Much Improved

The vomiting has decreased significantly since Thursday evening. He did super well holding down his bolus feeds yesterday and only had a tiny amount of spit (more like phlegmy drool) that came up with each one. He woke up just before he was to go on the pump last night but we're not sure if it was reflux or if he was just hungry. He seemed fine once Mommy picked him up. He slept all night long and woke up around 6:00 am. He had his morning vomit (which was actually smaller than it had been the last several days) and spent the morning playing with his sisters and then went down for a nap. He got his 10am bolus feed and held it down and is still sleeping.

Have a great weekend!

Back on the Pump

Talked to Dr. Brady this afternoon and we came to the conclusion that maybe going straight to 7 bolus feeds from 3 may have been too fast of a change for Connie. He's back to normal wetting and stooling and has kept down his 10am and 1pm bolus feeds minus a little, tiny, phlegmy spit. The new plan is to give him bolus feeds at 10a, 1p, 4p and 7p and then turn the pump on continuous at 10pm until 6am. I did the calculations again and it seems that he went from 1140 mL per day down to 700 mL per day for intake when we switched him over. That is considerable and when the vomiting increased, it's no wonder why he lost weight. Now he'll be getting 960 mL per day. Hopefully he handles it well.

Connie was receptive to some new oral motor stimulation today. Yesterday he loved getting very diluted apple juice mixed with ice water via syringe. He sucked the syringe as I slowly emptied it into his mouth. He was heard swallowing and didn't cough or choke or gag at all (until the end when he spit it all up). He did this for a good 20 minutes. Today he did the same with some pear juice in the ice water and wasn't quite as crazy about the flavor. I filled a medicine dispensing pacifier with the juice mixture and dipped it into the juice and offered it to him. He sucked a little (just the tip--didn't put it all the way in his mouth), but was very eager to do it himself--which he couldn't. I then poured some of the juice mixture into a take and toss sippy cup and gave him some sips. He took four sips/swallows and then lost interest. Tomorrow I'm going to try it with the apple and see if he likes that better. It's amazing ! By this time next week he may be drinking more like 1/2 ounce or so from the cup. We'll see.

Still Waiting

We've called the GI doctor back this morning but haven't heard back from her yet. He received 60mL/hour for 11 hours overnight. He fell asleep about 7pm and didn't wake up until 3:30 with a wet diaper. He went back to sleep until 6:30. Then he woke up wet and very nauseous. He threw up three big times. It came out his nose and everything. Then he took a cat nap after all that work! The pump was turned off at 7:30 and he got a bolus feed at 10am and only threw up a small amount. He just went down for his nap. Will update when we hear back from the doctor.

Good News/Bad News

First, the good news. Well, great news, actually. All of you wonderful friends and family spent a total of $2730 on food last night at Chevy's. That means that they donated 15%, or $410.06, from those proceeds to Conway's fund. Thanks again for the super turnout!

The not-so-good news is that Conway is leaning toward the dehydrated side of things. His eyes are looking a bit more sunken, he hadn't had any bm's for almost 48 hours and his wet diaper output had backed off considerably. Combined with the vomiting, weight loss and sunken in soft spot, the GI doctor decided that he needed to be put back on continuous feeding overnight. We're pretty bummed, since this is a move in the backward direction, but we don't want him hospitalized for IV fluids! She told us to give him a glycerin suppository, put him back on the pump overnight and call her back in the morning to tell her how he's doing. He's already pooped twice since the suppository was given about an hour ago! I'm wondering if he was throwing up everything because he wasn't digesting well and was like a baby that eats too much and spits up. Maybe all that food not moving created an environment where he couldn't hold more volume down. The thing that makes me think it's not that though is that before he was fed each time we check for tube placement and when we pull the air that we put in back out, any milk that wasn't digested would come up and milk wasn't coming up. Usually that means that he's digested the milk, but in his case it's that he's thrown it all up. Anyway, we'll just wait and see what the doctor says in the morning. He's already in bed for the night and now Mary Kathleen found an egg decorating kit and since it has bunnies on the outside she's decided we need to dye eggs tonight. So, Happy Thanksgiving everyone. We'll bring the colored eggs!

THANK YOU!!

Greg and I want to thank everyone who turned out tonight for the Chevy's event! Several people who couldn't make it sent us their love. The staff at Chevy's said they'd never seen a crowd like that for one of their fundraising nights. People who came in said they had trouble finding a parking place and at one point there was a 30 minute wait for a table (and we knew most everyone there!). We lost count somewhere after 130 people! We especially want to thank our dear friend, Carol Stadler, for coming up with the idea and organizing the whole thing. What an amazing blessing to have so much love shown for our family! The best part about it was getting to see so many people who prayed for Connie, the people who cried with us, celebrated with us and continue to keep him at the top of their prayer lists. We know that the baby steps we see every day are the miraculous result of such efforts on your part.
Love,
Greg and Erin

ps. pics to follow. I intended to take a bunch but got so busy gabbing with everyone that I didn't get very many!

Chevy's Flyer

In case you don't have the Chevy's flyer and you plan on dining there tonight, you can download it at:
http://www.rockybox.com/conway/chevys.pdf

We look forward seeing everyone and God bless!

Conway's dad,
Greg

Tonight's the Big Event!

Come celebrate Connie's amazing journey with us tonight at the Chevy's Fresh Mex St. Charles location (you can see it from Hwy 70 near the Zumbehl exit)! A portion of the proceeds will benefit Conway's medical fund to help pay for his RX's, doctor's visit copays and insurance deductibles. One of us will be there the whole time (we'll take turns so that someone can stay home with Connie). We can't wait to see you there!

Brother is still having lots of trouble with the morning feeds. This morning he threw up the entire feeding again. He finally had a bm last night so I know things are finding a way out, it's just that he doesn't keep hardly enough down to leave anything to get rid of.

He and Mary Kathleen were so cute yesterday. Here's a video.

Connie adoring Mary Kathleen

Now Protected From RSV

Conway has been given his November Synagis vaccination to protect against RSV, a dangerous illness that cardiac children are more succeptible to. Since he is so big, he had to get two shots, one in each thigh. Jen, his nurse, said that this shot burns going in. He cried and didn't like it one bit.

He got weighed and his weight has dropped. She was here on 11/1 and his weight was 21 lbs. 2.5 oz. Today it was 20 lbs, 7 oz. She isn't too concerned since he doesn't seem to be throwing up more than before and she said before we get all alarmed we'll see what he weighs next week. I told her that Dr. Brady has adjusted his feeds and he now receives 200 mL less per day with the new schedule.

This morning there was some blood in his vomit. It was bloody mucuous, mostly brown, but a little pink. It was a small amount. I saved the wash cloth and pajamas that it had gotten on and showed the nurse. She said it was probably just some irritation either in his esophagus or his stomach. We are to watch it and call the doctor if it persists or increases.

More Firsts

Today at the park Connie rode on the swing for the first time ever!! He had been in our outdoor swing once or twice just before surgery, but this was his first time at the park (remember he couldn't be out in the heat of the summer because of his heart and before the weather got hot, he was too young for it). He held his head up just great. I wish I had a movie of it. He laughed out loud and smiled when he felt himself moving. It brought tears to my eyes to be doing normal things with him. Since we've been home, every time we've gone to the park he's either been in the stroller on continuous feeds or at home with Daddy napping. This is the first time it felt a little like normal, with both Mary Kathleen and Connie playing and having fun. Then Mook wanted to go on the see saw so I helped Conway sit on one side and they went up and down and had more fun. He is really getting into watching her and is so enamored by her. When she comes near him he tries to grab her and she giggles and thinks it is so funny. She's constantly saying to him, "Connie, watch this!" and then she does some trick for him.

It also makes me sad (self pity, I know) when I think about how some things have changed. As a teacher, I know how crucial it is for a child to have a variety of experiences to draw on for future learning. My fear is that since the kids can't have the same sort of or number of experiences they used to have that somehow their cognitive and social development is going to be affected. Sounds silly, I know, but Mook never gets to play with other kids anymore because we're afraid she'll bring some germ home and he never gets to leave the house (except for doctor's appts and to go out in the yard or for walks when the weather is mild enough). What kind of experiences will they have to draw upon?

Still Sleepy

Connie worked so hard today during his first steps eval that he fell asleep at 5:45pm and is still sleeping now (10:30). I guess on therapy days it's an early bedtime. He missed his bath tonight. I'll have to start getting him ready for bed before dinner on those days from now on!
Cross your fingers that he gets his synagis shot (for RSV) tomorrow afternoon. It was supposedly overnighted today and should arrive tomorrow.
Thanks for looking in. Nite!

First Steps Meeting

The team from First Steps just left a bit ago. We went over his evaluations and wrote goals for the next six months. We're planning on him eating orally and cruising up and down the couch by then. Seems almost unattainable at this point, but who would have guessed even a month ago we'd be where we are today? The therapists gave us good ideas of ways to encourage him to do these things we want him to be doing and he will receive therapy services (both OT and PT) once/week for 60 minutes each. Additionally, he'll receive nutrition support from the registered dietician once per month and monthly phone calls from the service coordinator.
So, now the real work begins. We just have to hope and pray that his heart tolerates the increased activity. Don't get me wrong. It's not like he's just been lying still since we've been home, but now that they have given me more ideas, he'll be doing more than before.

Long Winter's Nap

Connie really did go to sleep yesterday at 3:45 pm and not get up until 7am this morning. He woke a few times for a change of pants and had a little gagging (nothing came up) for about an hour between 3-4pm. Other than that, he slept right through. He's had a great morning this morning and is napping now. He has a big afternoon ahead of him. The First Steps Occupational Therapist is evaluating him form 1:30-2:30 and then the whold first steps team, including OT, PT, Dietician and Service Coordinator, is coming to develop his individual service plan at 2:30.

Stay dry and thanks for looking in!

Sleepy-doos

Somebody has big sleepy-doos in his head today (i.e. Connie is sleeping a lot-- whenever the kids are tired I ask if they have sleepy-doos in their little heads). It is now 9:38pm and Conway has been sleeping since 3:45pm. He didn't have much of a morning nap and woke up at 5am and just took a tiny early afternoon nap. I guess he's just catching up. This is the first time I have actually felt a little nervous about him sleeping so much and want to constantly go check on him. I do see him stir and hear him make noises periodically on the monitor but he hasn't even wanted new pants or anything. He held down his 4p and 7p feeds perfectly. After the 1p feed he retched several times but only a little drooled out. I'm just happy he hasn't been waking up after the feeds feeling lousy. Hopefully tonight is better than last night.

REFLUX

Connie's reflux seems to be increasing. Not so much that he's vomiting more necessarily, but he seems to have the discomfort associated with reflux or heartburn a lot more. It kept him up quite a bit last night. He arches his back and cannot get comfortable. He did well yesterday afternoon and evening keeping his new bolus feeds down. I even gave him 120 mL last night at his 10pm feed thinking it would help him not to get hungry overnight. Well, he didn't get hungry, just reflux. He didn't throw up at all though so that was good. Almost all day yesterday he just wasn't his jovial self. He perked up a bit in the evening, but the daytime and late at night he was just unhappy/uncomfortable. Who knows. Maybe we'll see another tooth here soon.