24...the continued part

>> Wednesday, July 15, 2009

We got upstairs into a room at 1:45AM. So, if we count backward we see that we were sitting in the ER for 7 hours, 2 in the waiting room and 5 in the exam room. Really, it didn't seem like it and Bug was so cute the entire time. He was a really good boy and enjoyed all the attention from the 3 Doctors, 2 Nurses, 1 Admin, and the various other folks that popped in and out.

As far as hospital rooms go, this one was nice. They had the 'bed' pulled out for us already. That's the thing with Children's Hospitals, there are plenty of places to sleep. They suck for comfort but at least you can be there.

Duane settled us in and told us what Bug was in for. Tests. Some yucktastic ones and some not so bad ones. He was going to get a catheter for a urine sample and a nasal swab for respiratory and meningeal viruses (now, I am not sure about the meningeal, but the test was not pleasant).

Bug was given his first dose of Keppra and I prayed it would work. Duane said we had a hour or two before he got everything ready and we all tried to sleep. Glenn had gone home to pick up his phone (I packed a bag earlier in case we stayed the night, mostly because I am brilliant but for sure because I know how Hospitals work)and he got back just in time to catch some sleep. It was 2:20AM.

At 3:30AM Duane walked in. Head to toe in gown and mask. This did not bode well for Bug.

He did the catheter first, Bug woke up. Curious, he usually sleeps so soundly (read that with the most sarcasm you can muster) but was really good about it, fussing only slightly. Once Duane had recovered the liquid gold, Bug went back to sleep. Cool. For a moment it was cool, then it got ugly. Duane pulled out a catheter the length of my hand from wrist to tip of middle finger. He measured Bug's cheek and calculated the length he might need. Uh oh. After he was ready he placed the catheter in Bug's nostril and kept going...and going and then suctioned it to get the sample. So, yeah, Bug woke up and was not happy. He began to cry and Glenn and I did our best to comfort him, but most times, he will not be comforted. We try anyway, just in case it helps. Duane removed the first sample and went in for the second. This one was not as easy, Bug was awake this time and aware of what was going to happen. He put up a little fight, not much, and then it was over. Bug looked at us like we had betrayed him and was praying for our deaths, and just like that, he was back asleep.

It was 4:00AM.

24 hours was complete. A very full, very emotional 24 hours and Bug was none the worse for wear. He was sleeping soundly and without incident. I looked at him, so beautiful in his peaceful slumber and my mind played out all those things that are best not to think about. I thought about what could have changed, about what could happen yet, and I thought about life without him. I pushed those thoughts away and focused on our chance, this chance to actually get something to help, to really work. To bring our little man all the way back. And I curled up on the plastic couch and went to sleep.

At 8:20 the door opened and in walked a different Doctor. Glenn answered all his questions and I tried to go back to sleep. But it didn't work and I jumped in the fray. The one thing that played in the back of my mind was: Glad I left my bra on. Far cry from my early morning thoughts. Go figure.

At 8:45 the Doctor woke Bug up, he apologized as he was doing it and we acted like it was OK, but really, it sucked. Once Bug woke all the way up, the Doctor REALLY apologized. He could see the energy that we had to try to contain. He told us, we would be getting an MRI and an EEG today. Big sigh, gonna be fun. Because of that, Bug had not been fed last night, nor would he be until the tests were complete. Lack of food will piss him off. And it did, but only kinda. He wasn't too bad. The IV was getting in the way but other than being tethered to that, he did really well.

Another Doctor came in. He was not as cheerful as the first. When he asked how Bug had done and I told him he no events. He said good. I said: Looks like the Keppra worked. He corrected me: It's premature to say it was the Keppra. Most likely it was the Lamictal. Glenn smiled and I told him: Yeah, no. He has been on the Lamictal with not only almost nightly events but clusters too. Not break-through events, it wasn't controlling all of them. We liked the Lamictal because it brought our boy back, and we do not want to stop it. But in the past 3 YEARS only Diastat has ever stopped his clusters. ONLY Diastat when he is in Sleep-Seize-Sleep-Seize mode. So I have NO qualms with making the statement that the KEPPRA stopped the clustering.

The Doctor agreed it looked good for the Keppra then. Uh huh. He said it shut me up. I'm no fool. OK, I am little fool. Not a big one though.

Glenn and I turned on the TV as we waited, because we were tired, we didn't realize how loud it was. After a few hours, and a few more times telling people his story, Dr. Morita came in. I liked her immediately. She was followed by 5 other people, mostly Doctors but one sign interpreter. Didn't get any other names. Who would?

We talked, she talked, we listened, she listened and she examined the boy and he smiled. A LOT. He smiled a lot. And everyone in the room smiled too. He does that to people. It was then, that she asked if we could turn the TV down. For the first time that day I felt like a BIG fool for not noticing that we were all raising our voices to hear over it. Oopsie poopsie.

She told us she saw no need for an MRI or EEG since he had them in the last 6 months. We agreed they were not critical and we talked about the medicinal routine. When she asked if there were any other questions I looked at Glenn, he looked at me and I spoke: I would like to revisit an EEG. SOMETHING obviously changed. He has not had seizures like this in over 2 years and I will not risk losing my boy again. We have seen so many small, but good, advances in him, I want to keep a VERY close eye on what is happening so he doesn't begin to regress again. Since he can't talk and tell us, we have to search for it. I think another EEG is good idea.

I braced for an argument. Didn't get one. She agreed and all the other Doctors agreed too. Cool. They left the room and Glenn and I where thrilled. I had to run back out and ask about a low sodium diet. She suggested that when we see a change with him when we cut back his sodium we should talk him to his pediatrician and have blood work to see where he is at. To make sure he isn't crashing. I said: Brilliant! She smiled. Feeding a Doctor's vanity can work out well. I asked her: Could it also cause a Lamictal overdose? She agreed. Lamictal may be a sodium blocker, so we reduce the sodium, Lamictal blocks the sodium and we have a problem. It was nice to be validated. One does not usually find Doctors like that. We were blessed as much as we were cursed that day.

We arranged for the EEG to be done a week later. I called while we were waiting for our discharge paperwork and scheduled the EEG and follow up with Van Orman's office. When Happy-Morning-Waker-Upper-Doctor came back in, he told me they had scheduled all of it. I laughed and said: I already took care of that. Sorry, I am not used to someone doing it for me. He laughed: We got an appointment for Sept 14. I smiled: I got one for Monday. Not with Dr. Van Orman, but it's a follow-up so we asked for his P.A. is that OK? He smiled: Sure it is! You did better than I did. I apologized. He brushed it off.

He made sure we had the prescriptions we needed and bid us farewell. We got Bug ready and an hour or so later, the nurse came in with his discharge information and prescriptions. We politely nodded and told her we had been through it all before. She asked if we wanted to fill the Keppra downstairs or take it with us. I said: Hmm, maybe downstairs. Glenn said: We have to transfer it then. I said: Yep, we'll just take it with us. She said: OK I will tube it down to them and it will be ready by the time you leave. ??? So let's go then. Um, one problem. His IV was disconnected but the IV catheter was still in place. Oops. She removed it and we put him in the stroller and headed off. He was so relieved. So were we. She walked us to the pharmacy and then took her leave. Glenn and I looked at each other and smiled.

The Keppra wasn't ready so we took him to the car and brought it around to the South entrance.

I waited in line to get his meds. Not something I want to do everyday. I heard: this is to help him feel a little better until he starts his chemo. I began to cry, when in walked a little boy with his Grandmother and Mother. He walked passed me, I smiled and winked, and stood in front of a lady sitting with her baby in a stroller. He said: Hi! She said: Hi! He said: I have a brain infection. I am getting medicine to help me. We don't live here. His Grandmother heard him and turned, I met her eyes and smiled. It was that: he's OK, we are all watching out for him smile. And she grinned and turned back to her business with the pharmacist.

You see, in a place like Primary Children's, all strangers are part of a big family. That family that notices the sign above the door when you walk in: The Child First - Always. And thinks that these people will understand and will help my child. They get it and I love them for that. This family that looks at all the children running, riding or crawling in those rooms and thinks, I wonder if he wants a cookie?

And we went home.

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