Ahh...The Sweet Smell of Home

We finally arrived home today. I have all the girls asleep so I will have to make this a quick blog...a little time for me. Basically, her surgery went well and her site is healing nicely. She decided two days after surgery to go on a drinking strike...great timing, huh? People would ask what was wrong, is she having trouble swallowing? My answer: she's two! I'm just adding as much liquid (cereal, milk-soaked graham crackers) to her diet as I can get in and hoping for her to be happy she's home and start drinking again. The reason for the delay in getting home was taking care of that stinking blood clot. Small as it is, she still has to see a Hematologist, and get those shots I told you about (2x a day for 3 months). Well, just getting it to a functional level to go home on took several days. I got a bit pushy toward the end, but it got us home. So here we are. I'll add pics soon and try to update a bit more.

All Well

Ellie is in recovery right now. We hear she did well during surgery and they were able to close everything up. We're anxious to see her and to see how she does with eating and drinking today. I'll keep you posted.

# 9

Ellie just went into surgery about 15 minutes ago. They will be closing her j-site. First they will close the intestine(jejunum) and then they will close the abdominal wall. There should be no leaking after it is closed. They say it will look like a dimple. She is able to eat and drink after and we are all hoping she goes straight to it and has no aversions. I will update more later after her surgery.

Shots? Seriously?

Yes, sounds like I will begin my training tomorrow on how to give Ellie shots. I don't know all the specifics yet, just that I will be giving Ellie shots of Heparin after we go home. She is currently on Heparin to thin her blood and keep it from clotting (she has a small clot where the pic line got occluded and thinning her blood keeps the clot from getting bigger). She will also begin seeing a Hematologist about the clot...just what we needed....one more doctor. I was also told that she can never have a pic line on that left side again because of the clot.

The wound care nurse came today and we took off the bag and looked at her site. It looked great compared to before. I think we are definitely looking at Wednesday to close her site. If all goes well and she takes right back to eating and drinking, we should go home Thursday. That's the plan anyway, but not all plans go as they should. Keep your fingers crossed.

Today Ellie was happy and playful in her crib. She even pulled herself up to kneeling despite the big splint on her leg that holds her IV in place. It's so nice to see her happy and loving again. She has not been herself for almost 2 weeks. It has also been nice visiting with the nurses and care assistants that she had a year ago. A few still remember her well...especially the one with her tonight. That's all for now.

Happy Easter!

Wishing you all a Happy Easter! The girls were excited that the bunny did not forget about them and knew that they were visiting Ellie. The Ronald McDonald house provided an incredible brunch and Dave's sister invited the girls over for an egg hunt. So it was still a happy Easter. The only down side was having to say goodbye to Dave and the girls at the end of the day. It breaks my heart to see Reagan cry. When Maddie and I got back up to the room, Ellie was sitting up and playing with her new Easter bunnies and throwing her glasses off like usual. No new news today except that her arm looks much better and the new pic line is working well....incidently, we had a different nurse last night.

2 Henson

If you've been to Children's Mercy Hospital then you know that means Ellie has been admitted and is staying on 2 Henson. The last day of March, Elllie had her button taken out (NO Tubes!). It should have been great news, but we spent the following 9 days with her site leaking, irritating her sensitive skin, trying to stay hydrated, fighting occassional vomiting and trying to control pain. The last straw was Thursday morning. She spent the entire night awake and after only 2 ounces of milkshake, she threw up and it had a green tint with brown flecks. Green usually means bile and brown is dried blood. Her surgeon's office sent us to the ER at Children's. After 10 hours, 5 tries for an IV line, 2 different doctors, lots of explanations, lots of frustration,1 x-ray and 1 bag of fluid; Ellie was finally admitted. In a nutshell, she was severely dehydrated from the loss of fluid (no matter how much I gave her, we couldn't keep up) and extremely constipated (colon was full--pain med was constipating and not getting enough fluids to move it out). She has had lots of fluids to hydrate her now and is getting enemas to help her bowels. A wound nurse came in to find a new way to protect her skin from leakage and help it heal until the hole can be closed. There is a bag attached to it to collect fluid (there's still quite a bit coming from it). A pic line (catheter that administers fluids into the artery) was placed yesterday so she could receive nutritional fluids. Unfortunately, I walked in this morning to the arm that had the pic line being purple and swollen. NOONE had noticed and it was very obvious. Yes, I was livid! I got her nurse in and a charge nurse who said they'd never seen anything like it. A surgeon on rounds took a look and sent her for an ultrasound to see if it was a blood clot. The ultrasound showed that her catheter was the same size as her vein and was blocking the passage of a lot of her blood. Apparantly kids with Down Syndrome can have different sized veins than typically seen. They also said it could have been scar tissue from previous pic lines blocking it. There was a little clotting but they felt sure it wasn't cause for alarm. The pic was pulled and a new line (smallest catheter they have) placed in her other arm. As soon as they pulled the pic, her color started returning. It is still swollen but that it supposed to go down. Other than that, she is happy and playing now. They hope to close the hole middle of this coming week.