Update: Day 8

Still in the rough patch--no puking today but no poop either which = pain, even after treatments of Miralax (which she's been getting for 4 days now), a suppository and Biscycodal again, and another pill this evening called Lactulos which is supposed to work like magic. So far, nothing. She hasn't had any energy today and has refused to walk. We forced her this afternoon and walked down to the bath tub for a bath. Boy did she need that. Unfortunately, still can't get the rats nest out of her hair. I accidentally pulled out her IV so she really needs to drink and eat to keep hydrated now. After all of the push for one, go figure, I mess up and pull it out.

The best part of today was getting her 2 remaining chest tubes out. They haven't drained for a couple of days now so they were pulled. We have also made the wean from the oxygen, she's satting in the low-mid 80's on room air. We're hoping that once she's healed up, her collaterals quit forming and "die off" with her new blood flow, she'll sat closer to 90%. We may not see this though for a few months. Since she has a fenestrated Fontan, she still has some mixing of blue/red blood as it creates a "pop off" for her heart, relieving pressure and allowing her heart not to work as hard when it's stressed (like if she's sick, with exercise, crying hard, etc.) There is an alternate route blood flow can take to the lungs but this blood isn't oxygenated so it mixes with the oxygen rich blood from the lungs.

So she has no wires, cords or tubes hanging from her anymore! If she felt better, I think she'd care. We were much happier than she was about it all. The plan is to get her eating and drinking again but we don't think this will happen until she goes. I looked at her stomach x-ray and it's built up way up into her belly, just under her diaphragm. She's only on Tylenol now (Oxycodone will just make the constipation worse) so the pain from this has to be unbearable. Plus she only had open heart surgery 1 week ago. Cruel.

She had two chest x-rays today and we haven't heard anything so must be ok. Now just waiting for tomorrow, the talk is discharge in the next day or two depending on her bathroom issue and pain control, as well as how all of her tests/exams go. She's so done with this...when asked if she's in pain, she always says no, just so they don't bug her. The chest tube removal was a bit dramatic, even with getting some IV Versed. She was so silly right before the procedure so we had a few minutes of our happy girl. Thank goodness we have our same day/night nurses, the consistency of care has really helped in her recovery and keeping our sanity. I have so much respect for these nurses...12 hours shifts and complete care for the children and their families. They never sit down or get a break. What a wonderful, demanding profession and we've been so lucky to have the most talented ones here.

I don't know how people do hospital life for months at at time. Our neighbor has been here 9 months with their heart baby. Even with difficult times, we are so fortunate to have had a fairly smooth recovery with all of Maddie's surgeries. Please keep our girl in your prayers, this isn't getting any easier for her and she just needs some relief and comfort from it all. HOME is the only remedy for this.

Aunt Lesa & Grandma Allred went back home today...and daddy drove back over late last night

this is how she's been all day

Jessica, our sweet, caring night nurse