The title of this blog pretty much sums up my day. Frustrated. We moved out of the ICU yesterday, since Lia's stats were stable with her oxygen on. Well...that didn't even last 24 hours. We are back in the PICU because Lia's oxygen saturation levels were dipping down way too far (even with oxygen) and taking longer and longer to pull back up. She was having quite a few blue spells (where her whole body turns blue due to lack of oxygen getting to her limbs) and the cardiologist and floor nurses felt that it would be best for her to move back into intensive care where she can be more closely monitored. I guess the good news is that she moved up on the surgery priority list. The cardiology team will be doing their rounds starting at 6:45 tomorrow morning and will discuss a day and time for Lia's heart surgery. The last I heard was that they were looking at Monday afternoon or sometime Tuesday. This is good news, because we had originally been told that the surgery might not be until late next week. I want to get this show on the road. I'm sick of dragging it out. My little girl is sick and her heart needs to be fixed! If it were my decision, it would've been done already. Of course, I'm not the cardiologist, just the mom.
We spent the morning with Ryan's family and then they all headed back to Iowa. My grandparents (Lia's great grandparents) came down from Iowa this afternoon to spend some time with her. While they were here, they sat in her room while Ryan and I went and ate dinner. We actually LEFT the hospital to go eat. It was really nice to get out of here for a while.
Tonight I am really missing Jack. I can't wait until we're a happy little family of four with no worries about Lia's health.
We are still on a waiting list for a room at the Ronald McDonald house. Tonight we got a Ronald McDonald sleeping room here at the hospital. We have a closet-sized room with a twin sized bed, and access to a shower, and laundry facilities, so that's nice. We have decided that one of us will sleep in the recliner next to Lia for half the night, and then switch and go to the sleeping room for the remainder of the night. Our nurse informed us that we may be getting a room at the RMD house tomorrow night. I sure hope so.
I hope everyone had a happy Easter!
'Why do you look for the living among the dead? He is not here; He has risen!' Luke 24:5-6
We spent the morning with Ryan's family and then they all headed back to Iowa. My grandparents (Lia's great grandparents) came down from Iowa this afternoon to spend some time with her. While they were here, they sat in her room while Ryan and I went and ate dinner. We actually LEFT the hospital to go eat. It was really nice to get out of here for a while.
Tonight I am really missing Jack. I can't wait until we're a happy little family of four with no worries about Lia's health.
We are still on a waiting list for a room at the Ronald McDonald house. Tonight we got a Ronald McDonald sleeping room here at the hospital. We have a closet-sized room with a twin sized bed, and access to a shower, and laundry facilities, so that's nice. We have decided that one of us will sleep in the recliner next to Lia for half the night, and then switch and go to the sleeping room for the remainder of the night. Our nurse informed us that we may be getting a room at the RMD house tomorrow night. I sure hope so.
I hope everyone had a happy Easter!
'Why do you look for the living among the dead? He is not here; He has risen!' Luke 24:5-6
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| Lia meeting her Great Grandma B. for the first time! She held out her hand and grabbed Grandma's finger for a long time! |
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| Happy Easter from Lia. |
Comments
Lots of and Many prayers this week. (my heart aches hearing about her cyanotic spells.)
Uncle Dan
Jen Robertson
Sheila Anderson (Heather's Mom)