On friday she went to the OR to have a PIC line put in. Because she was being put under general anesthesia she was not allowed to have anything to drink for 3 hours prior to going in. They stopped any fluid at 2am, as they weren't sure what time she was going in. She ended up not going in until about 3:30. I was totally annoyed with alot of things that happend that day, the fact that they waited that long and didn't bother telling us so she could at least have a drink was one of them. I understand that they're fitting her in but even a ball park so she didn't have to go without for all that time would have been appreciated. Sometimes I wonder if they realize they're working with a 2 year old and not an adult that understands why they can't have anything. So she didn't have a sip until about 5 oclock pm.
After a long wait she deserved a popsicle!
Another thing that ticked me off was that while she was in the OR they didn't take out her other IV lines (once she has the PIC she doesn't need the others) I asked the nurse and dr. that came in to take out her subclavian line about this and their response was "they don't like to" wow. they don't like to? So instead lets try and have a little kiddo sit still while screaming her head off while they cut out the sutures holding in this iv at the base of her neck.. that's a lot better for her...?! and then switching the iv fluids over to the pic line although it's not actually touching her Lily is still freaking out becasue nurses have gloves on close to her and are doing something.. it's all the same to her and she screams about all of it. That all would have taken a minute or two to do while she was under and caused lily no stress.
Another thing that bugged me was they sent us downstairs and we waited for 40 mins (they told us they wouldn't' call us down until they had the room all set up for Lily to go in) we waited there while countless patients on beds rolled by and OR doors were open and Lily could see in (which she DID NOT like). the OR she went into was still being occupied and once that girl left obviously they had to clean it up and get it ready for Lily.. I felt so bad she was so thirsty and tired, if they had have called us down when they actually needed us she could have stayed comfortably in her room. End of rant.
Walking her into the OR was AWFUL! She obviously can still vividly remember what happened the last time that happened and the fear of what was going to happen was very apparent, that broke my heart. She obviously didn't know it was just for a special type of IV. :( Luckily she already had an iv so as I held her tight they put the meds in to knock her out. I lost my composure once I left her:( It took almost an hour for her to wake up which is long. I was starting to get a little panicked!
So over the last few days Lily continues to be NPO (no food by mouth) they have allowed her to have 200mls of clear fluid a day so around 3/4 cup she thoroughly enjoys any moisture she gets in her mouth.. usually she asks for ice chips or water. She has yet to ask me for food or tell me she's hungry.. I'm calling this an answer to prayer! So grateful she's not feeling starved!
She is still in a lot of pain. Likely due to the chest tubes still being present after all this time. So we really need to stay on top of her pain meds. They stopped automatically giving them to her around the clock within a week of surgery. A few times in the past couple days she has gone to the beach and within minutes she is asking to leave, she just has a sad tired look on her face which lets me know she's in pain. Whenever I ask her if she has an owie the answer is usually no, when clearly it does hurt. Within a half hour of her meds she is back to all smiles and laughing which brightens my day. I hate to see her sad or in pain and not even wanting to play.
Lily wanted to get out of bed to wash her hands... She then proceeds to wash the sink haha! Just like at home, she is a wonderful helper!
Happy Hannah and Grandma!
I was soooo looking forward to Justin coming back this weekend! I was able to get a nice break with my mom, we went out to Olive garden for lunch and then did some shopping. I desperately needed to get some new sandals and I walked away with 4 new pairs! And of course it was so great being able to spend time together as a family!
Lily and Daddy adding to her "treasure life beads"
Today we walked to the"healing garden" It's an indoor garden on the same floor with lots of plants and water features. Lily liked sitting on the side and dipping her foot into the water. We went again later in the afternoon and she was making wishes with coins justin fished out of the water for her! haha When we asked her what she was wishing for she said "for happily ever after"!! seriously you're too cute! I think she got that line from Enchanted! haha Lily is a sponge! She remembers EVERYTHING! She was making wishes for everyone that was there :)
On our walk back to the room Lily got the urge to play ring around the rosie. I was slightly panicked because I didn't want her jumping to the ground! But she just jumped down onto her knees like it was nothing it was so fun to see her so happy! It's amazing what some pain meds can do for a mood!
I tried washing Lily's hair today with a shampoo cap thing.. it looks like a shower cap but it's wet inside with some sort of fleece material. You just stick it on their head and massage it like you would in the shower and that is all you do.. It didn't go over well, Lily freaked out and all it really did was get her hair wet.. This kid needs her hair washed!!!! It's been like 2 weeks!! They won't let me get close to water yet because of the lines that were in her neck.. hopefully in a few more days they'll allow it and I can lie her down on the bathroom counter and wash her hair in the sink!
Lily is officially a spoiled kid. Tonight when grandma came in her room she says "what did you bring me?" haha I laughed because it really was funny... Hopefully she doesn't get used to being spoiled like this!!! Another reason we need out of this place! I can't help but give her things because I feel so bad she's stuck in here feeling bad :(
Hanging out with some toys..
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