Going "Home"

The results of Ellie's blood and urine cultures showed that there are no infections - the UTI cleared up as well. So the antibiotics have stopped and they are sending us home. It will be nice to get back to our room. Ellie's looking forward to it.

Since Melanie's still here (she's leaving this evening) John and I went out again last night. (That was about the third time we've gone out and celebrated our anniversary because we keep thinking that we won't get another chance...) It's just nice sometimes to get away and wander around looking at things. It was so cold last night, but we had a great time. We were able to see Grand Central Station, and we tried to see the Plaza Hotel (Ellie just saw Home Alone 2 for the first time so we wanted to get pictures). The place was CLOSED for renovation! We went to a side entrance and peeked in the door. It was a lot of fun anyway. Today is our actual anniversary, so we just looked at each other and laughed and said "happy anniversary".

Ellie has enjoyed spending some time with a new friend - John Sumrall. Someone who visits this blog is friends with the Sumaralls, whose son John also has NB. Their family came to NY just before we did, so this mutual connection put us in touch with each other. (Thanks, Janet!) It has been great to get to know their family. John just had surgery to remove his primary tumor, and then has had a round of chemo. He was in the hospital when we went in over the weekend, so Ellie and John spent some time playing leggos. Please remember John in your prayers as well. He's such a little guy to be hit with so much - surgery closely followed by chemo. Now he has a fever...

So far the day has been mostly quiet... mostly. Ellie slept very late, but awoke agitated and with stomach pain. I think that there have been too many drugs all at once, and it's possible that she's developing sensitivities to some things. She also has a little rash... The answer to everything seems to be more drugs, so we're trying to take a step back and ease off because I don't like getting to place where we start treating drug reactions with more drugs if the reactions aren't dangerous. She is doing well now and is playing in the play room. A man is teaching her some things on a keyboard. She has taken an interest in music these days.

The girl in our room is still loud and in pain. I came close to going over there yesterday to comfort her, but given what we have overheard... including a wet sounding cough, I'm too worried about Ellie's well-being to risk it. There's a pretty steady stream of nurses coming and going, doing their best to soothe her. It is just heartbreaking to hear and it makes Ellie nervous. I also don't want Ellie thinking that what she is hearing is an appropriate or effective way to handle pain. She has gotten more upset over things in the last couple of days than she usually would, so I'm afraid some of it has seeped in... I have had to get her to do some deep breathing and calm down while she was calling for drugs. At one point, Ellie was nearly yelling "I want something in my broviac to make me feel better... why won't you believe me, Mom?" while the nurse was standing there asking what she wanted and looking at me to figure out what was wrong with her. My mind was racing to try to figure out what to do. Ordinarily Ellie isn't quite so insistent or vocal, and it was all happening so quickly and intensely. It is so easy to just get a drug to make the crying stop and the pain go away, but I'm not comfortable making knee-jerk decisions. So often with Ellie, the emotions play such a part, that the pain is often much less than it appears. (I have witnessed this from the girl on the other side of the curtain as well...) I had to try to explain to the nurse and calm Ellie down while trying to THINK! Finally the nurse offered to get a hot pack for Ellie's tummy and I got Ellie to start doing her breathing, all the while trying to assure her that I was trying to help her and that I would not let her suffer. Ellie was convinced that she would throw up, so I finally agreed to allow a tried-and-true anti nausea drug. She never needed it. She ate a little bit and calmed down enough that she pushed through it and was fine. I, on the other hand, needed to do some deep breathing when all was said and done! I have realized afresh that I am in a new place and need to establish some credibility as a logical, rational parent who knows her child and is willing to make the decisions that go along with her care. I always feel for the doctors and nurses, though, because every child and set of parents are different in what they want and expect. (Case in point - our poor little room-mate who wants a drug for every little thing... and she wants it NOW!!) It ends up requiring an adjustment period - for both sides. There has to be some trust all the way around - you have to trust them to know their medicine, and they have to trust you to know your child. I went through this in Florida as well - you just have to become a known entity. A doctor came by to look at a rash I discovered on Ellie this morning. He wasn't too worried about it, but offered to try to find an anti-histamine to help, but since I suspect that it was caused by an anti-histamine and I think that she doesn't take too kindly to Benedryl, I had to gently suggest that we would be happy to wait and see if it would resolve on it's own, given that she wasn't having any dangerous reactions like difficulty breathing. He allowed us to wait and watch. We also had a visit from the nutritionist... more explanations of what we do and why. She was very sweet and offered help in any way that she could... there was only one incredulous comment of "you mean she actually GAINS weight on an organic diet?"

Ok, enough of the venting... I am truly thankful for the care Ellie is receiving. I'm just a little tired from the thinking and watching and communicating. It's all good, though and so very worth it. We are very involved in every aspect of Ellie's medical care. We have not for one moment felt that we are leaving Ellie's medical care up to any one doctor or team of doctors. We feel strongly that we are part of a team together with all of the medical personnel. I have been much bolder in expressing myself since the day early on when I became so frustrated that I actually totaled up the hours Ellie had been alive. It was on that day that I realized that while I have so much respect for all of the medical knowledge and training that the doctors and nurses and pharmacists have, I have studied Ellie for nearly 10,000 hours. I know HER. I know every little nuance of her personality and mannerisms and emotions. That gave me a great deal of confidence to stand up to anybody if and when I need to. I have done it before and I will do it again. For those of you who know me, that is a HUGE testament to the grace of God in my life. If a fly got in my face and yelled at me, you know that I would end up in a corner crying my eyes out. The other beautiful thing that happened during the same time when I discovered that I could stand up to anyone on Ellie's behalf was that I stood up to Ellie and told her in no uncertain terms that I was the one in charge of her care. All suggestions from doctors or requests from her would go through me and I would be the one making the decisions. It was as if the weight of the world fell from her shoulders. It can be such a confusing time for one so young... so many people coming and going - appearing to give orders to me and asking her if she needed something for her discomfort...it implied that she had a certain responsibility to know what she needed. For Ellie, knowing that Mom is the central point from which all things spin seems to bring her a peace and comfort during this crazy time. (In all of this, I should recognize that John is very involved from a big-picture decision making standpoint, but the daily medical decisions fall completely on my shoulders. We tend to divide and conquer, and I simply log more time in the trenches with Ellie.)

Sorry to get off on such a lengthy tangent. I guess I had a lot on my mind... It's just all part of this process. Thanks for being with us on the journey! We love you all.

(p.s. At some point in the middle of this huge post, we came back to the house. Ellie is doing great! She has been dancing around the room, and feeling great.)