Tuesday, March 24, 2009

more questions than answers

There are no more real answers to what happened yesterday. They did a second chest x-ray this morning and it still showed some kind of shadow or blur in this left lung. They have decided to treat it as pneumonia although they are all still scratching their heads a bit. The question is, was there some kind of infection in his lung that could have brought on this episode, or as a result of the events leading up to this episode did he aspirate something into his lung therefore causing the infection? They seem to be leading more towards the aspiration theory, but have no concrete evidence either way at this point. 

As a result, Charlie is on two antibiotics right now and is still on the vent. They are having to keep him sedated because he is very aggravated by the tubes. He starts gagging and retching and then desats. Overall, he seems more comfortable than he was yesterday, but it is still awfully hard to see him like that. We now know the real baby in there and he is just not himself. When he does open his eyes and look around he looks so scared. But hopefully they will feel comfortable taking him off the vent soon - - maybe even tomorrow. 

Feedings have of course taken a back seat to this since it started, so we will be back to square one again. We are not sure what the plan of action might be. Dr. Ratner (surgeon) mentioned a few possibilities when he talked to us yesterday including a g-tube or tightening the valve between the stomach and esophagus to keep him from refluxing. We will have to wait and see and hope for the best. We will let you know when we know more!

If there is anyone out there who has experience with episodes such as this - going from completely fine and satting 99-100 with room air to stopping breathing all together with a dip in heart rate for no obviously apparent reason other than being upset (ie: by bath/new feeding tube) - please give us some insight. The doctors don't seem to quite know what to make of it and how to prevent it from happening again. Some answers would make us feel better!


Renaté said...

I do, but I don't know if it applies. My daughter suffered from multiple seizures as a baby. They were the brains response to the onset of fever, even slight, and she would be fine - happy, playing... then her eyes would roll up and she would start shaking. She didn't always shake though, sometimes ahe would stare off into space ans just stop breathing - those were the petite mals. The others were called Fibrile seizures, meaning they are associated with a fever. For children as sick as Charlie it's not uncommon to have one or two, but if it keeps happening consult with a neurologist if that turns out to be the problem.

Fer said...

Oh dear Patty! I know how you are feeling, I am here for you anytime!

Juan Pablo did several apnea episodes. He was just fine breathing room air and all of the sudden he turned blue and stopped breathing. That's when they decided to move him into NICU, but remember that he was diagnosed with CDH until he wa 3 months old, this happened as a newborn.

I am praying for Charlie and keeping you in my thoughts.

Dee said...

Prayers and love are sent your way...hoping
God is holding Charlie in his hands....

Craig and Kristi Kuehl said...

Hang in there Patty. I can only IMAGINE how frustrating it is, but Charlie WILL overcome this and be back on track to getting home. We continue to keep Charlie in our prayers, and he is still such an inspiration to the CDH family--you guys should be very proud.

Much love, prayers, and a "hang-in-there-HUG!"