Monday, December 19, 2005


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.



ROBIN said...

No apologoes are needed from you. I think you are right to say how you feel and and that it is good you can talk about it. I've been reading about Theo from the begining, Going through this part of your life caring for your dying child, - I could not imagine holding anything back. Speak loud and clear. I don't know you, I only met you once, the Friday before this tragedy unfolded, but I love you and your family, and I keep a picture of Theo on my desk at work and Napi and I keep a picture of him at our home, Circle School.

denise said...

Hi Karla-
I know of you thru mutual friends. I am a new mom as well and a Nurse Practitioner at UVA in neurosurgery. I have been following Theo's blog since the beginning. You are such a great mom and strong woman. I think of you, Jamie, and Theo often even though I don't really know you.
I wanted to comment about your recent feeling regarding Theo's surgery and hospitalization. I can only imagine your frustration and fright that no one updated you regarding your son. Tears came to my eyes thinking of how your stomach must of dropped hearing he was already in his room. However, i don't think it is because of theo's condition that that happened. Of course I don't know for sure but being a medical provider of course we always want our patients to be cured, to be healed, to get better. Working in neurosurgery myself, often my patients don't get better, often we only give them a few extra months or year of quality time with their families and loved ones. For these patients I want them to receive almost better care than my patients that are quaranteed to get better. I truly believe what your doctor told you although only he knows the real conditions that prevented him from communicating with you.
On the flip side, i have been in your shoes. Two years ago i had complications with a pregnancy. After a D&C i felt that my MD and her staff dropped me completely to deal with their fun pregnant patients. I was really pissed since what i had was life threatening. Who knows why her staff was so incompetent.
And you are right, discussing death is never easy especially when dealing with a baby. It never will be easy since those 2 words shouldn't belong together. Just know that many people, those who know you intimately and those you may never meet like myself, think so highly of you and Jamie and wish the best for Theo.

Susan said...

I also have a child to whom terrible things happened when he was a baby. Unlike Theo, my son survived and is now a 39 year old who is not more than 2 mentally. I agonize with you over this, but I can't stop reading what you write. When my medical nightmare began, I was torn between wanting my beautiful, smart first-born son back and, knowing that it was not to be, hoping he wouldn't survive. People want to be sympathetic, but the truth is we are all as helpless as Theo is to do anything to change what happened, and we simply don't know what to say or how to say it. I would give you one piece of advice: celebrate the days that you have--even Christmas--because those memories will be precious when they are all there is. Put a little Santa hat on Theo's head and snap a picture, sing carols to him, and above all love him and know that, in his own way, he loves you back.

Betty said...

Dear Karla,
I SO want to wish you a Merry Christmas and a Happy New Year. But all those who have kept up with your blog know that these wishes are somewhat tainted due to your "situation".
You are right when people do not want to look at, deal with or address the matter of death. Even those who are specialist in that field know that it makes them look at their own mortality, and that can get a little scary.
Theo's illness has brought you much wisdom. I know that it has come along with great pain; that is the way most wisdom comes. Someday, you will be of great value to another hurting soul. Another day in your life you will be able to help someone and understand like no one else can and be able to talk about real grief. Grieving for those while they are dying. Grief of the loss of those who are the most innocent. Grief has a great purpose in the human life and you have written so beautifully your feelings, your challenges, your fears and your day to day stressors with Theo. I am sure there are MANY "other" things in your life that crowd in like meals, laundry, bills, family etc. etc. that you rarely write about.
My heart goes out to you, my prayers have been with you since the beginning and will remain with you till the end. I salute you for your strength and endurance, for your tenacity and most of all for the heart you have that is so full of love.

Su said...

Dear Theo, Karla, Jamie,
want to wish you 3 all the best from just around the corner. More power to you. Su Boer, Anna and Nils