Thursday, April 30, 2009
Anyway, the hearing exam did not go exactly as planned. Here's what's supposed to happen at one of these things:
The audiologist puts little plugs in Connor's ears that are attached to a sound system. An assistant has a neutral, fairly unexciting toy (in this case a duck sock puppet) that she uses to keep Connor's attention relatively up front. The audiologist uses a tone or calls Connor's name and it sounds in one of his ears. Then the assistant with the duck puppet leads Connor's view point towards the direction the sound is coming from. He turns towards the side that the sound came from, and a really exciting toy (I think it was a Pluto surrounded by Christmas lights who bangs together cymbals) lights up in response, rewarding the behavior. After associating turning towards the sound with the interesting Pluto toy, they run the test, making the tone or voice a little softer each time, and that little Pluto goes crazy every time he turns towards the sound. When Connor stops turning towards the sound, they know they've reached the threshold that he can't hear below.
Here's what actually happens at one of Connor's exams:
The audiologist puts little plugs in Connor's ears, which Connor immediately pulls out. The audiologist puts the plugs back in his ears, and I corral Connor's arms. Connor focuses for the next five minutes on getting his hands close enough to his ears to yank the plugs out again, ignoring the assistant and her boring duck sock puppet. He finally gives up and, in protest, stares at the ceiling, the walls, and anywhere he can think to look except for the boring sock puppet. The assistant finally gets out a different, more colorful and exciting toy, which he deigns to look at. The sound goes off, she attempts to lead his view towards Pluto, and he goes back to staring at the ceiling. I physically turn his head towards Pluto, who does his little dance. Connor is fascinated. He then spends the next ten minutes staring at Pluto and signing more, completely ignoring the assistant, the audiologist's voice, and my repeated attempts to get him back to mid-line. Finally convinced that Pluto will not perform on command, he goes back to staring at the ceiling and attempting to remove the plugs from his ears. Then he announces that he has to go potty.
We throw in the towel and schedule him for a sedated ABR. At the end of June.
Wednesday, April 29, 2009
We had two other appointments today-- in urology and nutrition. We'd gone in to the urology department for something fairly minor, but the urologist looked up Connor's medical history, saw he had only one kidney and a recent UTI, and completely freaked out. There was much arm waving and gnashing of teeth and wondering why the other doctors didn't get us an appointment the second they found out Connor had a UTI instead of letting us make one through the slow hospital system. We now have a call in for an appointment to do a renal ultrasound, in which they will check and see if there's any scarring or swelling or weird looking stuff on Connor's remaining kidney, and depending on how that goes other tests may be scheduled. Apparently having a UTI as a three year old with one kidney is rather more serious than I thought.
We walked to our nutrition appointment directly from the urology department. Our nutritionist decided to keep Connor on his current diet, though he's not gaining weight as fast as she'd like. He was putting on the pounds at the snail's pace of 5 grams a day, and now with the g-tube he's been promoted to sloth status at 8 grams a day. This might have been affected by the fact that for the first two weeks or so after the g-tube placement he didn't want to eat anything by mouth, so while he was still taking in calories, it wasn't quite the number of calories he would have been getting had he been eating and also getting food through the tube. Oh well. We'll go in for another weight check in a couple of weeks, and maybe we'll be booking it at a more respectable turtle pace by then.
Connor has a behavioral hearing test (probably a BOA) scheduled for tomorrow. I do not have high hopes for this test, as the last time they tried to test his hearing without using the ABR method he responded as profoundly deaf, when in fact he has a mild-moderate loss. We'll see how it goes-- maybe he'll play along this time. After his test we'll be headed over to Connor's new school district to drop off some paperwork, and then it's back to shuttling loads of our stuff over to the new apartment.
We heard back from the hospital about Connor's g-tube, which has to last us another month and has begun splitting at the intake end. They told us to duct tape it. This will go nicely with the Frankenstein-stitched other end.
Tuesday, April 28, 2009
Monday, April 27, 2009
Sunday, April 26, 2009
Saturday, April 25, 2009
Friday, April 24, 2009
Thursday, April 23, 2009
Wednesday, April 22, 2009
Tuesday, April 21, 2009
Monday, April 20, 2009
Connor's seizures are very scary because they affect his autonomic nervous system, so his symptoms are almost identical to sudden cardiac arrest. Basically he stops breathing, loses conciousness, and goes blue-grey from his head to his toes. They don't really look like seizures at all, which is why it took the doctors so long to diagnose them. I put him down on the office floor and administered rescue breathing until he started breathing again on his own, and then hooked him up to some oxygen until his color returned. Then after playing the "the party you are trying to reach is busy, please hang up and try again later" game with the neurology department down at Madigan for ten minutes or so, I stuck the little guy in the car and drove down there. I stopped by the pediatrician's office, got Connor's weight, and then went across the hall to neurology and left a note for the doctor, who got back to me a couple of hours later and made an adjustment to Connor's medication.
It's hard to know exactly why he had the seizure, as his weight really hasn't changed all that much. Part of it might be the illness and surgery-- we know that stress can lower the seizure threshold, and those things certainly have been stressful. At any rate, hopefully the new medication dose will keep him seizure-free, which would be really, really good for all parties involved.
Because of the seizure, Connor was sleepy and irritable for a good portion of the day. Towards the evening he started feeling better, and when we put him down for bed he didn't fuss at all. About ten minutes after we put him down he started crying very suddenly and I went in and discovered to my horror that he had his hand wrapped around his g-tube. He'd yanked some of the tape off and the stitches had come free, but thankfully that was as far as he'd gotten. If his g-tube comes out before six weeks have gone by, he has to have surgery all over again, so thank goodness we caught him in time. We retaped it up, and I'll be calling Children's in Seattle tomorrow morning to see whether or not we need to bring him in to have the stitches redone.
All in all, it was not a day I would like to repeat any time soon.
Sunday, April 19, 2009
Saturday, April 18, 2009
Friday, April 17, 2009
Thursday, April 16, 2009
Tuesday, April 14, 2009
Monday, April 13, 2009
So I'm not going to have a Medical Monday. I'm going to take a break and talk about another theme that for some reason pops up periodically in this blog: poop.
That's right. This is yet another post about poop.
So Connor has been having some GI troubles lately. Prior to his g-tube placement, constipation was the issue. Well, no longer. Now on any given day I'm changing between 6-10 diapers. This is not particularly my idea of fun. I'm going to tell you about an event so horrific I believe I am now traumatized for life. The squeamish may wish to go find something else to read. It's not going to be pretty.
The day that shall forever go down in infamy as the day of the Poop That Would Not Die started out pretty much like any other day. Of course, Connor did have that as-yet-undiagnosed UTI and so was rather crabby, and also I'd already changed four diapers, but other than that we were just going about our usual business. Jer was away at work, and Connor and I had just eaten lunch. I was happily sitting with one hand tucked under the little guy on my lap at the computer desk, checking my e-mail, when Connor's rear end emitted the kind of noise that makes scientists monitoring volcanoes push the big red alarm button and run for the hills.
Connor, who felt that the noise might not have tipped me off, immediately stuck his hand down his diaper and emerged with unquestionable and very disgusting evidence that he needed changing. He's into experimenting with exotic flavors right now, so the hand immediately headed towards his mouth. With a grimace of horror I grabbed his wrist and held it away from his body. I then gingerly picked the little guy up with the other hand and trotted down the hallway to his bedroom to change him.
Unfortunately for me, I neglected to do two things: oversights which I would have ample cause to regret later. The first that was while maneuvering Connor out of my lap one-handed, I failed to keep him perfectly level. The second was that I didn't pin his other hand.
I got about two thirds of the way down the hallway when I realized that the hand underneath Connor's rear end now seemed to be damp. I glanced down and saw to my horror that my entire hand was now covered in what looked like chocolate syrup, and not only that, but we had left a trail all the way down our beige carpeted hallway. I sprinted the rest of the way into Connor's room, leaving poop puddles in our wake, and plopped the kid down on one of his washable rugs.
I now had a dilemma. I had one free hand, currently covered in poop. The other relatively clean hand was clamped down on Connor's wrist. After ineffectual attempts to get Cricket to dial Jer on the phone (if little Timmy fell down the well, Cricket would shove the well cover the rest of the way on and take a nap on top of it) I finally managed through a creative use of diaper wipes to at least rid my hand of the worst of the damage so I could concentrate on getting Connor cleaned up.
I wiped off his hand, cleaned up his rear, took off his soiled clothes as well as mine, bundled all of them up in the now soiled rug, and threw the whole mess into the washer. Then I scrubbed my hands, started a bath running, found the carpet cleaner and took care of the poop trail that led all the way back into the office. I grabbed Connor and plopped him in the bathtub, which is where I realized that his OTHER hand was also somehow completely covered in poop. Connor got a thorough scrubbing. I gave myself a quick bath, dressed Connor, and then set him down clean and wonderful into his crib so I could put away the cleaning supplies and get dressed.
I was in the bathroom, reaching up into the cabinet above the toilet, when I happened to look into the mirror. I froze.
There was poop in my hair.
Not just a little bit. There were large streaks of poop all down one side of my head, lovingly applied by Connor, who apparently wanted to spruce me up a bit and thought dramatically stinky lowlights would be just the thing. Being a reasonable, intelligent adult, I did the only thing possible in this situation.
I freaked out. I believe my exact words were something along the lines of:
Some people just can't stand roaches. For other people, snakes cause them to leap in terror atop the nearest available chair. Not me. I have no problem with any creeping, crawling arachnid, insect, reptile, or rodent. I'm the type of person who not only carefully catches jumping spiders and deposits them gently outside my house, but then I go look them up in my identification book so I can call my Dad and tell him about them later. Well, I have now discovered my phobia. Poop in my hair reduces me to a gibbering, frantic crazy woman. Thank God my razor was in the other bathroom, or I probably would have grabbed it and shaved myself bald.
As an aside: I think they should make you sign a contract before having children. It would contain a clause saying: "WARNING: HAVING CHILDREN MAY CAUSE APPLICATION OF POOP TO YOUR HAIR." Give it to the girls on prom night and watch the teen pregnancy rate plummet.
Anyway, back to the story. I hurtled into the shower, my screaming now interspersed by language that I will not be recording for posterity, and turned the water on as hot as it would go. If it was possible using only hands and a washcloth to scrub one's hair and scalp completely off, I would have done it.
After having shampooed and rinsed my hair for the eighteenth time and inspected it minutely to make sure not a single particle of offending poop remained, I toweled off, got dressed, and dragged myself back into Connor's room. Connor, no doubt resenting not only my leaving him in his crib for so long but also my rejection of his hairdressing attempts, was pitching a royal fit. I leaned over, picked him up, and singing him a little soothing song, bounced him on my hip.
He pooped all down my leg.
Sunday, April 12, 2009
Saturday, April 11, 2009
Connor was much improved this morning; his fever is completely gone, he ate more than he has in weeks, and he seemed pretty chipper. We took him into the doctor's office about eleven, and the poor little guy recieved two more big shots of Rocephin, which he didn't appreciate at all. I'm told that those shots hurt like a son-of-a-gun. The blood cultures were still pending, but we've got another appointment tomorrow and we'll find out what, if anything, showed up then. For Easter Sunday Connor will recieve yet two more shots in his much abused little thighs. Poor guy.
Friday, April 10, 2009
Of course, since we took him to the doctor today, he had a better day than he's had in weeks. He was smiling, cooing, and just in a generally good mood right up to the point where we started prepping him for a blood draw. Then he was the Saddest Boy In The Universe. He perked up after we left the doctor's office, though.
We got a phone call this afternoon from the doctor with the preliminary results from the blood labs. Apparently Connor's white blood cell count (WBC) was really high. The doc said that Connor's WBC should be somewhere between 5,000-15,000 cells per µL (microlitre). Connor's is currently at 27,000. We're not sure what this means right now. The doc said it could potentially have been caused by the stress of drawing the blood, but she didn't think that was likely. It could be an indicator of an infection, though it doesn't tell us what kind of infection or where it is.
To play it safe while we wait for the cultures to come in, they gave him two shots-- one in each thigh-- of an antibiotic called Rocephin. Connor was not thrilled with this, but he calmed down pretty quickly afterwards.
We got back in the car around five thirty, drove back to the gas station, and while sitting there in the car Connor proceeded to have a full melt-down. He's been Mr. Crabby Pants ever since.
We'll go back into the doctor's office tomorrow to find out the results of the cultures. Hopefully with this massive dose of antibiotics, he'll be back to his old self in no time.
Thursday, April 9, 2009
- Typically with a virus, a fever should only last 3-5 days. Since Connor has been running a low-grade fever since April 2nd, this is too long to be just one virus, though it is possible that he had a couple of viruses back to back. He'd also spiked that really high fever on March 27th that we ended up in the hospital for, but there were a couple of days in between where Connor didn't seem to be running a fever, so that may not be related. Of course, he was also on some pretty massive doses of Tylenol, too, so who knows.
- Connor has had GI issues since his surgery on the 23rd. That's way too long to be having those issues without a cause other than a virus. They've slowly gotten worse over the last week or so too, not in frequency, but in, um...consistency. (Ew. Sorry.) If it was an issue with his new diet, we probably wouldn't be seeing that change, nor should he be running a fever.
- Since he actually had an incision made to put the g-tube in and it wasn't a "blind" insertion, then it's not likely the issue is something like the surgeon accidentally causing a perforated intestine-- an extremely dangerous situation where there is a cut in the intestine wall that causes leakage into the body cavity. Connor's incision site on the outside looks good, too-- no signs of infection that Jer and I can see, though the doc will take a look at it. However, since he's been running a fever for this long, it very well could be due to an infection somewhere in the g-tube site, even if it's not showing up on the surface of the skin.
Since Connor's condition seems to be pretty stable right now, they thought it would probably be okay to wait until the morning to bring him in, as long as we were comfortable with that. If at some point during the night he starts getting dehydrated due to the GI issues, his fever spikes really high, we can't wake him up, or his "state of awareness" changes (he doesn't know who we are, isn't aware of surroundings, et cetera) then we'll bring him into the ER. We'll bring him in first thing tomorrow and the doctors will take a good look at him and figure out whether or not they want to admit him, run a bunch of cultures if they can determine the cause of his issues, and monitor him to make sure his electrolytes aren't becoming unbalanced and he's not ending up dehydrated. We're less than five minutes from the hospital, so we're okay with waiting until tomorrow morning to go in.
Long story short, there's a good chance we'll end up admitted back into the hospital tomorrow, and we may be there for a while. I'll keep you all posted as to what's going on with us.
Wednesday, April 8, 2009
This is due to the fact that we brought a tape recorder. The school district claimed that the tape recorder violated their privacy and refused to have the meeting if we were taping. We refused to turn the tape off. So we didn't have a meeting.
I just spent over an hour typing up an e-mail message that specifies under which laws and court cases in Washington state we are given the right to tape despite the school officials' non-consent. That was a whole lot of fun, let me tell you. We're supposed to meet with them AGAIN next week. Jer and I have yet to discuss whether we'll be bringing a tape recorder to that meeting, a stenographer, or just saying the heck with it and going straight to mediation.
I'd like to know what the heck they were planning on saying that they didn't want an audio record of.
Tuesday, April 7, 2009
Monday, April 6, 2009
DISCLAIMER: I would like to emphasize for those people who stumble upon this blog that I'm not a doctor, and I have no medical experience other than the approximately 900 doctor's appointments I've been to in the past two years. I just know about these things in relation to how they apply to Connor and not anyone else's child, so if you want accurate info on this sort of thing, please please please ask your doctor or go to the medical library instead of looking it up on the Internet. The library is your friend.
Sunday, April 5, 2009
Saturday, April 4, 2009
Friday, April 3, 2009
While I was at class, the framing shop called to say that my picture was ready. Class ran twenty minutes late, and I pulled into the framing shop parking lot just as they locked the doors. Let's just say that this was not the most productive day in the world. I now sympathize with those hamsters on their little wheels-- I can relate.
Because of all my errands, Connor had a Daddy day. Jeremy has fun wearing out the little guy, who always has a blast and as a result sleeps like a rock, which makes me happy too. Kind of a good deal all around. Hopefully he'll sleep in late, so Jer and I can too. Otherwise we'll play rock, paper, scissors tomorrow morning to see who has to get up and who can continue to make sure the pillows are functioning properly.
At least I'm officially certified in CPR now. Though I have to say, since I've performed it six or seven times on Connor, I kind of feel like they should give you a free pass or something for that. Apparently the government doesn't agree with me on that one. Oh well.