8/3/11

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.

8/2/11

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.

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.

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!

A year ago today

A year ago today you had your first open heart surgery. I remember waiting the 13 days from your birth to today, wondering every day when your surgery would happen. It seemed everyday someone else was sicker and needed to come first, which was good that you weren't as bad off yet the anticipation still built. Then the day finally came. You were in the OR for 12 hours. 12 HOURS!!! 12 hours of wondering, waiting, questioning. Finally you were out and we could see you. You came out on ECMO though, a hear-lung machine. Last year we sat at the hospital waiting, this year we spent the day together running errands. A year makes such a difference. You are doing so well and doing so much!

A year ago....

Now...

Happy First Birthday Aili!!

Aili is ONE!! YAY! We have made it through an amazing year : ) Here are a few pictures of her birthday....

Swallow study & Feeding therapy

We had a swallow study a while back and it went OK. She still needs to be on 'nectar' thick liquids. They said she still has a very high possibility of aspirating and we have to watch her very carefully. When they did the nectar thick barium, she didn't aspirate, but there was liquid left there, that she could aspirate. (sorry that probably makes NO sense....haha!). They then tried 'honey' thickness barium, which she aspirated really badly. She turned red, her eyes watered and she choked/coughed. They did have to use a different nipple with the honey thick, so that may have been part of the problem. So for now we stick with the nectar thick and watch her carefully. Her feeding is still pretty slow going, but she is starting to eat more solids and the therapist said I am doing everything just like I should. So we will just keep at it. At least she doesn't still have a NG tube!! We got her weighed the other day at WIC and she weighed 16.5 lbs. She's still such a mini compared to everyone her age, but she is still growing at her own rate. I think she was like 26 or 27 inches...I always forget that part! We will keep her on formula (at 27 cal. per ounce) after a year and continue on working on solid food. Here is a picture of the cutie.....