Not home yet

Well we had a set back again :(. Addy is now on 1/4 liter of O2 she is still not maintaining her sats on room air. She had a really good night last night and slept well. She threw up twice this morning so they took her off of her feeds and put her back on her IV. They let her go 8 hours off of feedings then put her back on tonight about 6:30 at just 20mL an hour and they will see how she does. The GREAT news is this:
She was VERY smiley and happy today! She had a sparkle in her eye and loved that I brought her some of her favorite toys! She played with them and did Pat-A-Cake!! Yeah! I am so thankful for that! Now if we can just her lungs stronger so we don't need O2 and her belly handles feeds we will be good to go! I am so thankful that so many people are praying for her. I think just about every church in our community has her on their prayer list. This is so awesome to know that people that don't even know this precious angel are lifting her up to our Lord to ask that she get better! I love that I have so many people that I have "met" through blogging that keep track of how she is doing and are praying for her as well. I would link to their blogs like so many do to ours, but I have no idea how!! Someone tell me and I will do it! So I ask that prayers go out for Jaxon, he's got RSV too and will probably end up in the hospital, click on Jaxon's Fight on the left of my blog and you can check on him too.

Yep, I was right C-diff

Look who's moving her left leg!!!

I knew she had it, I'm glad I requested another stool sample. Addy tested positive for C-Diff so she is now on Flagyl. I am so hoping that this helps her poor little bum! She had to go back on O2 again today. We tried taking her off for awhile but she had to go right back on, kept dropping into the 80s. I did get some smiles out of her today though! She was fine for my mom all day but cried for me. I''m trying not to take it personally! I have a feeling that we may come home tomorrow or Friday. I imagine it depends on her O2 sats now. If we have to come on O2 I guess we do, I just hate that! There are many worse things and it's not like we're not used to it, but it seems like such a set back for her. Please continue to pray for comfort for my little girl, I know she feels crappy and is downright sick of it. I don't blame her poor thing.

She is so sick of breathing treatments!

My wonderful friend Susan and I were talking today and she was telling me about something Beth Moore had said (if you don't know her ministry, she is awesome!) she was talking about how bad things happen and we ask God why?? But then she reminded us that bad things happen but God is with us through all of these bad things. I know He is with me, if He wasn't I would be in the looney bin by now. I am stressed beyond belief but I know that He is going to get me through. I pray that we do get to bring Addy home very soon and she can be more comfortable and content in her own home with all of her things and her "people". I thank everyone for their support, I feel guilty asking for prayer when I think of Zoey and Jaxon and Parker and Emma and I feel like such a wimp when we are going through much less than what their families are.

Two steps back

A look of desperation, please fix it Mommy!

Wouldn't you know when you go one step forward you take two steps back :(. Addy had a really rough night, as did Scott. They had to put her back on O2 her sats were dropping into the low 80s. This morning when I got there she looked horrible, just worn out. Poor Scott is too, I feel so bad that I am not staying overnight right now but I am telling myself that its for the best of our entire family and he recovers far faster than I. My shoulder is killing me. I was supposed to see my surgeon yesterday but had to cancel because I had to work. I have a feeling he's not going to be too happy with me. Anyway, I gave Addy a bath when I got there, which she hated. Her bottom is bleeding from the diarrhea. It's awful. We were able to take her back off O2 for the day, hopefully she won't need it again tonight. She is moving her leg some but she is still keeping it pretty guarded. Still have no clue what's going on there. The doc is testing her for C-Diff. Ugh, she got that last year after her colostomy take-down surgery. She probably has it, her system is so sensitive. If it is C-Diff they will start her on Flagyl so that should help. They are treating the sores in her mouth with Nystatin so hopefully that will clear up too. I tell ya, this kid doesn't do just one thing, she ends up with several!!! She pretty much was crying all day until 2 when she finally gave up and went to sleep. She slept peacefully until about 4 so that was a good nap for her. I so pray that she and Scott have a better night, I hope they both get some rest.

This is a precious little swollen foot.

Ah, finally asleep!

IMPROVEMENT!!!!!!!!!!!!!!!!!!

I am so happy to announce that there has been improvement with Addy today! Maybe it was Uncle Kent's magic touch I don't know but we have made gains!! Addy is off of her O2!!! Woo hoo on that note! Her lungs sound a little better and her leg is less swollen but still not moving it like normal. She has the docs stumped on this one. There is definitely something wrong with it we just don't know what. Her doctor happens to be married to Jarika's orthopedic surgeon so she is going to ask his input, everyone is baffled. Her bloodwork didn't show anything abnormal except for increased white blood cells which they feel is still the pneumonia talking. She still has a lot of loose/soft stool but they still have her on 24/7 feeds. The doc mentioned that she may be able to come home tomorrow or Wednesday! I have a hard time believing that just yet since she seems to still have a ways to go but we'll take it! The doc is also working on getting us a home health nurse to care for Addy for a couple of weeks after she gets home so she will be able to get stronger again before heading back to daycare. I love her daycare, they are doing awesome things with her but I know she's exposed to so many things there I'm a little scared to send her back but what can I do?? I have to work so we are stuck. So please pray that home health nursing comes through for at least a couple of weeks so she can get stronger and not have a set back hopefully. I will post pix tomorrow, she SMILED at me tonight!! That's the first time in two weeks are saw an absolute pure Addysen Grace smile! It melted my heart, she is such an angel. Daddy is with her tonight and I just got home to spend some time with the boys. Jarika left once I got home so she could go cheer in Springfield. She was excused from the game since I needed her to watch the boys since I was at the hospital but Utah went to the game (it's a girls' game) so I'm pretty sure he was the motivation for her to go! :) It's so nice to see both of my girls happy! I will post pix tomorrow and perhaps a homecoming!?!!?

Well it's not broken

Addy had a very rough day today. She has pretty much cried since 4 am. Nothing has made her happy. She didn' t take a nap at all so I am hoping she will have a good night. My brother graciously offered to spend the night at the hospital tonight so Scott and I can both get a decent nights sleep at home. Thank you Kent!! I bawled the whole way home tonight, it was really hard leaving her. It's always hard but tonight even more so since I know she is so miserable. Once I got here at home I told Scott that I was really having a hard time with one of us not being with her so he's going to be taking the overnights with her. He can handle it so much better than I. He works in Springfield so it's much easier for him to stay during the week anyway. I am feeling guilty about not being here for the other kids, I miss them so much and it helps having me here in the evening to keep the routine.

The doctor ordered bloodwork today, don't have any results back. Her left leg is still swollen and she is keeping it very guarded and won't move it so he ordered an x-ray of her tibia, femur and pelvis to see if she had a fracture somehow. He read the x-ray and he didn't see anything but he still wants to wait on the radiologist's report. I noticed yesterday that Addy had some white sores on the inside of her mouth. He checked those out and said that it could be Thrush or Herpes. WHAT?? I freaked on that one, he told me not to and it's going to be watched. How that would happen is beyond me, when I am more coherent I guess I will check that out. They did a chest x-ray today and the pneumonia isn't any worse but it isn't any better either. She is still on 3/4 liter of O2 but her sats were in the upper 90s most of the day so hopefully she will get that lowered tomorrow. The doc also ordered a bolus of IV fluids and that seemed to perk her up a little bit. She is on 46mL of formula per hour 24/7 and is tolerating it well. She is having very soft stools but much improved and no vomiting. Her little bottom is raw so we are using Pull Through ointment to help clear it up. For some reason it's worse today than yesterday, I guess since she is eating 24/7 she is going more often. My mom came and brought Addy some balloons today, I think Addy likes looking at them. I liked that there was a Hershey attached for mama! Thanks Grandmama!I have a feeling we have a few more days before we even think about being discharged. Her central line is doing well and the plan is to come home with it in place for at least two weeks. I think that's a good idea, she has such a tough time with IVs and her immunity is going to be very compromised for awhile.

Notice how she doesn't have both feet up like she usually does?

A friend of mine came over yesterday and cleaned our upstairs for us! Thanks Debbie! That is such a huge help, it's so hard to keep up when I'm not constantly at the hospital let alone gone a whole weekend. I am so blessed to have such wonderful friends that are helping so much.

He head is looking better now we are fighting very dry lips!

No real change

There hasn't been much go on today. Addy has been quiet as long as you don't touch or talk to her. He sats are running in the low 90s or upper 80s on 3/4 liters of O2 so we might have to increase it again. She still has a pretty croupy cough and nasal drainage. Scott broght the boys by tonight, I'm pretty sure Avery was pretty upset that Addy cried when he tried to give her a Valentine he made for her. I know she will like it when she feels better. I'm hoping for a peaceful night, HA like that happens in a hospital huh!

update from hospital

I am back in the hospital with Addy for the weekend. We borrowed a friend's laptop so I can post from here. Scott said she didn't sleep great and is now having to be on 1 1/2 liters of O2 to keep her pulse ox in the  low to mid 90s. She has a lot of congestion so is having to be suctioned quite a bit as well. The boys and I enjoyed our evening together. We ate McDonald's, their favorite and watched Kung Fu Panda while chomping on popcorn. Jarika came home a little after 11 so we just talked a little bit. The Jays won their game yeah! She and Utah are coming by later to visit and to go out to eat, it will be nice for Addy to see her sister even though she Will just scream at her like she has everyone else. Her Doppler from last night showed no clots but she is still swollen. I am going to ask the doc again about it, I thin we need to keep on top of it.