Manic Monday

Sleeping on my lap instead of eating..he was exhausted!


Liam had a rough night last night..he wouldn't go to sleep until about 5:30am and was just not eating a thing. He has been gagging, throwing up, etc for the last 16 hours. The doctor seems to think that maybe with the fluid he already has in his lungs, he just can't take more down. We are hoping he will go back to the eating champ he is soon, but until then, eat enough to stay hydrated and not lose too much weight. I think we are going to use some medication for reflux now and it will help in the meantime. If he can't, the feeding tube might come into play and I just don't want to do that. It would be like when he was born again and he hated it then.

Despite this set back, his xrays look a ton better and it looks like we will be here a few more days. He is on IV diuretics which are very strong and will be weaned over to oral diuretics so we can give them to him when we are discharged. Once the fluid is out, the doctor feels everything else will come together and we won't be far from home. She doesn't want to send us home until the lungs are clear, and frankly, I'm not leaving until then either.

They also did an echo-cardiogram this morning and the surgeon had mentioned originally a small leak around the patch on his pulmonary valve- very typical in this type of open heart surgery. They saw it again today and while they think it will be tolerable and heal itself, if it doesn't, we may need to do a procedure in 2 months. Its catheter, through the leg, and it basically sends a balloon up to the valve to help open it more. Its a small chance, so we are hoping it will not be needed. If it is, we will head back to CHOP for the procedure because it means another 1-2 days in the hospital.

Lastly, because of all the diuretics and trying to take the fluid out, his electrolytes are really low. I offered Gatorade but apparently, that won't do the trick. They gave him some fluids for the low electrolytes and hopefully, tomorrow, they will come back up. He is definitely drained today, very sleep and hard to wake up.

Thankfully it will be a few more days of this and then we will see the finish line. Taking him home and getting settled in sounds like an amazing dream, I can't wait to see him healthy again.