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.

Article on Congenital Heart Defects

This link is to an article about a recent study done on the brains of babies with CHD's. I saw something about it on the news yesterday so I looked it up to get more info.
Article, Titled: Brains of term infants with heart disease resemble those of preemies

I'm not for sure, but I don't think that Conway's specific heart defect puts him at risk for the type of in utero brain damage they are talking about because he was not cyanotic at birth and never had or has low oxygen saturations. The babies in these studies had transposition of the great arteries (NOT Congenitally Corrected Transposition, like him) or Hypoplastic Left Heart Syndrome. Both conditions usually run kids in the low 80's for oxygen sats and his have always been in the high 90's (100 is best). Anyway, I thought it was still quite interesting and I was excited to see something in the news about CHD's. Anything that brings this issue to the forefront is worth passing on, I think. No offense, but I'm sick of seeing all coverage that autism is getting when it affects a reported 1 in 150-166 children and no one ever talks about congenital heart defects and 1 in 100 births has one and many don't make it to one year of age. Why the American Heart Association spends less than 1% of its donations researching or promoting awareness about CHD's is beyond me. Okay, I'm done with my soapbox for tonight. Thanks for reading!

Good News All Around!

Today was a great day and very reassuring for us. First we saw the GI doctor where his weight has again increased and she is very pleased with that. We told her about his progress with oral motor stimulation and what the child development people said and she was even more impressed. She said they are usually the ones pushing her to have the surgical g-tube placed in order to get rid of the ng tube but if she said they must really have hope for him and that they are not usually that optimistic. That made me feel good. I told her that they wanted a goal of his to be to get onto bolus feeds (like every three hours rather than continuous) so we changed him over today. He will get 100mL at 7a, 10a, 1p, 4p, 7p and 10p. If he throws up less than an ounce each time (less than 1/3 of the feeding) then in about a week we will try giving him 120mL every four hours for a week or so and then if that goes well we'll try the 150mL just five times per day. That would be our goal. I am to call her in about a week to let her know how it is going or sooner if he's not tolerating his feeds.
Next we had a Physical Therapy Evaluation by First Steps. The therapist came to the house and I had to wake Connie about 1/2 way through his nap so it took him a few minutes to really get into it. She was very surprised after reading the therapy notes from the hospital how much better he was doing now. Rather than rating his skill level at a certain age range, she was more comfortable just labeling him as "a weak baby" right now. He is doing some things around 4 months or 5 months, but he has a lot of emerging skills that he can't get full credit for on the rating scales because he doesn't do the entire skill or task. We're focusing now mainly on trunk and head control. His legs and lower body are stronger than his upper body and torso. She gave me lots of positions to work him in and ideas for home therapy. Monday we will develop a plan for future therapy visits and I'll get the report in writing about today's visit.
Overall it was a great day for Connie. Everyone who sees him is impressed. Even other parents in the waiting room! Oh, and the Synagis shot is scheduled to be given Tuesday. Finally!
Side note for all parents out there: There seems to be a consensus among those in early childhood that the bumbo seats and bebe pods are not very beneficial. Everyone who has dealt with him since we've been home seems to agree. They don't help a child learn to sit at all. They do help children develop head/neck strength, but that's about it. So, if you're on the fence about buying one, skip it.

Child Development Update

I just returned home from Conway's appointment at St. John's Child Development where he was seen by an OT and Speech Path to work on his oral motor skills and feeding issues. The waiting room was crowded so I explained his situation regarding the Synagis vaccine for RSV and they let us wait in their conference room instead of out with all the other kids. Wasn't that nice? Renee and Joann were very pleased to see that he shows no reservations about having things in his mouth anymore. He was accepting of the spoon and the chew stick the whole time. That is very awesome progress. They added a tiny drop of apple juice to the ice water we are spoon feeding him and he seemed to like that, smacking his lips a lot and cooing. He does have a "delayed" swallow, which means he needs lots of time between each "spoonful" of water to process and swallow the water. He tends to let it all pool up in the back of his throat and then it becomes overwhelming to him and he gags and sometimes vomits. We're hoping that at the next visit we'll be able to do the swallow study where they add some barium to the water and take an x-ray while he's being fed to see where the liquid goes. Some kids don't send it down the right pipe, so to speak, and so very much volume would be unsafe (aspiration danger)to proceed with. Today he still has that cold so he had a lot of mucous back there that he just couldn't get down. Joann tried using the percussion instrument on him (beating on his back to initiate a cough) which worked, but it also caused him to throw up the 12 noon feeding. All over himself and her! Mom and I thought it looked like a lot of milk (and phlegm) but Joann said that it was probably only about 15cc's. That was very reassuring to me to hear that because I feel like he really isn't throwing up all that much maybe. Obviously he's gaining weight still so that's good. We go to the GI doctor tomorrow where we will ask about increasing his bolus feeds and eventually getting off the continuous overnight feeding pump. Our goal, according to them, is to keep practicing oral stimulation with him and get him to tolerate us adding some flavored juices to his ice water and to increase the amount of bolus feedings and decrease or eliminate the continuous feeds. The filling the belly, emptying the belly thing (rather than 1/2 full all the time)is a more normal thing and so that's what we'd like him to be able to do. They do not feel at this time that the G-Button (tube in stomach) is the answer. Since they see progress they want to keep going this route (NG tube).

Action!

Connie had his Parents As Teachers visit today. He woke up early from his nap with nausea just before she came and wasn't "on" so to speak. He did reach for things and play a little, but acted like he could do without any of the fuss. I think he just wanted to go back to bed so half way through that's where I put him. Mary Kathleen enjoyed it thoroughly as she was introduced to the wonderment of scissors. I was told she "handles them quite well" for her age and experience (lack of). She practiced some more tonight. The other thing they have her working on is using tongs and tweezers to pick up small things. Great fine motor practice!

This afternoon Grandpa George watched them while I went to the grocery store. It was my first time in one since August (Greg's been making short trips here lately). Weird feeling. One I could do without frankly, but the family's gotta eat! I wish I could take a yearly, 3 month sabbatical from grocery shopping. Just not if we have to go through what we've been through just to get out of it. When I got back from the store Connie was more animated and lively-and for a longer period of time-than I've seen him since before the surgery.

I contacted the insurance company (apparently the phones are slower toward the end of the week) today about his Synagis shot to prevent RSV and they told me it could be up to two weeks!! I was livid and called the home health nurse and the pediatrician. Hopefully with them both on it, something will happen sooner.

Improving

Connie's cold seems to be improving tremendously. He still has a lot of junk but the bulb syringe and vaporizer are a big help. Last night he slept from 7:30-11. Got a diaper change and slept until almost 2. Had a small vomit and fell back to sleep until almost 5. Got another clean diaper and slept until 7. It was great.

We're waiting on the RSV vaccine for this month. The shot is supposed to protect against it for 28-33 days and so should be given every 28 days. He hasn't had a shot for 34 days and is now unprotected. All because insurance is dragging their feet on coverage. It is such an expensive shot they won't even ship it to the home health company until they approve it. I asked about paying it out of pocket and getting reimbursed later and our nurse said it isn't possible. I asked her what this means for him and she just said strongly to NOT TAKE HIM ANYWHERE. We don't have big plans on shopping or other outings and haven't since we've been home, but he does have two appointments at the end of this week where he'll be exposed in doctors' offices to whatever else is there. One of them is at St. John's and that means walking through part of the hospital to get there. Yikes! Isn't that frustrating? I mean, they covered it last month, why aren't they covering it this month? They did the same thing with the drug Prevacid. He got a scrip for it last month and they filled/approved it and now they won't approve the refill. Ridiculous. The home health nurse suggested calling insurance myself which I've attempted before and had no luck. You sit on the phone for over an hour without ever getting to a real person and there is no menu shortcut to actually get a person. I've emailed questions via their website which have gone unanswered. Ever since Anthem took over for Blue Cross/Blue Shield it has been this way.

Busy Boy

Here's a movie of Connie playing in his high chair after he woke up/threw up this morning. He had a better night, only throwing up around 11pm or so. He woke up a few times for a clean diaper, but other than that was restful.

Busy Boy 11/6/07

New Appointments Made

Conway will be evaluated at home by the First Steps Physical Therapist on Friday afternoon. Then on Monday the Occupational Therapist will do her eval followed by the Family Planning Meeting where Connie's therapy plan for services will be created by all those who will work with him. It's shaping up to be a busy week. Wednesday Parents as Teachers is coming. Thursday is the OT/Speech visit at Child Development to work on Oral Motor and Friday we have both the GI doctor visit and the PT eval! Crazy!

Giggling with Mommy Nov 5, 2007

Sleep at Last!

Connie got a lot more sleep last night. The trickle down effect was that we did too!He went to bed a little before 8p. He woke up at 11p, 1a, 2a, 4a and 5:30. Two of those times he threw up (one required a change of clothes/sheets) but then he went back to sleep easily. The other times he needed new pants. I'm always shocked when he has poop because I've never heard of a kid pooping in the middle of the night, but then again, most kids aren't eating all night long like him! That's when most of his calories are consumed so it makes sense that that's when he'd need to eliminate.

As I type he just had a huge vomiting spell. At least the tube didn't come up.
Thanks for checking in.

Weighted NG Tubes Rock!

We are discovering that the NG tubes with a little extension and some weights at the end that goes into the stomach tend to stay put a little better during violent vomiting episodes than those without. 2X today he has thrown up his tube out of his mouth. Next time it gets changed or thrown up we will grab the one with the weights to replace it.

Conway had a pretty good afternoon. He took a nice nap and did great with his "homework" again. We tried the biter biscuit after the water on the spoon and he played with it for awhile and then threw it. Belle (that's our dog)liked that and decided hanging around his high chair was a good idea. Little does she know that he rarely has anything to eat in it! He looked shocked that it was gone so I got him another and split this one with Mary Kathleen. She kept saying that, "When Mookie is a baby she can have a biter biscuit." She hears us say that when she's older she can have things like gum, etc. so I guess she figured if she was younger she would be allowed baby food items. Makes sense to her! He chewed on that one some and then lost interest. Mary Kathleen helped put the spoon to his mouth and he seemed very engaged while she was there helping. Please pray for continued progress in the area of oral motor. He is making progress, but it is slow. It seems we have a couple great days and then a bad day. It is hard to remember how far he really has come. I want him to be all the way back, but it won't be overnight.

Along the lines of progress, I'm happy to report that Mary Kathleen has pooped in the potty for the first time!! She's been peeing for a couple of weeks but today was the first time for #2. She didn't even say she had to or anything. I took her to the potty after her nap and when she said she was all done there was a big surprise for me!

Lord, We thank you for continuing to show us your mercy and love. We know you are working in us and through us, especially Connie. Grant him rest and comfort tonight so that he may continue to heal and get stronger. We are trying to remember to praise you, even in the midst of the storm. Even the storm is a gift. Please bless our loved ones and all those pulling for and praying for Conway. We ask these things in your son's name, Amen.

Vaporizer

If you haven't yet, don't forget to set back your clocks!

We dusted off the ol' vaporizer last night and it seemed to help him breathe somewhat better. I guess it will be out all winter, with the dry indoor air. I forgot that when he was a small baby, still in the bassinett, we had his bed inclined and used it then too. Last night he was up several times fussing and acting like his belly hurt. He finally threw up big time around 5am (6am but with the time change. . .). He lost the tube and all. It was only an hour before we were supposed to turn off his pump anyway so we just let him go to sleep and gave him a break. We figured he wasn't due for any meds for a while and didn't get his next feed until the 9am bolus feed--if he can wait that long--so we'll replace the tube then.

Yesterday evening we took a walk after supper up to the playground. It was pretty dark by the time we got there. Bah Humbug! When we got home we had some hot chocolate to warm us up and then it was time for baths and bed. My cousin Meghan stayed with us this weekend to help out. She and Celeste "camped out" downstairs watching a movie and Mary Kathleen slept in her room.

Sniffles

These pics are of his pacemaker and his pacemaker lead wires.


It seems as though Brother has the sniffles. He generally sounds congested in the mornings after laying all night (even though his bed is inclined) but it goes away after he's up for awhile. Well, today, his nose is like a little faucet. One sneeze and out comes gobs of goo. Not the typical drainage just from having the tube up there. We've gotten out the bulb syringe and are trying avidly to keep all of it from ending up in his tummy or worse yet caught at the back of his throat where it makes him constantly gaggy. He's been sneezing more and having a hard time sleeping more than an hour because all the gunk makes it hard for him to breathe. Please pray that this passes soon and he gets some rest and has an easier time breathing.