a difference. I think overall the medical community has a very hard time dealing with those who are dying. When they are powerless to heal, when all their efforts to eradicate the disease fail, I think the tendency is to move on to those patients whom they can heal. I think it is much easier to be less invested, or to "forget" about a patient's family waiting to hear about the results of a surgery which will not heal their child, but only make him more comfortable--which is not a small thing, it's quite a lot, in fact. I have heard nothing but good things about this doctor, particularly his bedside manner and the way he deals with patients and their families, which is why we chose him to do Theo's surgery on Friday. To forget about us, to fail to update us on how the surgery went, how Theo was doing, where he was being moved and when, seems very out of character compared to all I had heard.
I wonder if this situation is more of a general reflection on the medical community and society's discomfort with death in general and particularly the death of a child. It's not something anyone wants to talk about. When I do talk about it, if I happen to feel comfortable enough to bring it up or if someone asks how he is doing--and it's never a simple answer--and I tell them the prognosis, they immediately get very uncomfortable--even when they already know. Initially they are always concerned and sympathetic but once I say that he is dying or tell them how long we have with him, they look scared and uncomfortable, and steer the conversation to another topic--How Jamie and I are doing, whether we need anything, how work is going, whatever. And then there are those people who insist that I "shouldn't say that", that I should "not lose my faith" and that miracles can happen, that he will be healed and other things. I know some people believe those things, but other people say those things because to talk about the reality of the situation is too stark, too painful, too unfathomable. Even in the hospital, the discomfort on the faces of some of the nurses and doctors is evident when we talk about the prognosis and why we have made certain choices. I know, better than anyone, how terrible it is to think about--it isn't just any child dying, it's my child--but I also need to think about it, to plan for him, to come to terms as best I can before it actually happens. Even though I know that no matter how prepared I try to be or think I am, I may just fall apart--I don't know what it will actually be like when it happens.
I wonder how different all this would be, if death was something that was accepted as part of life in our society, as the sacred passage that it is and what it would be like if we weren't so afraid to talk about it. Dying patients (of any age) and their families should be made to feel just as comfortable and be treated with the same importance and respect as those patients with illnesses can be treated and healed. Don't get me wrong, we have been very blessed to have many wonderful people helping with Theo's care who are comfortable with us and our situation and who are incredibly supportive and understanding--our home health nurse Donna (who is just wonderful and loves Theo so much), Dawn with Noah's Children Hospice care, Dr. Ward, several of our oncologists and the nurse practitioners there, our PICU nurses--any many people in our personal lives who let us talk about it and sit with us through it--but a great many of the health care professionals who have been in and out of Theo's life and many, many people outside the medical field are very uncomfortable around us or would just prefer not to deal with it. And they don't have to, it's just something I think about. Even as I write this I feel the need to aplogize for being morbid, for offending anyone, or making anyone uncomfortable. And I wish I didn't feel that way.

Anyway, I will keep you updated---as always, keep us in your hearts.

Love,
Karla