Wednesday, June 02, 2010


In my last post I said that I would check on Evan at 9:30pm to see if his fever went down and stayed down. It didn't. It peaked at 105.1 and we went into fever reducing gear. More motrin, woke him up from a dead sleep to give him a lukewarm bath, started pumping him full of pedialite because he was sweating so hard.

This is the part where I thank the powers that be for the damn feeding tubes. Because even though I hate them and they are the bane of our existence right now, they are the safety net every parent wishes their kid had, right next to the illusive on/off button. When other kids get this sick their parents have to hope they can convince their little one to consume fluids and take yucky medicines. I can, without waking them, administer all the fluids and medicines they need and just have to cross my fingers that it all stays in their little bodies and doesn't get puked up.

Luckily the virus we had didn't come with any other symptoms so there was no extra puking, just scary high fevers that would come and go. We did go to the ER because that's what the advice nurse told us to do, but that was a waste of time and money. In the end they took blood from Evan, kept us until 3am before sending us to Children's in DC, who also did nothing before sending us home at 7am on my request. By midnight Evan's fever had been maintained, but the ER doc at the local hospital felt that his white bloodcell count was much too high (about 20,000 to the 4 to 11 count it should have been) and insisted on sending us to Childrens in DC. Children's felt that we'd managed to get the fever down, couldn't find a cause for a bacterial infection so deemed it viral and said we'd have to wait it out.

By Saturday afternoon Cameron also had the virus and his fever spiked as high as 103, but never has high as Evan's fever. It took until Tuesday for the fevers to all subside. During this period the boys naturally refused to eat or drink anything by mouth (again, thank god for feeding tubes) and we spent the weekend inside with veggie babies in front of the television, because that's all they wanted to do besides sleep. Fine with me.

We did continue to stick with our feeding routine, just with no pressure to comply. I mean, would you want to eat and drink when you're that sick? But because we didn't want to lose the progress we made we continued to try and go through the motions. And surprisingly the boys did eat, just didn't drink anything. They would open up their little mouths and take small spoons full of purees though nothing more than a few grams at a feeding session.

By Wednesday I knew they'd be fine on Thursday but still tired and so we called out the remaining two days of the week and just settled in to enjoy a long holiday weekend. On Saturday we went to dinner at a local Mexican restaurant and Cameron ate a couple of bites of my guacamole and really liked it, which is excellent news because avacado is the best calorie laden food you can give a kid. Monday we went to Mommom and Poppop's house for a cookout and had a nice time. The boys ate a little puree and licked a piece of hotdog too.

Yesterday, Monday, was our first day back and it was like we were only gone the whole weekend. But because of our week and a day missed due to illness they have pushed out estimated discharge date back to June 16th. This is good, and I would happily negotiate they keep us until mid-August if they wanted because I'm sure if we could continue with this intensive program we would see leaps and bounds of improvement.

But doing a program like this is exhausting, especially when there is a long and rough commute involved. If it weren't for the commute I think the boys would tolerate it better. The other thing that has been good for us is that the boys, especially Cameron, can count to 10 very well and know their body parts like mouth, teeth, tongue so they can understand basic commands like take a sip, touch the food to your tongue, kiss the food, touch the food to your teeth, etc. It was coincidental that we taught them these things before clinic, but what a lucky thing to have learned at the right time. While they may not comply, the therapists know they can work with an un-compliant understanding child as opposed to having to teach all those things and then try to make them compliant.

This is a painfully slow process to get the boys eating. But so far everyone at the clinic is confident they will be eating lots of foods very well by age 3. But the most surreal thing is to actually HAVE to go buy baby food because they are consuming it and not because we are just going through the motions to offer food that will be refused. They are eating. The boys combined eat about one ounce of pureed foods a day. That may seem like nothing to you, but it's everything to me. It's an ounce of puree food more than they consumed before. In fact, this morning Cameron ate 2.5 ounces of yogurt before refusing any more. HUGE!

So now I go to the grocery store and I buy six jars of baby food instead of two to last us three days. Pretty exciting, very surreal at the age of two.

And because I haven't posted any pics in a long time....


Trish said...

Holy cow, I didn't know they had all those curls!

And YAYYYYYYYYY for an ounce of food (and 2.5 oz of yogurt.. that's amazing!!!)

Glad the boys are doing better health wise, too.

Maybe when they're all 3 and eating like piggies, we can throw them in a baby pool with food and just enjoy the show.