Addysen Update

Well Miss Addy is giving us a run for our money once again. She is now back on 1/2 liter of O2, her sats were dropping into the mid 80s, not horrible, but not good. She is happy to be reunited with her favorite toy though, oxygen tubing! She isn't as sleepy today, but extremely grouchy! She wants nothing to do with anybody! You look at her, she screams, you touch her, she screams, you say "I love you Princess" and she screams. So she has pretty much been left to have her time with her tubing.

There has been another problem arise today. Her left leg is very swollen. She hasn't had any procedures or lines there so the docs are unsure why this has happened. There is a possiblity that she may have a blood clot so they will be doing an ultrasound this evening to try to see what's going on. It's hard to tell in the picture, I couldn't get her to keep her legs together to compare, she just screamed, it wasn't worth it, but her leg is about double in size.

She is tolerating her formula well. She is only getting 30mL an hour at that same rate, so very slowly, but she is tolerating it and not vomiting it up for about the first time in 11 days. Scott and I are doing well with tag teaming the family, Cooper is having a hard time with me being gone and the unexpected stay in the hospital for the second time in the past couple of weeks, so I am home again tonight, just the boys and me. Jarika is cheering at a basketball game in Hollister (down by Branson) so I think we are going to snuggle on the couch, watch a movie and eat some popcorn. Scott is holding down the fort at St. Johns again and I am staying for the weekend. I don't see her being able to come home within the next couple of days so that is the plan for now. I know there are mothers reading this that do NOT understand how I can be away from my baby. Well, let me tell why. Scott and I have learned in the past 18 months that life with Addy can be a challenge. It is a challenge that we love and would not trade for the world. However, we can not be in more than one place at the time and we have three other children that also need their parents to love them and care for them just as Addy does. So, we have learned from the past mistake that staying 24/7 is not healthy for either of us or our kids. They need me too and I know Addy is fine with her Daddy right now. She is doing ok, just very sick, but she will get better. She could care less if I am there or not right now so that is a good thing. When she is feeling a lot better she will want me there, and yes, I will be there. I am also barely a month post-op myself and my shoulder is hurting and needs as much rest as possible. I am not far away and I can hit the road in a heartbeat, so please don't judge my family. We are a family and every member is important. So as I said, I am going to be a mommy to my two precious boys who have missed their mom these past two weeks. I'm not cleaning, doing laundry or anything else, just being a mom to the boys (and Jarika once she gets home :)

Admitted

Addy was re-admitted to the hospital yesterday. She has pneumonia and RSV. The docs feel she probably got the RSV from being in the hospital last week. That just plain sucks. The doctor put in a Central Line instead of an IV, he knows her history and after seeing the bruise from last week he wasn't going to even attempt it. I hated having to sedate her and put her through that procedure but it is best, no sticks for bloods draws and such. Her pulse ox was low tonight before I left 88, so I imagine if she doesn't improve a little she will be back on O2 for a time. She is on two antibiotics and more powerful breathing treatments every four hours. She has just started very slow feeds of Pedialyte tonight so we will see if she can keep it down. I am home for the night and will work tomorrow. Scott is with her tonight and tomorrow. I am spent, I am still not recovered from my shoulder surgery and it is definitely letting me know that right now. I hate leaving her but unfortunately I am out of sick days at work and get docked a chunk of salary everyday I am gone so it has to be this way or we won't be able to keep up. I cried the whole way home from the hospital. This girl has been through so much this past week. Her weight is down to 18lbs 6 oz. She was 21lbs 13 oz at the beginning of January. Please continue to pray for this angel.
She has finally gotten some sleep today so I am hoping she really improves tomorrow after getting sleep and antibiotics for over 24 hours.

Heading Back

Addy and I are headed back to Springfield to the doctor. She has had much more vomiting and diarrhea so we are most likely heading back to the hospital. Please continue to pray for my angel.

Bones

I have been telling people how skinny Addy has gotten since she's been sick. Two pounds on a barely 20 pound body is 10%! So here are pix of her this morning, 4 ounces heavier than when we left the hospital. I so hope that adding the Pedilyte will help add a little bulk to her! See why I tell people she looks like an Eastern European orphan???

We're ok

I just got back from taking Addy back to the pediatrician. He took a stool sample (which was not done in the hospital), did a chest x-ray, which showed a flattened diaphragm which indicates some wheezing. She has been coughing quite a bit but I hadn't heard any wheezing but my mom did today. So the game plan is to give her 4 oz of Pedialyte between her formula feedings and give her a breathing treatment every four hours and I'm supposed to call him in the morning. She weighted 19 pounds so she has gained a little since coming home from the hospital, but she still looks horrible. He said her hydration was okay, but not the best. So fortunately as of right now we are staying out of the hospital for now. I so pray that she comes around soon. It kills me seeing this face:
And not this one:

Think we'll check it out

Addy has had a terrible weekend. She cried all day Saturday, I'm not exaggerating, ALL DAY! This girl never cries, so it was heart wrenching. She slept pretty well Sat. night, but was still not right yesterday, no light in her eyes, whiny, and didn't sleep well. She is so skinny it is breaking my heart, I can see every rib and all of her spine, she had lost over 2 pounds and on a 20 pound body that is a lot in a couple of days. My mom is coming to keep her today so Scott and I can both work, I'm going to see what she thinks but it looks like we may be heading back to the pediatrician this afternoon. She still has diarrhea, but I do think it's better. She is coughing some but I think it's more of a reflux issue. At least I hope, I really don't want her to have aspirated on something. Please lift her up to our Maker, she needs some prayers.

She's Home!

This is definitely the look of someone who wants to come home!

I got the best birthday present ever! Addy got to come home, she is snuggled into her own bed fast asleep. Scott said neither one of them got any rest last night either so it's been pretty much three nights for her with no good sleep. Hopefully she will get a lot of rest this weekend and really perk up. She is still pretty fussy and has diarrhea still but is tolerating feeds so they let us bring her home. Her IV left with a huge bruise on her head, the pics don't really show how awful it looks, poor thing! Thank you everyone who prayed for her, she bounced back quicker this time than ever before, we just have to pray she stays ok this time! I know she will!

Finally comfortable in her favorite sleeping position, time to pack up!