Wisdom Heart

Sophia was discharged from the hospital this morning at around 10am.
It is good to be home.
So here is the scoop:
Pneumonia was ruled out completely. They decided Sophia just had a viral form of Bronchialitis that would run its course. No antibiotics necessary.
That of course still leaves the mysterious cloudiness in the x-ray.
Here is the current consensus. Sophia has a pseudoaneurysm (also known as a false aneurysm, is an outpouching of a blood vessel, only involving the innermost layer tunica intima and not the other two layers) likely on the arterial conduit she received with her last surgery.
So the next step is the Cath Lab and possibly more surgery.
They also started Sophia on Digoxin as her heart is not functioning very well. She got a 3 or 4 loading doses and is now on a maintenance dose. All are given as oral medications.
Since the loading dose Sophia's heart rate dropped a little and her extremities are warmer. I hope this means it is working.
We will see the cardiologist for an Echo in the next few weeks.
But for now our focus will be on her getting over the bronchialitis.
I am trying to look at this as part of the whole process to get Sophia well.
But it really feels like a major set back.
-Michael

Thanks to Jamie from CHD Families KC for posting this in the yahoo group.
This is a link about what it it is like to have a child with a CHD. You can order posters and books about CHD kids and Parents at the website.

We are still in the hospital. Sophia has started Digoxin. We will hopefully be home soon.
-Michael

Hi everyone,
We had to take Sophia in to the emergency room Sunday with a cough that was causing her to de-sat considerably. We suspect she picked up a bug at a pre-op appointment to get ear tubes on Monday. She got her tubes on Tuesday. And Wednesday, she started coughing and getting pretty snotty. We took her to the pediatrician that day and he prescribed some amoxicillin to keep it from progressing in to an infection. By Saturday, we were convinced we would have to go back in on Monday. But by Sunday night, we were in the ER.

They did a chest x-ray in the ER on Sunday. But, they haven't made a determination yet. She has "something" on the left side of the x-ray. They aren't sure if her heart is enlarged, it is scar tissue from her last surgery or she has pnuemonia. Her cardiologist hasn't been able to get up to see her as he has been dealing with a newborn at another hospital that is apparently being transferred to Children's Mercy today.
The hospital is doing an echo right now and her cardiologist will be up to look at the X-ray and Echo this afternoon.
I will post as soon as I know what is happening next.
Bye For Now-Michael

Every single time we set foot in the hospital, Sophia gets sick.
We went in for her pre-op appointment on Monday. Tuesday morning she had a little bit of a cough and spit up a bit. We didn't think much of it as Sophia has pretty substantial reflux and getting her out of bed at 5:30am would definitely be enough to trigger it.
So she went in had her tubes put in everything went fine.
We got home and she still had a little bit of a cough. Maybe because of the gas, that anesthesia administered, we thought.
By that evening it seemed more evident she was coming down with something, but as she had just had surgery, it was still to early to judge. By morning he was miserable (see pic with Grandma above).
She was coughing, vomiting and not able to keep anything down. We made an appointment that afternoon with the pediatrician.
He said, there was a possibility she had picked up an intestinal bug that he had been seeing a lot of this week. But though it was more likely her cough was triggering her vomiting. He suggested, we keep her well hydrated and put saline drops in her nose to loosen up any mucus that could be building in there. Sophia's heart condition makes treatment with decongestants impossible. He prescribed a round of amoxicillin for what was quickly becoming an upper resiratory infection and sent us on our way.
Since that time we have managed to get Sophia very well hydrated, which was a challenge due to her vomiting. Last night, we managed to get a whole liter of pedialite in her. But, none of us managed to sleep other than in about 10 minute stretches.
This morning we are trying kindercal again.
Fingers crossed-Michael

We had to be at same day surgery at 6:15 this morning. After vitals and other assessments, Sophia was in surgery by 7:30.
They put tubes in both of her ears and did a hearing test in the operating room.
By 10am, we were home.
Sophia is pretty tired and very grumpy as would be expected given the day she has had.
The audiologist said her hearing was perfect in one ear and borderline perfect in the other. This was great news, as Sophia had exhibited about 30% hearing loss prior to surgery due to fluid on her ears. It would have been pretty devastating if the fluid was removed and the hearing loss was not. Anyway, she is getting lots of love and lots of naps and will hopefully be back to her cheery self in no time.
-Michael

Sophia had her first bubble bath and I wanted to share a photo.
We are getting tubes in her ears tomorrow. I will post on the outcome.
-Michael

Just a quick link...
Tiny Babies Receive Domino Heart Transplant.

Amazing. I hope they both have a speedy and complete recovery.