I’m sorry if I worried anyone. I am just so drained by everything! Seeing Andrew struggling for 5 days, worrying now about next month. Feeling trapped because I can’t do anything about anything! I can’t make any plans to move forward. I am overwhelmed and was on the verge of cracking! I shut off my phone and didn’t want to talk to anybody. I knew if I typed I would just be crying and I can’t do that in front of Andrew.
What’s changed? Well he is heavily medicated w/his fav drug of choice, delodid! It puts him in a good mood & makes him goofy as hell! Angie can appreciate this one. We were talking about time & clocks which lead to Andrew saying “Mama how can you not like Flava FLAAAAVE?!” He said it in the funniest voice. I kept making him say it but then he would cough hitting the high notes so I had to stop. They put him on a round the clock dose w/ a clicker. He hits the clicker and then does a lil bed dance moving his head and shoulders singing “Oh yea!” Yea, he’s feeling good. Which means I feel good or at least better not seeing him suffer.
Still has fevers, hit 39.4 tonight!! But one click, which his thumb is always on btw, he has the death grip on that clicker. He’ll be great on a game show w/ buzzers now! Or on a fighter jet!
He still spits up blood but not as much. He is healing pneumonia. It’s bacterial. With no white counts, it’s hard to avoid some kind of infection. He still has Halloween pee, orange. Geez it was so clear on Sat.
He’s on breathing treatments now to help his lungs.
I wish I could crawl in a hole sometimes and just escape! I am still digging the idea for a get away for the parents. The unsung heroes in the hospitals! After months in a hospital NOT getting the good drugs, like we don’t need a little R & R ?? It’s not like we’ll get a break when we get home. We’ll have all the home BS to deal with then like our pool needing about $1,000 worth of repairs. Just trying to find someone reliable to do it is a nightmare. We haven’t be able to find anyone good just to clean it! Our bath sinks are clogged & god knows what else will need to be done! It’s overwhelming w/o a major health trauma to deal!
I have to start from square one trying to build my my comedy shows. I don’t know where I’m going to get the energy to do all this stuff! And now we have the added burden of finances to deal with. I am grateful I haven’t had to till now but it doesn’t help things having that added on top of everything else! Any wonder why I’m ready to crack??
SO what did I do last night? I found I like to color. I don’t smoke, if you can believe that! I can’t drink. I don’t do drugs. So now I color! The activity cart came by with crayons and paper…Andrew was on delodid when he said yes to the cart. SO I’ve been busy making signs, which Martin and Andrew make fun of me for! I have signs for the door to try and make sure they shut the damn door when they come in! Easy enough right? Apparently the science of closing a door behind them, eludes some of them! My sign is to help inform I made it w/a Halloween motif! I have a sign for the a.m. parent cart too. They are too loud and I don’t drink coffee. I know! How do I survive!!? It’s amazing I still have hair and some people have heads!! I don’t smoke, I don’t drink coffee, only water in here, no alcohol, no drugs, don’t bite my nails. I just collect heads of stupid people! Yea, I’m a saint! I know some may beg to differ…..like my wee talking heads I’ve collected!
Anyhoo, I decided I wanted some coloring books. COuldn’t think of anymore signs to make….for now. Took me awhile to find a Walmart but I finally found one. I got Dora The Explorer and a Pixar movie one. SO as Andrew coughs and spits up blood I color. Not much else I can do.
To top off my night, early morning, on Friday, the bitc…I mean nutrition person, came in and threw out my organic yogurt, that I love & I can only get at Whole Foods by my house, also my Silk milk and she had her grubby mits on my cookie dough!! Well, how well do you think I took that???!! After the week I have had you can guess. Let’s just say I wasn’t using lady like language! And I snagged my cookie dough from her.
Someone didn’t close the fridge all the way and so she was checking temps and throwing away stuff above 40 F!! After she left I went to get my stuff out of the garbage! That’s right! I did that! My milk was on top of perfectly good food! My milk was still COLD!!!!!! I was pissed! Couldn’t find my yogurt. DAMMIT! I told the nurses how pissed I was that perfectly good milk was thrown away. One called the director they both came up and I told them what I thought! I said it wasn’t my fault they have a sh***y fridge! That all of us have enough stress to deal w/o having to worry how to shut a damn fridge!! It should just shut no problem!! I went on about how I have to make a special trip for my yogurt and it’s not cheap! I was a raving lunatic!! Altho it felt good to yell at someone! They gave me 5 passes to the cafeteria for anything I want. Which is more than my yogurt cost but I still miss my yogurt! I feel violated!
With everything so out of control in my life I can’t even control what food I can have anymore!! It wouldn’t be a big deal if we were only in here a few weeks but we’ve been here 3 1/2 months already and have a few more to go!!! THIS SUCKS!! There are so many restrictions on the fridge it’s not even worth using anymore!! SO I can’t even use that anymore! It’s not worth it! I’m not even suppose to make Andrew’s food either! A nurse is suppose to microwave it for him! What? Do they have a microwave 101 in nursing school now??? It’s hard enough to get the nurses in when he’s beeping! Now we’re suppose to get them to heat his food too??? ARRRG!!!
Word gets around tho. Making a name for myself I have to say. The cashier in the cafeteria even heard about the “situation” last night! Glad she likes me. What do ya think??? Time for me to go home!
Bottom line, Andrew is doing better thanks to delodid and his clicker. The docs don’t seem overly concerned. But the mama gene?? yea, still concerned! Things they hoped wouldn’t be on the cat scan weren’t so that’s good! Andrew was giving away kisses earlier on which was great!! He kissed me all over my face and forehead! Mama gene was happy!
I promised Martin I would be on my very best behavior tonight but couldn’t promise anything if they start with me first! He said as long as I tried my best he would be happy!
THANK YOU FOR ANDREW’S PERFECT HEALTH!! SO IT IS!!