Brady's Walk 2009!

Sunday, April 26... same place, DW Fields Park, Brockton. Time will probably be 1 pm - I just need to coordinate with my partner in crime! More details to follow~

Back in the saddle again

It's been a whirlwind since coming home from the hospital. Brady has taken off like a rocket and I am amazed at how different he is.

When we came home from the hospital that Tuesday night he was off crawling around, cruising... I had to call the nurse's station to make sure it was okay. They said whatever he was doing himself was fine, he wouldn't push himself to get hurt -- but I was amazed at this kid and his obvious forgetfulness over having open heart surgery just a week earlier. And he didn't slow down. His energy level was one thing --quickly crawling around, cruising more, jumping in bed every morning when I walked in to get him up-- but the other was his intent. Now you can see he has his eye on something and is going for it. Two minutes out of my eyesight the other day got him three-quarters up the basement stairs. Not moving the dog food bowl quick enough gets the food spread out all over the kitchen floor. Little, typical things that every two-year-old does that Brady is finally doing at three.

Being feisty has been a real interesting aspect as well. His squirming and quickness made it especially hard to pick him up, especially since I couldn't pick him up under his arms until two days ago. We started back at school last week, where they noticed an instant improvement. They were happy to report how opinionated he has become - a sure sign of development. Of course, that excitement will probably begin to wane and we'll have to start some behavior modification, I am sure!

Health-wise, Brady only lost a few ounces, which was amazing. His eating has improved. His recovery with his incision was remarkably quick. He has a different look on his face, he smiles more easily and readily. It actually frustrates me in one aspect, because I am wondering how he felt before the surgery -- he has a more relaxed look about him now. I have never been so aggravated over his non-ability to converse with me. What I wouldn't give for just a simple, "I feel great, mom!"

(You'll note in these pictures Brady is actually doing SOMETHING... very little laying around now... he's outta here!!)

Almost Over

It's Sunday night and we're on the countdown for home. It looks like it'll be tomorrow or Tuesday, depending on when Brady will start drinking more on his own. He has had fluids the past few nights because he is drinking minimally, although he started eating better today. I really don't want to go home until I know he is not going to dehydrate.

Even as I type this, Brady is rolling over on his stomach, pulling into sitting position. He will probably pull himself up and stand against the crib rail. He did this a few times today and scared the daylights out of me. He looks great though!

I am a little nervous about going home -- how do you keep a three year old in one place?? I have been told that whatever he does on his own is fine, although he's not supposed to crawl. Yeah, right! This is going to be an interesting six weeks. Plus I can't pick him up under his arms - which is basically how I always pick him up. He's gone and gained all this weight, and now I have to pick him up like a baby, under his head and bum. Not TOO hard! Of course how can I complain... almost done!

Day Five

Today was a little more exciting. Brady has had a couple days of chest PT, where they banged on his back to loosen up the junk in his chest. It's done wonders and he sounds clearer each day. He had a temp - only around 100 degrees - that they think came from all the mucus, since his white cell count they had done in the labs this morning came back fine. But for a few hours we were watching his temp and making sure it didn't go up.

Eating wise he started off great - ate a whole yogurt mid morning - but never dove into the apple juice that was offered. Finally, during the evening I used my brain and warmed milk for him. So far he has taken 10 ounces. I think tomorrow will be a better day. We're also going to take him for a ride around the floor - -woo hoo! Tom will bring Michael up after the Pinewood Derby, which is great since I haven't seen him since early Monday morning. Can't wait!

Day Four

Cardiologist: Well, after his echo and we see how well he eats, he can go home tomorrow.


Me: WHAT?!?!?!?

Cardiologist: (smiling) Well, only if you're comfortable.

Me: Yeah - ummm... we're not going anywhere.

Yeah - we have open heart surgery on a child with Williams Syndrome and a dehydration issue and you suggest you go home without eating or drinking successfully for a few days? You better smile, doc!

To be fair, the cardiologist suggested this before he realized he wasn't eating or drinking. Once he realized that, his tune changed. Brady in general is doing better, he just needs to get off the fluids and start eating and drinking more. They put him on fluids at night to keep him hydrated, but we try to encourage drinking by mouth during the day.

He had his echo which showed that "you could drive a truck through his aorta, not that you'd want to do that," his doctor comically told us. When the tech did the echo she had to use a red iodine to prevent an infection -- it looked like a bloody mess, which I accurately scared my mother with when she came back in the room. Hey, when you're in the hospital for five days you need a little comical relief. :)

But what the echo showed was fabulous: the SVAS is completely gone -- how strange is that?? The pulmonary stenosis is still there, very mild and slowly lessening, but will be followed by echo, of course. It also showed that there is a little aortic leaking -- which I don't understand but apparently is common and not a big deal. Really?? It seems a little freaky to me, but I'll go with it.

We had a lot of visitors today; Kathleen and Cooper came over, along with Grandma, Josh, Pa, Doris and Amy. Teresa and baby Violet came which was extra special so I could meet the newest little one. She's so tiny -- Teresa kept reminding me "She's only three weeks, Kerry!" but she made Brady look so big - not an easy feat!

Day Three

It's hard to believe that only two days ago Brady had open heart surgery. He's not jumping around or eating much, but today they took out his lead wires to his heart and took him off oxygen, as well as started to give him his pain meds orally instead of through an IV. They were set to take off his IV, but since he only drank a couple of ounces and ate half a pudding, they decided to give him fluids to keep him hydrated.

Brady is still mostly sleeping, getting a bit agitated right at the time when he is due for pain meds, so he is far from 100 percent, but slowly and surely he is making amends. The bandage covering his stitches came off today, which is a bit scary to see. There is a small bandage covering his bottom stitches they needed to reopen yesterday, and I'm already starting to hear the rules that will follow us home - no lotions or powders on the stitch site for months, no picking him up from under his arms for weeks and weeks... I think this will be an interesting set of rules we will be bringing home.

Tonight Nance and Stef came by with buffalo wings- yum! It was a fabulous treat during these long days. Grandma came again today with yet another present for the patient, of course :)

Day Two

Mr. Brady is sleeping. We are in our room on the cardiac wing, sharing with a one-month-old little girl who will have heart surgery on Thursday.

Today has been a long one. It started off good - they took out the breathing and feeding tubes around 4 a.m., with little crying from Brady, and then he went right back to sleep. His morning was uneventful, mostly sleeping. Late morning they attempted to take out the chest tube - usually the nurse can just pull it out and tie off the small stitch. His did not pull out. The attending surgical consult could not take it out either, so they contacted Brady's surgeon and he came up to check on him.

After deliberating, they decided they needed to undo his bottom three stitches and take out the chest tube that way. This would mean intubating Brady again and giving him sedatives. The whole procedure took little time with great success. Since he was sedated, they planned on keeping him intubated for a few hours, then, as he woke up they would excabate him.

Well- Brady apparently didn't hear that plan! Something common with three-year-olds is manipulating the tube with their mouth and tongue. This is what Brady did, thus knocking his tube out of the trachea. They had to excabate him and manually gave him oxygen while they determined if he was able to breathe on his own or if they needed to intubate him for the third time in the day. After watching him for about 10 minutes, they could see he was breathing on his own so they didn't need to do it again. Phew!

After a nap-filled afternoon, Brady moved into his room at 7 p.m. He has had about three ounces of apple juice and still sleeping. In the morning they will take him off the oxygen. Grandma was here all day (thank you!!) and Grandpa came too, which was great. I'm wondering how much energy this little rugrat is storing up that we will see tomorrow. :)