Wednesday, August 3, 2011


Aili is doing great! I think she had a great day. Clay had a doctors appt so he had to leave at lunch time. We brought him to his appt and stuff, so Aili stayed at the hospital by herself.  When we got back around dinner time, she was happily sitting/playing with a nurse. I guess she basically spent the whole day with them. Everyone loves her and thinks she's adorable!  They gave her a bath, washed her hair, dressed her up & gave her pig tails. She looked super cute! She did ask where Daddy was all day, but she did good & was happy.

Her wound is looking better. We didn't get to see it ourselves,  but they changed her dressing today and said it looked better than on Monday.  She has been on two iv antibiotics this whole time. One is zosyn & I don't know the name of the other. They changed the second one to something else, but I think that was part of their original plan.

Tuesday, August 2, 2011


Aili is doing great. Her infection is called pseudomonas. It will require her to be on IV antibiotics for 7 days. We started the antibiotics on Monday night, so we should hopefully be done and allowed to come home early next week. They will just have to keep an eye on her and see if these antibiotics are working and doing their job! So far they seem to be. She doesn't have any fever and her white blood cell count is normal. I think they may take her dressing off tomorrow and see how her wound is looking. Right now it is covered with ionic silver that helps keep it clean, because it's antimicrobial and also keeps the area moist (in a good way). Then it is covered in a breathable bandage.

She seems to be in pretty good spirits, but of course would like to come home! Clay has been staying with her and I have been at home with the kids. All the kids and I went up with Clay tonight and ate dinner with Aili. I made Stromboli for us, which was great. After we ate and hung out a little, the rest of us came home.

The sucky thing is Aili is at the age, where since Clay is in the room she won't really nap or sleep like/when she should. I know she didn't nap today and when I called right before 11 pm tonight, she was still awake. She normally takes a nap after lunch everyday and then goes to bed at 8 pm.

Anyways, she seems to be doing great for the most part.

Monday, August 1, 2011

Back in the hospital

Well we went to her second post op appt. The top of her incision is infected. It's infected with something that isn't usually in wounds, but usually found in like UTI's & respiratory infections. They can only do IV antibiotics, because the only pill approved is for patients over 18. We were told to expect to be here for the week.

Wednesday, July 27, 2011

The Fontan - My Amazing Girl!

Aili Rae had her Fontan on Monday the 18th. We had to show up at 6 am. She went into surgery around 8:30 and was done by about 11:30. She did amazing! She was extubated that night!! On the 20th we got moved out of the CICU and into the HKU (Heart Kidney Unit, the hospitals step down unit). Then we went home on the 22nd!!! I have to say that Aili is AMAZING! I've never heard of anyone going home from a Fontan that fast! She was only at the hospital 4.5 days and that 1/2 a day was us waiting for a pharmacy to deliver her meds. She is healing great! We have our first follow up appt on Friday.

Right out of surgery....

Feeling OK...resting & petting her new panda!

Out of the CICU!!

On our way home :)

Feel free to pass this around! I hope that it can give others hope for their little ones!