12/31/2005 New Year's Eve

I added to the page Theo's photo with Santa. We went to have the picture taken following his doctor appointment on December 21 (Winter Solstice). He was so calm and peaceful that day.
Our Christmas was quiet but nice. We were very sad over the holiday. I am really glad it's over. For me, it wasn't so much this actual Christmas holiday, so much as how sad I felt knowing that future holidays will never come to pass. There will be no more Christmases with Theo and so much that I hoped for and looked forward to with his birth will not happen. All the tree decorating, present opening, cookie making, driving around seeing the lights, all the family traditions that we won't be starting with him. Thinking of all those things that we'll never do together made me feel so sad and hurt and empty inside.
We did have a small tree this year and my mom and grandmother brought lots of nice gifts and so did my dad. Theo got lots of cute, cuddly outfits and a new quilt to keep him warm and new books for us to read to him. It was good to have my mom and my grandmother here. We had Christmas dinner and rode around to see the lights on Christmas night. Theo fell asleep on the car ride--he loves to ride in the car. He for sure knows that lots and lots of people love him and that's all the gift he really needs.

Tonight we are planning on staying home with him and bringing in the New Year with him at midnight. He is almost always awake at that hour and we plan on toasting him and giving him the first kisses of 2006. We'll have some champagne and he will have his formula since his last feeding of the day is around midnight. He did get tastes of sugar, honey and chocolate syrup over the holiday--we rubbed a little bit of each on his tongue. He didn't have much reaction to the honey but smacked his little lips over the sugar and the chocolate. I couldn't really tell whether he liked it or not, but at least he got to try some tastes on his little tongue.

I really appreciate all the supportive comments I have gotten from people on email and on the blog about my last post regarding the attitudes and reactions of others to terminal diagnoses and death in general. The support from people who care about us and who have had common experiences, whether with dying parents and loved ones or with struggles with their children with disabilities, is so helpful to me. I am reading several books right now, each a little different, but all having to do with dealing with grief, bereavement and loss, and they all speak of how crucial it is in these situations that the bereaved or grieving persons are not alone, how much the support of others determines how well they deal with the loss or tragedy. Knowing others care about us, empathize and sympathize with us, makes me feel less alone, lessens the pain a little bit. And I know that it will only get worse for us before anything gets better. I know that there will be a time when I won't be able to imagine it ever getting better at all. We're not there yet. I am not looking forward to that time at all, but I am trying my best to be as prepared as I can.

I am slowly I think coming to a place where I am beginning to accept that brain tumors that cause irreparable brain damage and ultimately death--and other tragic things like disasters, sickness, accidents, violence--are not things that God can intervene in--or otherwise He (or She or the Universal Spirit or whatever you call the Divine) would. If I don't believe that, then I can receive no comfort at all spiritually and I don't believe that I could get through this, and all the days that are to come, on my own, without feeling that I can recieve help from some higher power. Harold Kushner the rabbi who wrote Why Bad Things Happen to Good People (and whose son died from a progressive, terminal disease) writes that can believe one of three things about God---that either 1) He is all powerful and sometimes chooses to intervene sometimes not, 2) we deserve what we get and God allows those bad things to happen to us, or 3) there are some things God can't control, things that are subject to laws of nature. Which, in Kushner's view, God created as unchangeable for good reasons--like gravity is a good thing because it holds us all on the planet and keep everything in place, but doesn't get reversed to save a child from falling off the second story balcony. All the things we are taught to believe, if we pray hard enough, if our faith is strong enough, that God can do anything, that nothing is impossible, all those things only set us up for heartbreak and bitterness when they don't come true. Those things cause us--cause me--to bargain with God, to make promises (if only my child will be healed I will do this or that) which is just ridiculous becuase if God was going to do something why would He need to extract some promise from me to do it? To beg God, which is also useless. Those kinds of beliefs cause us--cause me--to only feel abandoned, cast aside, unworthy, alone, angry and then guilty for being angry. Those beliefs cause us --me--to think that maybe it is my fault--maybe I didn't have enough faith. Thinking which then leads to the possibility that the unfaithful are then responsible for teh tragedy out of their lack of faith. I am not responsible for Theo's tumor and brain damage. I would do anything to save my baby and take away all the hurt that he has been through over these past four months. I can hardly believe it's only been four months--it feels like a lifetime. But those kinds of beliefs are useless and dangerous and harmful. And very, very hard to get past. Even when intellectually, I know better. Emotions and desperation have considerably more pull than intellect when your baby's life is at stake and being threatened. And when those kind of beliefs are reinforced by people around us, it only makes it more difficult to resolve feelings of guilt and inner conflict. Do you know that a woman at my job--who I am not at all close to-- actually told me that perhaps it was my doubt that was keeping my baby from being healed? How someone could say such a thing to another person going through the pain of a child's illness and impending death, I can't even imagine doing such a thing. Anyway--I am trying to come to a place of peace, where I can be comforted and strengthened by Spirit. Just my writing all this down tells me that I'm not quite there yet. But the most positive thing I think is that I really believe that my negative feelings are comiong from me, from residual teachings of my childhood that are not serving me well at all now at this most devastating crisis of my life and that behind all these feelings is something else. I think that there is peace and comfort from a Source greater than me and when I am able to resolve my own inner conflict, it will be there for me. Indeed, I am sure that that Source is helpign through all the conflict and searching and confusion that I have been trudging through since August. It's like swimming through mud, trying to get to clear water.

I know that the coming year which is fast upon us will be full of more difficult times and holds a future that I cannot look toward with any hope, except the shred I hold that we can get through it intact physically, mentally, emotionally and spiritually. I know that it will get worse before it gets better, but I know it is possible to get through it--forever changed, but at least intact and still able to live life and find some happiness even if seems impossible at times. I also hope for the continued love and support that all of you have shown us. We wish you all a beautiful New Year of 2006, filled with love and peace.

Love,
Karla

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

12/16/05 11:00 p.m.

I just got home from the hospital. Jamie is staying overnight there with Theo. I stayed up with him last night till about 2:00a.m. and am super tired.

The procedure went really well and he is doing great. He is having some pain from the incision and the tube placement, but as far as I can tell, it only really bothers him when it gets jostled around--like diaper changing or sitting him up if he slides down the pillow. They're giving him his regularly scheduled methadone plus morphine every 4 hours overnight and probably tommorow as well.
They are telling us that he will most likely get to come home tomorrow. When these g-tube placements go well and the child can tolerate feedings well, they get to leave pretty soon. So that's good, it'll just be another thing to feel nervous about learning and doing correctly until we get used to it. It's amazing how used to these things you get--I just have to not really dwell on thinking in detail about what I'm doing--flushing the tube coming out of his chest, pushing meds through a tube in his nose, and now maintaining and caring for the newest tube coming out of his belly--which is placed next to the tube running from his brain into his abdomen...
Anyway--we are really relieved that he is doing so well, especially after the incredible stress of the day. We got there at 7:30 this morning--They called yesterday evening (I can't believe it was just yesterday, it feels like several days have gone by) and told us that he was now scheduled at 9:30 a.m. and was first on the list. So, we were glad not to have to be there at 6:00 and pleased to hear that he was first on the list. We got everything packed up this morning except his medicines because I figured he would be going under anesthesia before he would start to miss his morning dose of methadone and then after that, the hospital would supply all his meds. Well, of course, you know that went wrong. I should've known better. We waited in the lobby area for a couple hours and then went back to the holding area where we waited another couple hours. An emergency procedure had come up that had to be attended to first, which was entirely understandable, I was just concerned about Theo getting hungry and cranky and especially that he had not had his methadone at 9:00. They told us they would order him something to "take the edge off" and forgot about us for another hour. By 11:00 a.m. he was missing his second meal of the day and still hadn't had any drugs. So after having asked twice with no results, I got really upset and nearly turned into Shirley Maclaine in "Terms of Endearment" demanding medication for Debra Winger (if you haven't seen that movie, see it--it's great, plus you'll know what I'm talking about). Finally, they came in and gave him some versed--a medication that puts you in la la land pretty quick and he was fine and then we were fine. I really hate getting like that too--I just don't understand why they can't understand what we might be going through. They took him back for the surgery at almost noon. They told me it would be a couple hours and then he would go to recovery. We weren't allowed to go into the recovery room with him but they would call us as soon as they were getting ready to go up to his room so we could walk up with him. The surgeon was supposed to come out and talk to us after the procedure to tell us how it went. We went down to get something to eat and were gone about 30 minutes. They give you these big round pager things (like you get at Outback steakhouse that blink and vibrate and beep obnoxiously when your table is ready) so they can get in touch with you when it's time for the doctor to talk with you or whenever they need to get you for something. The pager didn't go off and didn't go off and continued to not go off--so finally at 4:00 I went to ask the desk woman to please find out if things were ok. She couldn't figure out who "Theeolonus Figbar--Fegbeck--what is his name?" was, finally located him and said, "Oh, he's been finished, he's up in his room on the 7th floor". I could feel my eyes get all big and crazy, and I almost couldn't form a question, but finally asked how long he had been up there, and the desk woman said, "Just ask the nurses when you get up there how long he's been there". She didn't even know what room. I was incensed. Livid. I mean, who does surgery on a 7 month old child and doesn't come tell his parents how he is or even that he is out of surgery?! And then takes him to another floor, to a room without a number and doesn't tell anybody?!
We went up to the 7th floor and, of course, had to stop first at the security table. They had no record of Thelonius Fueglein in their patient book, they didn't know where he was. I just about lost it and the security guard said, "Just go on back ma'am, and talk the nurses". We found him finally in a room with three other babies. I was so relieved and so totally pissed off at the hospital. He looked really tiny to me in the big crib bed, but he was alert and calm and his color looked very good. He was fine. The nurses told me he had been up there for about a half hour. They finally got the doctor on the phone and he apologized several times saying the whole thing was his fault, that he had been called away to an emergency and he had told his staff not to talk to us becuase he was going to come right down and talk to us as soon as he took care of the emergency situation and then he simply forgot. So, there we were. I was still really upset. Everyone on the floor was super nice to us after I expressed my frustrations and the nurses and the other doctors on the floor seemed very sympathetic. They gave us a private room. The staff have all been extremely attentive all evening. Theo is doing ok and that's the most important thing. So that was our surgery adventure for the day.

Tomorrow we will learn more of how to take care of and use the tube. The one that is in there right now is a temporary one --kind of like starter earrings that you get when you first get your ears pierced. You have to leave the starter ones in for a while until the holes heal up enough so that they won't be sore and won't close up when you put the earrings you like better in the holes. We will get a "button" in a few weeks--the button is like the better earrings that you like instead of the ones you have to have because of the new piercing. Right now there is a long flexible tube with a cone thing on the end hanging out of his belly. Once the site heals, that tube will come out and we will go into the clinic and put in a shorter tube with a little button thing that sits flush with the skin so there is no tube thing hanging. When it's time to eat or give medicine you just pop the little cap off the button and insert a tube with an end piece called a key that then turns to open the button and then just put the food or medicine in. When it's done, you turn the key part back to lock, remove it and put the cap back on the button. That will be in about 3 weeks or so. Changing it won't be a painful thing at all--it will really be like changing an earring. We will also have an emergency kit at home to put in a new one ourselves just in case the tube comes out. They told me that until it heals though, if it comes out, we have about 30 minutes to get a new one in before it starts to close up.

It's a wonder people who are piercing crazy don't get this procedure done just for a new, shocking, avant garde body art thing.

I'm really tired now and am going to bed so I can get up early and get to the hospital with Jamie and the baby.

Keep sending us the positive thoughts and your love---
Karla

12/14/2005

Theo definitely has a cold. I said in the previous post that I thought that's what it was at first and then changed my mind, but following that post, he began sneezing a lot and producing tons of snot. He ran a fever on Saturday of 101.7 and threw up several times. When I called the doctor, he told us that babies frequently throw up when they have colds due to swallowing excess mucus. The fever came down after giving tylenol and he slept most of the day and night all weekend. He still has some problems with coughing and gagging with lots of snot, but he is definitely feeling better. Jamie caught Theo's cold and is wearing a mask around the house and in general feels crappy. I have been taking Zicam and that Airborne stuff to fend it off and I think I have been pretty successful, no signs of any cold.

Jamie met with the guy who is putting together the DVD for us and I think it is going to turn out really well. We spent all weekend going through every one of the video tapes we have made of Theo since his birth and all the photographs, picking out the best ones for the DVD. It was really hard to watch the videos of Theo, especially the clips where he is trying so hard to imitate our facial expressions and to talk. Just before all this happened, he had just begun clearly studying our faces and trying to imitate our facial expressions and sounds. There are couple of clips where he is making his "oh, oh, oh" sounds and they just broke my heart. There is one where I am sticking my tongue out at him, rolling it. You know how some people can roll their tongues up? I remember learning in high school how that's a genetic thing. In the video, I am holding Theo on my knees and he is looking up at me while I roll my tongue at him asking him whether he can do it and you can see him thinking so hard and studying my face, working his little mouth and me sticking my tongue out at him over and over and then-- I don't know if it was coincidence or not, I don't think so--but he sticks out his tongue smiling and it is so cute!

Watching him on video evoked the strangest mixtures of feelings, first feeling the happiness, remembering, almost reliving, the feelings of the moment, laughing and happy, proud of his progress and his effort, and then being struck by this incredible sadness and longing for those times with my baby, regreting that they were so short and fleeting, wishing for it all back. Feeling the shaky, anxious flutterings in my belly, the clenching feeling around my heart, pressure in my chest, tears stinging my eyes. Knowing that I will never see him do these things again, that all that is gone. All this while holding my baby Theo in my arms. I looked down at him and it struck me so poignantly how drastically he and we have changed. It is like having a completely different baby. It's as if the baby in the videos has already gone. We have a different Theo and new relationships with our new Theo. And the heartbreak of knowing that the Theo we have now will only be with us for such a short time and then we will have to say goodbye to him too. He is so sweet and soft and warm, every second we have with him is spent holding and caring for him and loving him. Smelling his head, kissing his sweet face, his feet, his chubby little legs.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We go in on Friday at 6:00 a.m. for the g-tube placement. We are both feeling a little nervous about it. He will probably be in the hospital for 2 or 3 days. We just hope that all will go well and that this will provide some comfort for Theo and for us. But first he has to get through the surgery and then the healing. I will post after surgery on Friday afternoon to let everyone know how he is. After surgery he will be in what they call a "step-down" unit. Our home nurse Donna, who used to work in the MCV PICU, told us that a lot of the PICU nurses also work in the step down unit, so maybe he will have some of his PICU nurses who love him so much. That would be a huge relief to us. We'll just have to wait and see.

Please keep us in your thoughts and prayers.

Love,
Karla

12/9/05

Theo is doing ok with his new medications. We have had to give him morphine on an as needed basis mabye once or twice a day. The methadone is given three times a day instead of every 2-3 hours like the morphine. He has had some trouble with the choralhydrate. It puts him to sleep pretty quick, but it really upsets his stomach. As soon as we give it to him he starts gagging and spitting up. Some nights he tolerates it better than others, but it always bothers him. And it's no wonder, it smells terrible, like furniture polish. He usually goes to sleep while he gets his last feeding and then wakes up some time after, sometimes earlier, like 2:00 a.m. and other times around 4:00, so whenever he wakes up, he gets the chloralhydrate and then he usually sleeps till 7:00 or so. Jamie says that when he stays downstairs with him, he sleeps less and always has a horrible time with the chloralhydrate, throwing up and gagging terribly. Who knows what makes the difference from night to night?
Over the last couple days, he has been sneezing a lot and gagging and coughing up a lot of mucusy stuff throughout the day. At first I thought maybe he was getting a little cold, but I don't think that's what it is. I think the tube is just really bothering his nose and throat. So, we are still taking turns staying downstairs with him as long as he continues to have these gagging and choking problems. He has his last feeding at midnight and since he's been gagging, we slowed his feeds down so that it takes about 2 hours to finish, he gets his methadone dose at 1:00 a.m. and then the chloral hydrate at some point during the night after he wakes. We stay with him so we can be right there to sit him up when he gags and to clean him up if he spits up and to give his medicines. We are getting a little more sleep than we were before the methadone and chloralhydrate were added, but he still needs one of us to be right there with him. Hopefully, after the g-tube is in place, he won't have the breathing and sneezing problems although I don't know whether it will help with the gagging. That has definitely gotten better since we started the prevacid, but Dr. Haynes told us the tube may not stop the acid reflux and he might still have those problems even after the surgery. We'll just have to wait and see. Since we are able to sleep a little when he is sleeping, particularly after the dose of chloralhydrate, I think it's been easier. We are both still really tired and mentally and emotionally just exhausted all the time, but I don't expect that to change for a long time.

We have been looking up different video/photo services to put together a DVD of photos and video of Theo with music. That is our latest project. I want to have a little montage of still photos and videos of Theo. We want to use Thelonious Monk's famous jazz composition 'Round Midnight which is, of course, Theo's song since he is has the same name (except without the "o" a the end) and having been born at 12:02 a.m., as well as this really pretty lullaby song I love called Night Owl. We haven't picked a third song yet.

I'll continue to keep everyone updated--please keep us in your thoughts and prayers.

Love,
Karla

12/01/2005

Everything went very smoothly yesterday for the MRI. They were an hour behind and Theo did great. He hadn’t had anything to eat since about 5:00 a.m. and none of his medications but he remained very calm and content until about 11:40 (an hour past the scheduled time for the MRI). I did get a little upset with the radiologist, or rather, I took my frustration out on him, when he came in to get yet another history. Two people had called from the department earlier who wanted to know all his history—the diagnosis, the treatment, the surgeries, and “now, tell me again, why was the chemotherapy discontinued…” . I had asked one of the people who called why, when the whole thing was on record in that very hospital did people continue to require me to tell the whole story over and over. They didn’t have a very good answer and neither did the radiologist when I asked him why I need to give the history 5,000 times. In addition to having talked to those two people on the phone I had not 5 minutes earlier filled out a bunch of papers asking for diagnosis, surgeries, medical problems, reason for the scan, etc and I was very thorough in filling out the form. So when Dr. Whatever-His-Name-Was came in and said, “I just need to get a little history…ummm, what brings you in for the scan?” I just about flipped out. At that point Theo was also getting fed up, was feeling hungry and wanting his morphine I imagine, and he was crying. So that wasn’t pleasant, but I gave him the history anyway, just to get it over with, and of course he was all apologetic, but didn’t have a good reason either for why they can’t just freaking access the history or simply read the paperwork I filled out. Finally, the nurse came in and gave him the chloralhydrate to sedate him. He was totally out in about 2 minutes, went through the MRI beautifully and was able to open his eyes for the nurse to show that he was ok (after a lot of tickling and undressing and rubbing with a cold cloth) and then immediately went back to sleep for about 6 hours.

Today was the big meeting with all the doctors to review the results from yesterday’s MRI.

The tumor shows new growth.

It is back and is currently about one fourth the size it was when it was removed in August.

There is no news that would be good news at this point, but I am relieved that that the tumor is back. It’s a terrible thing to think and to feel, but it is preferable to the alternative. That he would live his whole life, however long it might be, with this severe brain damage, never developing, never growing up, never doing anything more than what he does right now, is unthinkable to me. I would never want a life like that for him. Or for us. So these results today, although heartbreaking and now giving dreaded certainty to our fears--we know now how limited is our time with our sweet boy--at least they confirm that he won’t have to live his life severely impaired, unable to function and with little to no quality of life in the long term. I have so many mixed feelings I can’t even begin to describe all I am feeling, but I can say that relief is high on the list. I am sure that more grief and sorrow and pain and hurt and confusion is waiting in the wings, but I am relieved just to know, to have some concrete knowledge of what to expect and what is happening.

Dr. Ward can’t say how fast the tumor is really growing because they grow exponentially. The new growth started with one cell, that cell divided into two and those two divided into four and four turns into eight and so on. So, the bigger it gets the faster it grows. I asked specifically for a time and he said that he really doesn’t know for sure but if he had to guess he would say three to sixth months. It could be a little longer, probably not less than that.

We wanted to know what to expect when the time comes, what behavior to look for, what symptoms we would see. Dr. Ward said that Theo would get more sleepy, less active, harder to rouse. He might just go to sleep and not wake up, or he may have some difficulty with his breathing toward the end. If you’ve ever been with someone at the time of their death, or very near death, you may have heard that kind of breathing; labored, rattling, long pauses between breaths. He may do that, but he may not. I just hope it will be very quiet and peaceful for him and for us. It’s strange to think how undramatic the whole thing could be and yet when it happens, I just know my whole world will crumble. No matter how prepared I think I am or might be, I know that I won’t really be ready or truly prepared when it actually happens. Nobody ever is.

The ventricles look really good, much smaller than the last MRI done in mid-September before our discharge. This shows that the shunt is working well and keeping the pressure down in his brain. This ensures that he won’t have any headaches, nausea or other symptoms caused by pressure in the brain as the tumor grows.

They also asked about his current behavior and how he’s been. We told them about his sleeping difficulties, his problems with the acid reflux, the breathing problems with the ng tube and about our visit to Dr. Hanes.

Dr. Ward said he thinks the surgery for the g-tube would be a good idea and would ultimately make Theo more comfortable. And if he thinks so, then I feel okay with it. They were all also very concerned for us, staying up with Theo all night, never getting enough sleep. So they spent a lot of time talking about his medicines. They put him on methadone to replace his regularly scheduled morphine. We will keep the morphine and the ativan to give on an as needed basis, if he gets really agiated, but the methadone will be his regularly scheduled pain medication. It’s stronger and won’t need to be administered as often. Although they did say that they don’t think he is in any real pain, that his agitation is most likely neurologically driven—a result of his brain damage. But regardless, the medications calm him and he is definitely more content when they are given. So we don’t care if he is merely being sedated, it is better than watching him cry and scream and arch his back and be overall miserable. The doctors seem to agree. And if there is the slightest chance that he might feel any pain, I want to take it away completely.

When we were discussing Theo’s not sleeping at night I said, half kidding, “Why don’t you give us some of that chloralhydrate, that knocked him right out” and they just said, “Ok, we can do that”. So we now have the chloralhydrate to give at bedtime so he will (hopefully) sleep through the night. It’s a very commonly used medicine for sedation. He got it for the MRI yesterday and had gotten it previously for MRIs while we were in the hospital and my dad said that it’s frequently used in pediatric dentistry, but I didn’t think they just gave it to people to use at home. I guess Baby Theo might be a special case.

Chloralhydrate is very fast acting. It's used in tranquilizer guns to sedate wild animals and is also the drug that people are talking about when they say somebody “slipped him a mickey”. Evidently, back in the day when sailors used to come in for shore leave and pick up “girls”, the “girls” would “slip him a mickey” and then rob the sailor while he was out. So starting tonight, we are slipping Theo a mickey at (our) bedtime and hopefully he will sleep through the night and so will we. Although, for the next 24 hours he has to get his scheduled morphine every 2-3 hours along with the methadone so he won’t have withdrawal symptoms. After we get him on a regular methadone schedule, he won’t have to have morphine every 2-3 hours and we will all be able to sleep through the night—knock on wood and keep your fingers crossed.

That’s about all I have to report for now. His surgery for the g-tube is on for December 16th early morning. That is the next big thing. I will keep up posts in between to let everyone know how he is doing with his new medicines and how we are doing with sleep and everything else.

Please do keep us in your prayers and in your thoughts.

Sending love,
Karla