Friday, September 21, 2007
Thursday/Friday Ranting Current mood: crappy
WARNING: I am in a bad mood and this will probably be negative in parts.

Well, it's been over a week since Macy Jane had her surgery. I wish I could say that things have been smooth and we are coming home soon, but I cannot. She has had a hard time being sedated and gets agitated easily and instead of nurses trying to calm her down like a normal baby i.e. patting gently or singing, they automatically give her Morphine and Versed. Because of this she is now on Methadone and Ativan because she will go through withdrawals after being taken off of the other 2 drugs. The other day she was fussy and I simply lifted her legs and patted her diaper and whaddya know? She went to sleep. It pisses me off that people automatically go for sedation drugs when all she needs is some TLC. It was so bad that a doctor even told a nurse to actually try something besides drugging her.
Another thing is that the people are so RUDE out here. They think nothing of moving your stuff to the floor so that they can sit where you were. Every night for the past week I have been sleeping on a couch outside of the PICU so that I can get up and see how Macy is doing at any time. Well, last night 2 girls were sitting where I had my stuff and just making themselves at home. One girl had the nerve to have her feet on my pillow and blanket and the other was actually using one of my pillows. I politely told them that that was my stuff and that I sleep there, could they please move.
Well, tonight, there is another couple sitting in a chair in the area. No big deal. I went to spend some time with MJ about 11pm and came out at midnight and they had thrown my stuff in the floor and stretched out on the couch. No regard for the fact that I had my pillows on the couch and my "bed" made for me to sleep in. I very loudly gathered my stuff up and bumped the couch and said you people are so rude! Today in the CVICU I was sitting in a glider rocker and Steve in a regular chair. I got up to stretch and another nurse came behind me and moved my stuff out of the chair and just took it! She gave it to the girl next to MJ, which would have been ok with me but for God's sake, TELL ME! What gets me is that there was another rocking chair similar to mine in the room NOT being used. Nevermind the fact that we are 1500 miles away from home and have been stressed to the max for 4 months now (10 if you count the last part of my pregnancy) and are living out of suitcases. I am tired of inconsiderate people that think the world is all about them and their child. I stay up here probably 16-18 hours out of a day to be with my child and let her know that I am here for her (Steve and my mom are also here with me), but none of that matters to them. It is a hassle if we ask questions to the nurses and always get told "we'll talk about it in rounds and see what they say." Bullcrap, if I ask you a question about how my daughter is doing overnight then I expect an answer from YOU the nurse that is taking care of her, not some doctor that sees her for 5 minutes a day. I swear the people out here need to come to the south and see how it is to be friendly and cordial instead of acting like a cold dead (sometimes gay ;) fish.
Now, how is Macy Jane? We have been hearing for about 3 days now, "oh we will extubate her in the morning (take off of breathing machine)". Well, here we are and still not off. Today it was because they wanted her to have a PICC line placed while she was still under sedation, since her other central line is 8 days old. Well, the PICC nurse came around 11 to see if she saw anything with her ultrasound and she did. So, the nurse gave her some extra meds so she would stay asleep and the PICC nurse said she would be back in 30 minutes after the meds kicked in. Well, it is 1:30 in the morning on Friday morning and still not PICC line. So, that means that if they decide to extubate MJ it will be in the afternoon because she will require so much sedation during it.
She is doing really well as far as her cardiac status goes and everything else. I know that I have to continue being patient and that the doctors know more than I do. I agree with all of that, but sometimes I just come to my wits end and need a venting session. I long for the day that I can hold my little girl in my arms and rock her and sing to her and read books to her. They are so anti-hold out here it isn't even funny. If they are on the vent, they do not get moved. That is something that I miss about LeBonheur. They would at least let me hold her. She opens her eyes and looks at me and they don't sparkle like they did. They are very dull and grey........like a person on drugs. That is all temporary and will improve as she is taken off of the Morphine and Versed, but I miss seeing her sparkly blue eyes and big chubby cheeks in her adorable smile.
I miss my home and my car. MJ is now 4 months old and out of those 4 months, I have been at the hospital with her for 3 and 1/2 months. Sure I have been home for a night here or there, but to trully be able to wake up each morning in my house, to shower in my shower, to be able to take a bath, sit on my back porch, to DRIVE A NORMAL CAR (we are renting a piece of crap 4-cyliner Dodge Neon), all of that would be heaven to me. We are slowly getting there and in the end we will have our Macy Jane at home with us sleeping in her bed, riding in her car seat shopping with Mommy and Nana and Aunt Fiddle Dee Dee, and going on road trips to visit friends that we haven't seen in ages. Don't take the small things for granted in your life because when they are taken away, you realize how blessed you really were.
Sometimes I get bummed when people post pictures of their kiddos doing this or that, or writing about how their superstar did this at this early age, blah blah blah. Sometimes there are times that I think that people brag a little too much about their lives, especially when they know that there are others out there that are having a hard time. Or it could be that I long for the days that I can do that. I try not to get jealous of other things and I will be honest, I struggle with that daily. However, Macy Jane is the best daughter ever and a trully blessed gift from God. I would not trade her or a normal life for any amount of money in this world. If I had to give up everything to save her, I would do it in a heartbeat. Even if it meant moving to this God forsaken state. I am sure some of you are thinking that I am referring to you......and I more than likely am not. So don't worrry
I am sorry to sound so down tonight. It's just been a long 4 months and I am SO ready to be able to provide my daughter a normal, pain free life. I am sure after I find another place to sleep and get a few hours of sleep my outlook will be better, it always is. I do not stay down and discouraged for long because typing this all out shows me how trully blessed I am in so many different areas of my life and hearing from family and friends warms my heart.
I appreciate all of the prayers and donations to the Hearts for Macy Jane Fund. I can never say thankyou enough, but will do my best to say it a lot Please continue to pray......tomorrow is going to be a big day for Macy Jane. Hopefully I can hold her, that will make the world seem like such a better place to me if I can just do that. The plan for tomorrow is: hopefully to do the following: place a PICC line, take out her last chest tube with the hope that pulling it out will make her tiny pneumothorax disappear, take her off of the breathing machine, and get her adjusted to not being on narcotics anymore. That is a lot for one day. She is tough and will get through it with lots of prayers. I better go and find a place to nap for a few hours so that I can be there for her. Thanks so much yall,
Much Love
Bethany
p.s. Please say a prayer for my friend Sarah, she has a little boy named Flynn that will be going in for some testing this morning at 8:30 eastern time. Please pray that everything will turn out just fine and that God will calm her and her husbands nerves!!