Going Home!

William was able to go home today.  He is recovering with amazing speed.  The most difficult part lies ahead of us, however, as we try to contain his energy for the next 8 weeks while his sternum heals.  He seems to understand the need to be careful…easy now as the memory of surgery is fresh in his mind.  A month from now he may not be so compliant.

Many thanks to everyone for thoughts and prayers through this process.  We have been blessed with great family and friends and, a wonderful surgical team and a phenomenal staff of nurses at Hope Children’s Hospital.

Surgery – Day 2

12:15 am – William finally got his much anticipated (small) drink of water.  It did not end well.  After a sponge bath and clean sheets, he is back to sleep.

11:10 am -William has been weaned off of his IV pain medicine and is on just Tylenol for now.  We’ll see how well this works…  He’s been up since 5:30 with a few cat naps here and there.  He finally seems to have fallen into a deeper sleep.

Mike came back from sleeping at the Ronald McDonald house around 5am and then I went to rest.  After I woke up, I sent him an email asking how William was doing.  His response was this:

William with a popsicle is a good thing! He also had some water and orange juice and was able to keep it down.  The doctor thinks he might be ready for solid foods by dinner time.

3:00 pm – Chicken nuggets for lunch!  William was in heaven with solid food and ketchup.  He had a visitor a short time ago who brought him lots of goodies, including a note from two of his new dog-friends (and lunch for Mike and I, too!).  He also received a beautiful cookie bouquet delivery from some great friends and the best kid-sitter in the world!  These have all helped to raise his spirits.  We are thankful for the support of all of our family and friends.

We checked in with the other kids today and they’re all doing well.  I think with Grandma there, they really aren’t too concerned about us coming back home.  Aiden made a list of all the things he wants to do with Grandma and I think they’re well on their way to completing it.  They’ve gone out to eat at two of their favorite places, saw a movie and played in the park.  I think an ice cream trip must be somewhere on the list…I’m sure they’ll do that too, at least once or twice, before Grandma has to go back home.

It’s Surgery Day

William is having open heart surgery today to correct a hole in his heart. He was diagnosed with primium atrial septal defect at his kindergarten physical last fall. We’ve been traversing the medical process since then…waiting for summer to do the surgery so it didn’t interrupt school.

He seems to understand the problem and the process. He’s been a trooper through all of the doctor appointments but decidedly does not like having his blood drawn. I thought there we were going to need restraints this morning for his final blood draw

William was given a “loopy” drug before he left the pre-op area and was feeling really well when they wheeled him back into surgery. We got an update from the nurse just a few minutes ago…around 8:20 am. Apparently he was flirting with the nurses before he was sedated.

According to the nurse, he was sedated easily and they have inserted 4 IVs. They will be doing another echo-cardiogram (his 4th one so far!) and then will begin the surgery.

Waiting (not so) patiently for the next update…

9:10 am – William is officially in surgery.

9:40 am – Surgery is going well.  They found and repaired a notch in his mitral valve and will be patching the hole next.

10:50 am – The bulk of the surgery is finished.  William is being weaned of the heart-lung bypass machine and his heart is starting to pump again.  There is a slight arrhythmia, which is not completely unexpected. They’ve inserted a temporary pace maker that they may use if his heart doesn’t resume rhythm on its own.  It will be easily removed before he comes home. He’ll be in surgery for another hour or so and we’ll get to see him in the PICU in about 2 hours.

11:30 am – The surgery is done!  William is doing very well.  He is on a low dose of a med to regulate his heartbeat and hasn’t had to use the pacemaker.  They are taking the breathing tube out and preparing to move him to ICU.  Mike and I have been moved to the pediatric family waiting room.  We will see them wheel him out of the OR and then it will be about 30 minutes until we’re able to go into the room with him.

12:00 pm – William was just wheeled past the PICU family waiting room to his room.  We’ll see him in about 30 minutes.

2:30 pm – William is in his room finally resting comfortably.  His main complaint is that he’s thirsty and needs a drink.  He is not shy is demanding this from everyone who comes in to check on him.  Unfortunately, he can’t have anything by mouth until about 6 hours after surgery.  Thankfully, he is sleeping soundly now.  He was getting a little…ok, a lot agitated a bit ago and they adjusted his pain meds.  It must have done the trick as he’s been sleeping ever since.

9:50 pm – The afternoon and evening have gone well.  William has been in a lot of pain but they’re doing their best to control it.  Oddly, the pain is not so much from his chest incision but more from his stomach and catheter.  He has slept on an off all day and has been groggy even when he’s awake.  The grogginess, however, does not affect his incessant pleas for a drink…from a cup…of water…a big cup…not that sponge thing!!  So far, we have only been able to use a sponge sucker (little sponge on the end of a stick…looks just like a sucker but apparently not as fulfilling to the patient) to wet the inside of his mouth.  William has figured out that if he clamps his teeth down he can suck the water out of the sponge.  This does not make his nurses happy.

We were given a room at the Ronald McDonald House for the duration of our stay.  Mike has been by William’s bedside the entire day.  He took a break from 7:00-7:45 to eat, but only because the nurses’ shift change kicked us out of the room.  I finally convinced him to go to our room and sleep for a few hours.  Back to the Ronald McDonald House…what a fantastic thing!  It is such a comfort to know that there is food, drink, and a comfortable Sleep Number bed less than a block away whenever we need it.  It will be my charity of choice from this point forward.