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.

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.