Monday, February 16, 2009

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!

Friday, February 13, 2009

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!

Thursday, February 12, 2009

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!

Wednesday, February 11, 2009

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 :)

Tuesday, February 10, 2009

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. :)

Monday, February 09, 2009

Day One

It's been a long day. Not going to bed til 2ish, getting up at 4:45, a little catnap around 10... I am ready to drop. I am sitting on a bed at the Best Western next to Children's, hoping to get more sleep that if I was laying on the little bench behind Brady's twelve beeping machines. Completely zonked until tomorrow, the little boy doesn't even realize that I am gone, which is of course the only reason why I am here, and not there.

The day started pretty well - not too much traffic driving in, then Brady crashed pretty quickly on the sedative they gave him. By 7:45ish he was whisked off to be prepped. By 9:25 they had made their first incision. Not too long later he was on the bypass machine, then at 10:50 the surgeon was walking out to meet us. Things had gone very smoothly to repair Brady's supravalvular aortic stenosis. They also removed a flap that was over the coronary artery, which, apparently, is common with WS kids. And since they were hanging out around the heart anyway, they repaired his little VSD.

He's been pretty much plowed since then; in fact they decided a short time ago to wait to excabate him until tomorrow so he can continue to be sedated. The docs like their patients to be awake to be excabated, but then they would have sedated him again to rest and they didn't want to put him through that back and forth. Brady tends NOT just lay down and chill out, so I think it is a good plan.

So here I sit, with a borrowed laptop (Thanks, Lisa K!!) and a help figuring it out how to work it (Thanks Lisa R.!). I will be able to keep up with everyone over the next week while we are here. Thanks especially to Nanci for all the advice- I am using it all!! And once again, thanks to everyone for their prayers, gifts, Michael-sitting, and dinners... I know the BEST people!

Sunday, February 08, 2009

Big Day Tomorrow

Tomorrow is the big day - open heart surgery for Brady. We need to get to Children's by 6:30 a.m. and they will start the sedative and be ready by 7:30... wow!

Pre-op went well. He still has a runny nose, but no fever. His white blood cell count was high, but they said it was probably because he had been fighting the virus. As long as he doesn't have a fever, we are good to go.

I have had so many good wishes and prayers, gifts and food come my way -- THANK YOU ALL!! It is a relief to to worry about anything at home, it is all taken care of. Brady is on about five church prayer lists, plus Tom's father's cousin's nunnery - can't beat them! They've got the closest conversations to The Big Man!

I will have a laptop (again, another generous friend) so I will update while I am hospital bound. I will also be on Facebook too.

Thanks again to ALL of you!! Talk soon~~

Wednesday, February 04, 2009

Random Thoughts

The countdown is on - less than a week now until Brady's surgery next Monday. Funny, time doesn't stop for you to catch up and get everything done when there is something big on the horizon. Luckily, I have had numerous friends and family offer their help in terms of watching Michael, the dog and feeding Tom, and I appreciate them ALL ... I'm taking people up on them as well! Heck, I'm even asking people who didn't offer just because it made sense depending on timing and the fact that Michael wants to play with their child. :) Shy? Nope, not me!

Brady got a runny nose this past week, so I kept him out of school earlier than I planned, but I was able to bring him in so he could pass out his Valentines on Tuesday. He had gone to his FIRST non-relative/non-Mom's friend birthday party from a girl in his class a few weeks ago. He had gone barreling in to the play area with his walker and the kids were all, "Brady! Brady! Brady!" Once they entered the bouncy-filled room, they quickly sped off, but for the first 15 minutes he was the center of attention. :) It was fabulous!

I was lucky enough to see Teresa, pre-Violet's entrance into the world, and meet another WS mom, Tammy. Her son is the same age as Brady and their issues are very similar, so it was great to compare notes and get some advice. I am so glad I got to spend time with them, especially since I missed the January meeting of the WS moms at Laura's (due to trying to get everything done and poor timing) and sickness has kept away Coleman's and Lucien's families.

I am getting a lot of helpful advice from other WS moms whose children have gone through heart operations, and it has been such a blessing. I've been asked if I am nervous, but I honestly haven't had time to think about being nervous. I plan on staying with Brady at the hospital, which means an 8-10 day stay, so trying to get everything organized and done before I take off is all I have been doing. I am borrowing a laptop so I can keep the updates going and continue my ever-growing obsession on Facebook. :)

Amidst all this, we have also had some hard times. My Aunt Sadie passed away on February 1, and it's so hard to think she is no longer with us. She is in our prayers, and I know she is looking out for Brady as well.

I am confident this surgery will do wonders for my little man... I think he will really take off once he has the energy. He already has the drive, it is obvious just keeping him home these past few days. With no fever, no aches, just a runny nose, he was definitely going full speed. How is he going to top this?? I can't wait to see!