Bad blogger

Since I am getting nasty-grams from my family for not blogging enough... this is for them. Don't get used to it though, I don't usually bow down to threats that easily! You just happened to catch me at a good time. Craig and Owen went to Target so I have about a half hour to blog just for you, Patrick : )

Owen continues to do just great. We're about 3.5 weeks out of surgery now and at this point there isn't a thing we do differently with post surgery Owen. He climbs, wrestles, jumps and everything else he wants to do without anything bothering him. Oh, and did I mention potty training?

So, about a week or so ago we bought Owen his first potty chair. He's seemed interested in letting us know when he poops or pees at times so we thought we'd slowly introduce the chair and see what happens. We took it out of the box today and Owen was fascinated with it. I told him it was his very own potty and he constantly pointed at it and said "potty... pees" or "poop".  He sat on it a lot with his pants on which is fine. I expect this to happen very slowly and I don't want to pressure him at all. Towards the end of the day I asked him if he wanted to use the potty again. "YEAH!!" was his reply. I thought that was pretty cool so we went inside and I asked him if he wanted to take off his pants and diaper so he could put some pee in the potty. "YEAH!!" was his reply again so off they came. Well, he never peed but he sat on it a lot. Lifted up the lid, closed the lid, would sit on it again. Kept pointing to the inside and would say "pee".  And so it begins.   

Sentences. Well, kind of.

Owen's vocabulary is expanding quite rapidly at this point. We've lost track of how many words he knows (upwards of 50?) but what has been fascinating lately is to listen to him start to put them together to make sentences. 

Here are some recent examples:

(right after surgery)

"Where Elmo go?"

"Night, night mommies."

(when referring to the TV being turned off)

Owen: "Elmo off?"

Me: "Yes, Elmo is off"

Owen: "Elmo on!"

Craig: "Owen, what kinds of food do you like?"

Owen: "Pizza, bock-bock (chicken), cheese, crackers...mmmmmm."

(after waking him up from his nap)

"Bye, bye nap."

And here are a few of the words he's kind of made up:

"Newt-newt" = Fig Newton

"Laquers"=Crayons or colors

"Boot"=Spoon (no idea where that came from)

"Applesop"=Applesauce (he's close!)

"Debbie"=used for any word he doesn't know. 

What pacemaker?

You wouldn't know that Owen had surgery just under a week ago. Other than having some difficulty sleeping through the night, he's back to his old self. Laughing, playing, talking up a storm and is always on the go. The doctors said that we'd probably notice an increase in energy and that Owen would probably have more restful sleeps because he'd be more active during the day once the surgery was over. He was such an active kid to begin with that there might be very subtle hints that his heart is beating twice as fast as it used to but overall I haven't noticed much difference. Time will tell but I think the doctors are used to seeing kids who are very much affected by their heart condition prior to surgery. We caught Owen's so far in advance that he was showing little or no signs of anything being wrong.

His scar from the surgery is about twice as large as I was expecting...around 6 inches which looks huge on a toddler. Fortunately, even though the scar will be quite large, the surgical team did a beautiful job stitching him back up and we've had no issues with it bothering Owen too much. The only complaint we get every once in a while is "itchy".

We're home!

It's finally over. We got home around 2:00 and we are so happy all of that is behind us. Owen will be on antibiotics and Motrin for a little while but that should be it as far as medication goes. He's moving a little slower than normal right now but that's to be expected after the type of surgery he just went through. He also has a pretty restricted level of activity for the next 4 weeks. No climbing, wrestling around, no pools or anything that would soak his incision, no playing on things that he might easily tumble off of and no playgrounds. Basically everything an 18 month old loves ... EXCEPT Elmo! Little did we know how much his Elmo obsession would help us out during all of this (I'm pretty sure we watched "The Best of Elmo" DVD about 30 times while we were at the hospital. Seriously. I could probably recite it for you.). That's usually a bad thing but when you've got a little guy attached to wires and IVs, it's nice to keep him in one place for as long as possible. With the worst of it behind us, we're looking forward to Owen's pacemaker being our new normal. Right now it's hard for us not to think about his incision or the pacemaker inside of him when we look at him. I'm sure that will change pretty quickly.

Owen update: Friday Aug. 29

7am
We ended up having to stay in the hospital one more night. The took the drainage tube out yesterday evening around 5:00 while in the O.R. and while Owen was under anesthesia. Turns out the tube was caught up in a stitch from his initial surgery so they had to open his incision up a little to release it. He did great during the procedure and was only really upset when he woke up in the recovery room and mom or dad weren't there (parents aren't allowed--very busy room with kids recovering from all kinds of surgeries and if anyone needs immediate care, they don't want hovering parents in the way). Once we were up in the room he ate pretty good and drank enough liquids that we were able to take the new I.V. bag off that accompanied him to the room after the tube was removed. This morning Owen seems to be he usual self...hates diaper changes, loves Elmo and wants to go for a walk and has been dancing a little. We WILL be going home today! Not sure what time yet but at this point I don't think there are any other issues that will come up that would keep us here any longer.

Owen Updates

THURSDAY, AUG. 28
1:15 pm
Minor setback. While trying to remove his drainage line, the pediatric intensivist noticed that it was stuck. With kids Owen's age, they typically give him a pain reliever and then just pull the tube out. It hurts to take it out but they're supposed to feel a lot of relief after it's removed. They are thinking that the tube must either be stuck on a suture or wrapped up in something. So, now he will have to go back into surgery mainly because they want to make sure they can give him some anesthesia so he won't feel anything while they figure out what the tube may be stuck on and remove it. This probably means we will be here for another night because we have to wait until around 3 or 4 tonight before he can go under anesthesia since he last ate around 10am. Otherwise, everything is going very well and Owen is still playing and in good spirits. He's starting to get a little sick of being in the hospital (we all are) but after this disappointment with the drainage tube is over we should be headed home early tomorrow.


WEDNESDAY Aug. 27
1:00 pm
Posted by grandma:
Everything is going great! After a round of nurse visits, the removal of his IV lines from his foot and the O2 sensor from his big toe Owen was totally worn out and upset from all the poking & prodding. Though he was pretty upset from all of this, we wanted to get him on his feet now that all of the “attachments” to monitors were allowed to be removed. We wheeled him in one of the wagons down to the playroom. Well, after about a 5 minute look around, he let us pick him up out of the wagon, and after a few wobbly steps he started picking up and playing with toys in the play room. Within 20 minutes, you’d have never thought he was there for anything serious – he was playing with toys, throwing the balls, popping bubbles, -- back to his normal self – it was great to see. He also had a really wet diaper, which was what the nurses had been monitoring, since output after surgery is usually slow and they were waiting for all of his body functions to return to normal.

All looks well at this point. Current plan is that he will still be here overnight. Mom and Dad are pretty worn out, but Grandparents are close to give them a break as we can and as Owen will allow it – he doesn’t want Mom or Dad to stray too far.



7am
We were able to move to the regular patient floor last night around 7pm. Owen was feeling pretty good and ate some graham crackers and watched "Elmo's Greatest Hits" which the nurses were kind enough to track down. We stayed the night in his room with him and the nurses came in about every two hours to check on him. Craig and I didn't get much sleep but Owen did great and only really woke up when pestered and once or twice to be held by mom or dad. He is still recovering very well and we're hoping he'll eat some scrambled eggs and toast this morning since he's now allowed to have something other than crackers. He is still hooked up to the monitor which is checking his heart rate, oxygen level and respiratory rate so no walking just yet but hopefully later on today. Something to note, when we checked Owen in yesterday morning, his heart rate was 54 bpm. Now that he's paced, his heart rate is 90 bpm. The doctors actually set his pacemaker at 90 bpm so that his heart can get used to beating almost twice as fast before they take off the set rate and let his heart beat normally for the first time. Once they do this, his heart rate will likely be somewhere in the 100bpm range.

2:27pm - Owen is waking up and we've been able to visit him since about 10:30. He's just now starting to ask for food and to "walk". We're not too sure when he'll be able to do either but hopefully it's soon since he's getting anxious. Recovery is going very well and we are hopeful that he will get to leave the PICU soon and move into a regular room. The PICU has been fantastic but moving means we'll get a room that we can sleep in with him and that his recovery has passed the need for intensive care.

9:47 - Everything went fine, the pacer is placed and he'll be in recovery soon. We'll be able to see him in about an hour.

8:48am - Owen went to surgery around 7:30. He is doing just fine and they are just about to start placing the pace maker. We expect that they'll be finished in another 90 minutes or so. We'll update when he is in recovery.
We're pretty sure we'll be headed to the PICU for maybe one night and then another on the general floor.
Thanks for all your thoughts and positive vibes.

Surgery at 7am 8/26

We had Owen's pre-op today. He did just fine. Everyone was amazed at how healthy he is and we're feeling really reassured about everything. He goes into surgery tomorrow morning at 7am. It should take 2 hours and then we can see him after he spends about an hour in recovery. We will post an update around noon so you can know that he is out and doing fine.

We appreciate all of your positive vibes and love for Owen.

Craig and Jenn

Owen's surgery

We finally have a date for Owen's surgery. It will be on August 26 which is also Craig's birthday. Sorry Craig! Owen will have a pre-op appointment on the 25th where we'll get to meet the surgeon and anesthesiologist. In the meantime we're trying not to dwell on it too much since it needs to happen and it will only help him. If the hospital has internet access, we will do our best to update you all on Owen's progress as we can.

Waiting is the hardest part...

It feels as if time has been going by kind of slowly for us lately. When Owen turned 1, we found out at his well-baby check up that he had a slow resting heart rate. "Probably nothing to worry about" our pediatrician said but then made an appointment for us with a cardiologist anyway. Long story short (and 6 months later) we're still waiting to find out what this means for Owen. At this point we know he has a partial atrioventricular block. The "block" referring to the electrical system in his heart and not blood flow. To correct this, Owen will need a pacemaker. We are currently waiting for some blood tests to come back and once they do, Owen will likely go straight into surgery. Recovery is a week which includes two nights in the hospital. We're fully expecting everything to be fine...they perform surgeries like this weekly at Children's Mercy and Owen is so young that he probably won't even remember it. He will go through about a half-dozen of these surgeries throughout his life as he grows and his pacemaker needs to be replaced.

In the photo above, Owen is wearing a Holter monitor. Apparently 16-month olds love wires so this was particularly fun to try to keep on him for 24 hours.

Owen's first trip to the zoo

Today we took Owen to the Kansas City Zoo. It was his very first trip there and, as a 16 month old, I think he was probably more interested in the other kids than anything else. Grandma and grandpa Lanio were able join us and we all had a great time. We decided to become "Friends of the Zoo Members" so hopefully we will have many more visits with our animal friends this summer.