"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Friday, October 26, 2007

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FRIDAY, NOVEMBER 02, 2007 05:37 AM, CDT
Rough night. Not sure what was going on but it was exhausting. He finally threw up just before three.


Conway is all set up to see the opthamalogist, Dr. Tyson, on Nov 19 at Children's. The First Steps OT is coming to do her eval on Nov 12 and then the meeting to develop his "plan" is tentatively set for Nov 14--the same day as the Chevy's Fundraiser Night!

The home health nurse came today and he weighed 21 lbs. 2.5 oz. (I guess thanks to me mistakenly overfeeding him for five hours yesterday!). Next week he will hopefully get round two of his RSV shot. He'll get one every 28 days until March.

Celeste threw up again on the way to school today due to carsickness. What is it with our family and throwing up? Well, I'm off to do more laundry and then lay down for a bit since they are both napping--a rare event!


Much improved night. He was sleepy and in bed by 7:30 and woke up around 10 to throw up and get his pants changed. At 10:30 he still hadn't settled down but after a bm he finally drifted back to sleep. That's when I discovered that his pump was still programmed for his daytime, bolus feeds. That meant that for the past 5 hours he'd been getting more than double the amount of milk. Talk about a full belly. I felt horrible. I turned off his pump for a portion of the night to give him a break. He did wake up around 2am and I changed his pants but I think he was getting hungry so I turned his pump back on (was planning on 3 am) then and he fell back asleep. Then he woke up just before 6 pretty nauseous and vomited and then got clean bedding and clothes and went back to sleep. It's 7:50 now and he's still asleep. Cece is on her way to school.

Today we're calling to set up the Opthamalogist appt. and the home health nurse is coming around 9am to weigh him. I forgot to add to yesterday's update that at the neuro's office he weighed 20 lbs 15.6 oz. The little chub is growing everyday!

I also want to thank Aunt Barb for the added support at the office visit yesterday and for the Halloween book. The girls loved it--minus the scratch and sniff skunk!


Well, getting to Children's and back is harder than I thought. We left at 12:15 for a 1:30 appt and didn't get home till roughly 10 minutes to five! What a long day! It was worth it though because we got great news! Of course they can't predict the future or anything, but they basically expect Connie to continue to improve and that there is no reason why he would hit a "plateau" of sorts or stop improving at a certain point. They are pleased with his interaction and the fact that muscle tone-wise he is a little floppy rather than a little tight. They are taking him off the anti-seizure medicine. We will wean down to one dose/day for the next five days and then be done. Stopping that drug abruptly can actually cause seizures so there's no reason to risk it. They said we are on the right track focusing on getting the ball rolling with the various therapies, and that the number one focus should be on getting both OT and Speech Path services to work separately and together with Conway. They also referred us to an opthamologist at Children's where we will have his eyes checked. We still had some vision concerns due to the fact that when he reaches for objects he sometimes fumbles around for them like he can't quite see where they are exactly. The neurologists want to have his vision checked but they believe that the issue is more that his muscles are too weak to go straight to the object rather than his vision is impaired. So that's good news. We can always get muscles stronger!! Anybody know a good personal trainer? Just kidding!

Bottom line: The seizure was a product of the big surgery and his body's response to the major shock of it all and the delays we are seeing are not caused by the seizure, but also by the surgery itself (bypass and what-not). This is kind of what we were led to believe, but they reinforced that today. While post-op seizures are not common, they are definitely not unheard of. The neurologist said they see lots of kids in Cardiac ICU with seizures after surgery and even in the PICU. There is also no reason to believe (some, but little research has been done in this area) that Conway is predisposed to seizures or that he'd have another one after the next surgery. Again, all good news!

It was a whirlwind after we got home to get dinner and get out the door for trick-or-treating. Poor Celeste got carsick in the traffic on the way home from school so she threw up all over her costume and we had to do a quick wash to top it all off! Connie barely fit into the elephant (I figured we could squeeze him in just long enough for a picture) but he was a trooper. He was so tired (ala the bad night last night) but he hung in there while we waited for Sissy's costume to get clean. The whole time Mary Kathleen was hopping around in her bunny costume. Greg had to carry her pumpkin bucket because she wouldn't touch it. I guess she's got a fear of jack-o-lanterns! Pics of the kids will be on the site in a minute. . .

Happy Halloween!



Rough night. He woke up every hour until 4. He didn't cry for long each time but was pretty needy. Needing new pants, needing music turned back on, etc. I'm not sure how, b/c his diaper wasnt' very wet, but somehow he managed to soak his bedding and needed new clothes and sheets/blankets. At 4 he woke up and I could tell he was nauseous. He wanted to be held and I held him and he quieted but couldn't fall back asleep. Finally about 20 minutes later he threw up and was able to sleep for about an hour and a half until he woke up with wet pants again! By then I had to get up to pump anyway. So much for our routine!

Tonight the plan is for Greg to take the girls trick-or-treating around the neighborhood while Connie and I hand out candy (well, he'll be home with me anyway). Celeste is going to be a witch, Mary Kathleen a white bunny (surprise--she's obsessed with bunnies) and Connie will be an elephant.

We go to the neurologist for the first time today. The only way to get in to see him before January was to make an appointment with one of his neurology fellows during a fellows clinic that he supervises. So, today we will see the fellow, Dr. Smiser, and Dr. Noetzel. I actually glad that we'll get two minds rather than one. My hope is that they will take him off of the phenytoin (anti-seizure drug) and offer some sort of help toward rehabilitation. We'll keep you posted!

Just got word so I'm posting it here even before the email goes out. . .

A fundraiser for Conway has been set up by my teacher friends (thanks Carol!) at the St. Charles Chevy's Fresh Mex on Wednesday, November 14th. If you eat there between 4p-10p a portion of the proceeds will benefit Conway to help cover medical expenses not covered by insurance. If you've signed the guestbook in the past, you'll be receiving an email with the formal invitation and an attachment to print out and bring in with you. We will be there and hope to see you there! Tell your friends and family!

We are also switching Conway updates to a new site soon. We will be posting the link on here very soon. Again, thanks for keeping up!

Greg and Erin


TUESDAY, OCTOBER 30, 2007 06:47 AM, CDT
Good night again. Connie had a little nausea and phlegm come up early and then threw up a lot at 6:40am and then back to bed around 7am after a change of clothes.

Going to try to give meds BEFORE the 9am feeding, probably a little before 8, and see if that helps.


MONDAY, OCTOBER 29, 2007 04:17 PM, CDT
The 9am feed came up and he tried to bring back up the 10 am meds but had no success with that! Since then, he's held down his big feeding at noon and so far it is 4:15 and he's kept down his 3pm feeding as well. That drug Enalapril should be great because before we were having to give 5mL of Captopril 3X daily and now we only have to give 1mL of Enalapril 2X daily. That should help to prevent the upset stomach some. The only bummer is the copay is quite a bit higher. If it means he vomits less it will be well worth it!


MONDAY, OCTOBER 29, 2007 06:26 AM, CDT
Great night. Around 2am we had to change clothes and bedding 2X (threw up) but other than that and a couple of diaper changes, he slept well.

Please pray that today he is able to keep down his medicines and three bolus feeds at 9a, 12p and 3p.

Connie is stopping the drug Captopril today (blood pressure--3X/day) and starting the drug Enalapril. It does the same thing, but only has to be given 2X/day. My hope is that he will be able to go off the seizure med, Phenytoin, after our neuro appt on Wednesday and also go off of Spironolactone (the potassium sparing diuretic) and that would put him on only 5 meds, I think. We'll keep you posted on that!


SUNDAY, OCTOBER 28, 2007 08:11 PM, CDT
Another video from Grandma and Grandpa's:

View this montage created at One True Media
My Montage 10/27/07

Connie had a pretty good night. He seems less responsive today. Pretty sure he feels crappy--maybe it's his new teeth. But he's thrown up several times and they've been quite a bit more volume than we were getting used to.
Will watch this and possibly have to make a call to the GI doc if it continues. He's just not the smiley, playful kid he can be/has been the past week or so.

SATURDAY, OCTOBER 27, 2007 05:50 PM, CDT
Grandpa took some more video:

View this montage created at One True Media
My Montage 10/27/07


SATURDAY, OCTOBER 27, 2007 09:52 AM, CDT
Pretty good night. So far he only threw up three times yesterday and once so far today. He has had two bolus feeds--one yesterday at 3p and one this am at 9a. So far he's done well with them. He did throw up after the 3p, but not until 4:30 or so. He got up a couple of times wet and dirty but went back to sleep fairly easily.

He's doing well today and Mary Kathleen is going to a fall carnival and lunch with her friend.

Have a good weekend!


FRIDAY, OCTOBER 26, 2007 02:31 PM, CDT
Back from the GI doc and getting blood drawn. The wonderful tech at St. John's got his vein on the first stick!! She said that she wouldn't stick him unless she had a vein and that if she couldn't find one, she'd send us up to the PICU (intensive care unit where they do them all the time).

Here's what we changed: We are giving the Reglan at 3a, 9a, 3p and 9p instead of 4, 10, 4 and 10. That is so that at two of his bolus (sp?) feeds that med will be on board first to help prevent the vomiting. His feeds have been changed to 60 ml/hour from 4p-6a on the continuous pump and then at 9a, 12p and 3p he'll get 100 ml in about 1/2 hour or so. So, other than those three feeding times during the day, he'll be off the pump. Obviously this is not permanent and we are to call her if he is worse, etc. She wasn't wanting him on continuous feeds forever, it was just to get him growing and give him a break from the fill up/throw up routine he had going on when we got home from MI.

We also talked about the g-tube. She said several things about it. She said she's not in a hurry to do it. She said he's going to be tough to make it work b/c the pacemaker blocks the access. She said that she's fine with keeping the NG tube as long as we're fine with it and as long as Child Development is fine with it. When I told her that a good 80% or so of his vomiting is just phlegm and how hard it is for him to get up, she kind of was of the opinion that he would do better without the tube. If Child Development tells her after our next appointment with them that they feel like the tube is hindering his ability to tolerate oral stimulation, then we will pursue the g-tube straight into the stomach. She said it isn't permanent and when he gets to taking enough calories orally that we just "deflate the balloon and pull it out" in the office. The surgery to put it in only takes about 10 minutes (of course longer to prep, etc.) and he'd stay in the hospital overnight just so we can learn how to use it. That would get that darn tube out of his nose and give him some relief from the drainage at least. The downside is that it may not be able to be done at St. John's b/c they do not have a cardiothoracic program and anesthesia there may not want to put him out in case something happens heart-wise he'd need to be someplace that could respond to a heart crisis, such as Children's. It doesn't matter the hospital necessarily, it's the fact that he has to undergo a general anesthesia and surgery again. Today was his last day for oxycodone (so now we're weaned--yay!) for crying out loud and we're already talking about surgery again. Ugh. The fact that he's "high risk" to put under. I just wish he'd eat. But I fear she's right. The longer the tube is in, the less he wants anything to do with oral stimulation. That's the other reason we changed his feeding schedule. At Child Development he did so well with the oral stim, but his pump had been turned off for two hours before we got there so he was a bit hungry. At home, he's not doing well with his "homework", working on putting cold water in his mouth via spoon, finger, toy, because he's never hungry. So, now that he's on a few bolus feeds/day, we'll do the homework right before the feed starts so that he'll be hungry. There. Now we just have to hope it works!


FRIDAY, OCTOBER 26, 2007 06:05 AM, CDT
Really good night. He fell asleep early, around 7 or so, but then was up at 9. Just before 11 he went back to sleep and again woke up just twice with wet pants. It is after 6am and he's still sleeping, no early morning nausea yet!!

We go to the GI doctor today, Dr. Brady. Connie also has bloodwork ordered from Dr. Bromberg. The bad thing is they have to do a venous draw, not a heel poke. Heel pokes give false numbers for potassium, which is what we are checking on. Then we are spending the day at Grandma and Grandpa's house. I am a little overwhelmed about all that has to be packed, but it will be worth it for a change of scenery!

There are new photos up on the photos page. . .Check them out!


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