Okay, I mean long week. Here's the update for the week. It sucked. I hope Taylor doesn't read this because that word is actually not allowed in my house.
Here are the details if you want to keep reading. I have been sick for 4 days (finally beginning to feel better today), we'll start with that. Fever, stuffy nose, sore throat, the works. Unfortunate timing for David, because Brinley has gotten up for hours in the middle of the night for 3 or 4 nights in a row. I mean for hours. Thank you steroids. I have been OUT so he has been on his own until last night( since I was beginning to feel better, I figured I'd give the poor guy a break). I have to find humor in all of this or I would absolutely lose my mind, so here it is.
Brinley is hilarious when she wakes up at night. It's like someone snuck into her room and wound her up and let her go on us. Her mouth is moving a mile a minute and her feet are too. Someday I will videotape it because it is so funny. David said all he could her last night was "thump, thump, thump, thump" of her running around downstairs. Insane.
On Wednesday, Brinley caught the second virus going around our house and went down to the hospital for a dose of antibiotics and a release for decent counts. Thursday, fever is back. I convinced them she has a virus and is acting fine and they say to follow up on Friday since the fever is low. Thursday night was met with some major hacking of junk. So I call first thing Friday, getting nervous about lung infections and all. We go in at 10:00. Here is a recap of our day.
10:00 - Arrive at clinic. Nurse comes in to quickly access port so we can be "in and out" once we see her counts are fine and get a culture. Ahem, mom forgot to put the numbing cream on the port, the numbing cream that takes 30 minutes to work. Mom of the year award number one. More to come. Nurse applies numbing cream.
10:30 - Nurse comes back for access now that site is numb. Access goes as usual, crying and holding down. Nurse goes to draw blood, everything comes out fine for culture, all of a sudden port stops working and no blood will come out. Nurse tries and tries, calls on other nurses to try and try, to no avail.
11:30 - This isn't going to work, no matter WHAT position Brinley is placed in, and they order TPA to put in the port to dissolve any clots/blockage. TPA needs to sit for 30 minutes to work. In the meantime Mylee is getting hungry. She is more hungry than usual because I rushed out the door without feeding her rice cereal. Mom of the Year award #2. Mom doesn't have enough milk. Let me get the bottle to give her some formula. OOPS. Forgot to bring a bottle. Award #3. Try to nurse what little I can.
12:30 - TPA is not working either. What now? Either de-access and re-access, or do a finger stick. Um, finger stick! And hope the port works next time. Finger sticker comes, sticks finger, Brinley screams and is very angry. Will not speak to finger sticker. I actually said "can you say thank you?" then I realized I was telling her to thank the person who just sliced her finger and squeezed out her blood. OF COURSE SHE WON'T SAY THANK YOU!! Call David, I won't make it home in time for Jade to come home from school. David goes to the rescue.
1:30 - Counts come back, ANC is 300. Neutropenia. Again. I'm sorry, did someone say maintenance was going to be waaaaay easier? Direct admission....unleeeeeeess the hospital is totally full and your kid actually looks fine....let's send her home. Which is fine with me because she really is fine, just caught the same stinking virus Jade and I had. However, we need to make sure it really IS viral, so let's stick that tube up her nose and down her throat again so we are comfortable sending her home. In the meantime, poor Mylee is in desperate need of a nap and getting fussy. Poopie diaper, mom didn't bring wipes because we don't have any, on my "to do" list for today. Ha. Award #4.
2:00 - Nurse comes in to collect mucous. Brinley immediately recognizes the tube from the ER last week and starts panicking and crying. Mom, once again, holds her down so nurse can stuck the tube up her nose. There all done. That's funny, I didn't hear it suck it out like last time. Did we get it? Yes, says nurse. Oh wait, tube was not actually connected to suction device. Nurse, alsmost in tears for making such a mistake (she gets the nurse of the year award) (btw, she is one of our favorites, so I am not mad at nurse), tells Brinley we have to do it again. Brinley wails, Mom holds her down, nurse sticks tube up nose again, down throat, Brinley gags, coughs, hacks, and tube comes out with sample. Another nurse holds Mylee, who is screaming in unison with Brinley. One more thing down.
2:30 - Doctor comes in and explains that we need Brinley's bone marrow to recover and start producing white blood cells again. She has had way too much neutropenia and her marrow needs a little help because it is dangerous for her to be neutropenic so often. It is expected in the beginning phases, but not in Long Term Maintenance. She needs a neupogen shot every day until her counts recover, hopefully within a couple days. Nurse orders neupogen shot and antibiotic. We wait, and wait, and wait.
3:30 - Ahh, antibiotic arrives. Start infusion....20 minutes later....infusion complete. Take dressing off port, Brinley wails, de-access port. Gets shot in leg, one last little jab to make her day even better, as if it wasn't already good enough. Hope you are picking up the sarcasm. Brinley tells nurse "you maked me have blood!" from shot site. Nurse says sorry, Brinley will not say goodbye to nurse after being silly with her most of the day. I guess if you stick someone with a needle on their way out with a big smile on your face you aren't gonna get much of a sweet goodbye, no matter how much you bonded throughout the day.
4:00 - We are in the car, Brinley is sleeping, Mylee is hungry (and ate a HUGE bowl of rice when we got home) and I am dumbfounded wondering if I am really in the right life. David has to work late because of all the time he missed today, so I am flying solo for a while.
9:00 - Kids are finally in bed, after many tears, books, songs, and more tears. David arrives home from work. We look at each other with bloodshot eyes, and sit down to watch 2 hours of Lost and forget about the day for a while. Time for bed.
The good news: I actually made dinner. Oooooh, the temptation was strong to eat out after this day, but I had to make up for all of those "are you seriously the mother of four" moments I had at the hospital. And now I am typing on the computer because if I look anywhere else I will see what a mess the house is. When is Disney World? Ten Days? Will everyone be healthy? We shall see.....