My Brave Babies

Well I sweet talked my mom to go down to the van and get the camera. Here are the great patients....My brave babies!!

Sorry I didn't remove the red eye but look at the whites of her eyes....the are WHITE not yellow any more. Look at her coloring she no longer has that yellow cast to her skin. I am just amazed! Avrianna got out of bed this afternoon by herself and went potty all by herself. She ate most of her lunch (chicken noodle soup, jello, and mandarin oranges) and supper (cheese pizza, fruit roll up and a vanilla shake) so as afterwards we went downstairs to visit her brother.

She is showing off that she had two IV's one in each hand. She said she liked surgery now as she didn't feel anything....but not too much afterwards, LOL.


Here are the six incisions that did to remove the spleen and gall bladder (which by the way we have pictures of before they removed them, so Avrianna is excited to show Dr Kasper them) Each incision is about the diameter of a pencil so the tape just makes them look bigger. (the mark in her inner arm is a tattoo she just had to have before surgery, LOL)

Here she is sitting on MY bed in Danny's room, doesn't it look comfy, heehee, NOT. She got to spring out of her room for about an hour and chill out in his. Notice she is off all IV fluids right now, YAY! I am so impressed on how well she has done today. We've gone from her not even sitting up by herself to getting up, walking around, and eating in just ONE DAY.

She is really upset that she has to take her medicine orally and tends to pitch of fit...boy this is going to be fun. As she is going to have to take penicillin 2 times a day now for many many years to come. I hope this will pass and it won't be such a challenge but as you all know .... Challenge me!!

And on to lil man....ok he doesn't look so lil now, does he?? He still have a few more tricks up his sleeve....this afternoon I went to give him a suppository and when I opened his diaper up "the boys looked like tangerines size and were purple n blue. Again I totally freaked out! They looked like they were going to explode. At the same time I noticed that there was no urine (or should I say blood) out put so the RN tried to flush out the line but within 20 minutes it totally clogged with a blood clot again so Danny is now on his 3rd foley catheter. Paul (Danny's day RN) gave him the suppository too so within 5-10minutes things were flowing out of both ends once again....THANKS AGAIN PAUL!! I don't know if I would have kept my sanity as well if you weren't there for us as a sounding board, advocate, and GREAT care giver to my son. Danny's "boys" are still big and blue (LOL) but they say it is common for that with this kind of procedure....just wish mom knew that may happen instead of me stumbling over it, ugh! It's he so handsome!! The flower pillow lights up so it's a great light show for him when the lights are down.

Here is his brace. Thanks Kacz for making it "just right" for Danny. I am going to ask Kacz to move the belly braces apart more as it is rubbing right on his G-tube. But other then that it seems to be working really well. It is definitely big and cumbersome but it's better then a cast. His surgery was done on just his right hip but they need to brace in both hips to keep the right one in. The bracing on the left side doesn't go all the way down as far as the right on does. I got another set of pads (purple n gray inserts) so if they get messy I can replace and then wash them. YAY!

Here is a closer view. I know the diaper job doesn't look that great but we are working on our technique, heehee. He has pads that rest right up to his groin so this is really becoming a challenge too, LOL. I can open the brace to see if there is any skin break down and it can only be removed if the pads need to be changed....other then that is STAYS on him for 6 WEEKS (better then 12 weeks and a cast!) I thought if I bought really large pants they would fit him, but they have a non removable bar that goes in between his legs so no pants unless any of you have some ideas for me :) So I am REALLY NOT going any where once we are home as he can't wear any pants. I am thinking of getting a small sleeping bag or something so when I have to go out for doctor appts I can slip his bottom half into that, we'll see what I can find. No PIC line was put in today as they couldn't find a Radiologist that would come in to do it....I know TOTAL crap, but I will drag my feet on this one cuz it just another source of infection once in. His labs have stabilized so that is one good thing, but next hour could be different. He is going to see Dr Scott tomorrow (that happens to be Avrianna's Hemo doc too) so we will see what he requests we do.

I believe Avrianna is doing so well she is going to be release tomorrow, but Danny I don't think we are going to be that lucky. I will cross that bridge when we get there with what we will do about one in and one out .... too much to think about right now then to stress out about that. Well that's about it for now. Hope you liked seeing my babies!!