Day #6- Getting There

Hi Everyone,

Sorry I am updating so late, as I know many people check this throughout the day. Today has been a good day. Not too many changes, but we are definitely heading in the right direction. Our night was a little sleepless. Our new roommate, although older (probably around 9-11 year old range), had many visitors throughtout the night (vital checks). He went in for some sort of surgery this morning at 9:00am. We believe he has cystic fibrosis. So not exactly sure what kind of surgery it would be, but he is back in our room now, recovering from surgery. So I imagine they will be monitoring him fairly closely tonight, so we could have another sleepless night ahead.
Abbi's night was also a bit rough. I think we are trying to fine tune the pain meds, so while that happens, it means she needs to get uncomfortable for us to figure out that she needs them. They stopped her ibproufen type drug (actually they didn't tell any of us that before or after they did it). So we found her a bit more irritable yesterday and couldn't really figure out why. When we heard that it made more sense. It seemed like Tylenol every 6 hours wasn't doing it for her. So today we got the order for Tylenol and ibproufen (the actual drug, not a similar one) as needed. So we are doing about every 6 for Tylenol and every 3 for ibproufen.

She seems quite a bit happier now that she seems to be more comfortable. This morning she wasn't too happy. Not miserable, but not the girl we were seeing yesterday. She really had no interest in dinner last night or breakfast this morning. For lunch she only ate a bit. She didn't appear to be taking in fluids very much, but when she did, she drank a lot. So tonight's dinner was pizza and she ate almost the entire thing! That was so wonderful to see. She also drank quite a bit of water. She seems to have really perked up now that we have the pain meds more under control.

This morning Dr. Rebeyka came in at 7:30am. Now his nickname is "Slick" (according to me - the man has the most excellent pin-striped pants!). He really is the best dressed man, and so suave. So he walked in, I perked up out of bed in my flannel, pink, polka dot, froggy pajamas (thanks Mom!). I was slightly embarassed! I'm sure he's seen everything walking in at that time of the morning, but still! He said she was looking good (notice how there was no compliment for me? Strange...) and the pacing wires could come out. He said, "Do you live in town?" "Yes." "Well, once those come out you could be on your way home." Um, hello?

But then we still had the cardiology rounds. Those were the surgery rounds. They weren't feeling as generous. They said we needed to work on her fluid intake, and food. They decided to stop one of the diuretics (to help control the in and out of fluids). They said to try to get 1 litre of fluids into her today (easier said than done!). They said she could come off the oxygen and the IV in her arm could come out (it was no longer good anyway). As well as her bandage over her incision could come out. Although, as of 6:40pm, none of these things have happened.

This is kind of the point I get frustrated with the system. I get that everyone is doing the best they can, but sometimes the ways and the means are beyond me. Her wires were removed and I was intially told she would need to lie flat for 30 minutes afterwards to prevent any excess bleeding. Then when cardiology came in for rounds they also said we needed to get her up and walking. So we should take her to the beach. They asked her if she wanted to go, of course she said yes. So after our 30 minutes we were getting ready to go, and the nurse said "Nope, she's got to stay in bed for 4 hours afterwards." WHAT? Can somebody make their mind up please. We were also told (by the nurse) she was "Close Ob" (observation), meaning she needed to be checked every 15 minutes (although that hasn't happened since ICU, go figure). Again, a different story. So I kind of protested and she got to the bottom of it. No, we can get her up and around as we like (meaning we only need to go around with a portable oxygen tank, not a monitor).

So anyway, I find all of this hard to deal with. We've got the surgeon saying "Heck, get out of here." Cardiologists saying "A few more days...if you do this." Then we had a visit from thrombosis. They deal with blood clots, and helping to prevent them. She said that we would go home with her on a tablet form of blood thinner (Warfarin), but we would need to stay for a few more days of monitoring before we could go home. I mean do any of these people talk to each other before they say any of these things? Its just hard to try to decipher what to take in and what to question.

On a funner note, Abbi has discovered The Beach play area. She went with Grandma and Daddy yesterday, and was able to go with Grandma and Gammy this afternoon. She was there for 2 hours today! They have so many great activites for kids to get their minds off of things, and also it helps them to get mobile. Abbi was able to walk from station to station, with a hand always nearby. She is still a bit wobbly, but every step is a good thing. She came home with a butterfly, a piggy bank (that she was able to color), and a little doll that has a little hospital gown that you can color. So Grandma colored on a face, pink shoes, a Band Aid, a sticker, and a needle (at Abbi's request). And a heart, because Abbi's heart was "fixed" by the doctors. Very sweet. What a wonderful way to entertain these kids!

And finally, a funny story from our day. Last night I was able to wash Abbi's hair a bit and get it into pig tails and give her a bit of a bath. But because of her sweating and squirming in her sleep it was just a mess this morning. So I just pulled it all up into this horrible looking bun on top of her head. One of the doctors came in for rounds and said "Oh, you and Mommy have the same hair-do!" Ouch! I mean I get I'm looking a little rough, but seriously?
So anyway, I'm off to have a shower...and do my hair!

PS. I'll have to post pics from our day tomorrow morning. The family room at the hospital is closing soon!