No news is no news

Maggie had her broncoscopy yesterday. That's the test under anesthesia where they scope her trachea and lungs to see what's gong on. They didn't see anything obvious, which is good, of course, but we don't have an explanation for these episodes she is having. In fact, she had another one this morning. They are scary, especially for her. obviously I didn't want anything to be terribly wrong, but I was hoping for some answers. No news is not necessarily good news. it's just no news.

The day itself was comprised of hurry up and wait. Maggie couldn't eat after midnight and the test was scheduled for 1:00PM. We were supposed to be at the hospital at 11 to get admitted etc. I took her to school for a couple of hours in the morning. I figured having something to do would take her mind off of being hungry.

My plan was to pick her up at 10:30. Steve called from his office and forgot his cell phone at home. That would make it tough to give updates. I told him I would leave early and bring it to him, but I didn't have time to park etc, so he had to come outside and get it. Of course I had to wait for him and didn't leave downtown until 10:25. I had to get to Maggie's school, get her loaded and get and to the hospital in 35 minutes. It wasn't looking good. It was looking even worse when I ran into street closures because of the salesforce.com convention. (The irony of this was not lost on me. Salesforce.com is owned by Marc Benioff and UCSF is now called UCSF Benioff Childrens' hospital after his amazing $100 million donation.)

Despite these setbacks, we arrived in the admitting office at 11:05 and then sat for over an HOUR waiting to get admitted. From there we went to the surgical waiting room - which is a very stressful place. People are either waiting to go into surgery or waiting for information on family members who are already in surgery. Maggie and I picked a quiet corner and zoned out.

Miraculously, they called us on time and up we went. the procedure started about 1:20 and lasted 30 minutes. She was in the recovery room by 2 and they called me to come up shortly after that. Maggie did fine. She woke up and smiled when she heard her music, but she could not keep her oxygen levels up. They were not comfortable releasing us until either they O2 stayed where it should be or the anesthesiologist released us. That's fine, but it took four hours.

Maggie was perfectly fine in every way except her oxygenation.  She is okay today, but it took overnight to get right.Maggie just needed a little boost from the oxygen and she did fine. When took off the oxygen the numbers would drift down again into the low 80's and we'd have to put it back on. It was really a reaction to the anesthesia and having them mess with her lungs.

I suggested we put her in her chair to keep her upright and they agreed. I set up Maggie's talker and she regaled the recovery room staff - and the families of the other kids - with jokes. The nurses were cracking up. One nurse got a pad and paper to write down her favorite joke, which is really funny with the flat computerized voice of the dynavox.

 Why couldn't he pony talk?
It was a little horse.

Particularly funny after a broncoscopy.

Teach Your Doctors Well

Maggie is home again. Woo Hoo! Thanks to all of you for the good wishes.

They changed her to oral antibiotics and sent her home. She is really not very sick. Apparently the broncosopy she had on Wednesday just overwhelmed her. Thursday was rough, breathing wise, and after the chest xray showed infiltrates, the pulmonologist admitted her. She had a rough evening on Thursday, but slept well and was much better on Friday. I know from experience if you don't get out of the hospital by noon Friday, you are stuck until Monday. I started lobbying hard, but it really didn't take much to convince anyone.

Maggie kept busy working the controls on the bed at 2AM. She kept trying to make it move but it was hard work for her. Either she couldn't isolate the finger to hit the button or she couldn't press the button hard enough. She is concentrating in this picture, not sleeping. Once in a while she would get the bed to move and then she could not stop laughing. This is when I knew she didn't need to be there.

I had a huge fight with two young residents on Thursday night. July is a bad time to go to a teaching hospital. All the new docs start on July 1. Not only are the new green doctors a bit over anxious, there are the newly promoted 2nd and 3rd year residents who are preening for the new docs.

It felt like the more senior resident was conducting a class for the younger doc entitled, "I will show you how to deal with a parent." Perhaps her heavy handed techniques which included doses of parental guilt and scare tactics work on some parents. Me? Not so much. I changed the curriculum of that class a little bit. Hey, it's a teaching hospital, I was just doing my part.

My husband says after I did my part those two residents are reconsidering their career choices.
I am Maggie's voice - and it turns out she has a REALLY big mouth.

P.S. Shout out to Junior, one of my loyal readers, who IS still inthe hospital with pneumonia. Get well, my young friend. Try moving the bed, it apparently has healing powers.

Alls Well

Thanks to everyone for the good wishes. I was growing increasingly nervous as the day went on. We are home - it's just before 9:00PM, so it was only 6 hours total which is not bad.
The procedure started about 20 minutes late - I was ready for a couple of hours, so that was a nice surprise. Things went about as expected. We didn't get terrible news, which is a huge relief, but things have definitely deterioriated in the last year. Why? Who knows? Some cultures and the test Monday will tell us that. Next steps? Stay the course unless the cultures show something freaky.
I have been pushing for this test for several months. In March (4 months ago!) Maggie swallowed the tip of a syringe. I wrote about it when it happened. Maggie World: No tip required
It never reappeared. We searched for weeks and I called over and over again. The GI doc was sure I had just missed it. The pulmonologist was concerned enough that they ordered a chest x-ray in May, (which I also wrote about Maggie World: Lucy and Ethel) but it didn't show up. They didn't expect to be able to SEE it because it's rubber, but they could tell nothing was plugged off either.
My continued insistence that symptoms were present finally got them to schedule this but the syringe tip alone was not enough. These pesky symptoms had to be investigated. The GI doc told me in pre op he would NOT find that syringe. I said that's fine with me, I don't want it to be in there.
Of course it was there. Exactly where I said it would be - stuck in her esophagus. In fact it was acting as a perfect plug preventing secretions from dropping down into the stomach backing up into her mouth and probably causing her pulmonary symptoms as well. Hmmm. Perhaps they should listen to moms. I did have some basis for this. She swallowed a tooth once before and they had to get it out of her esophagus months later. Her body doesn't work right and things can't go down (hence the feeding tube). That was an “incidental find”, it wasn't causing any symptoms. It was simply the most expensive tooth extraction in history. The GI doc came out of the OR with the thing in a specimen jar and said “You were right, thanks for staying on us”
If that's the root of the problem, she may get better without any more trouble. If she is aspirating, though, as we all suspect she it, we will have a road ahead yet.
But we're back and she's trying to pull her oxygen off and she's driving Steve crazy, so I better go.