The emotional roller coaster hit some big hills and drops today.
Brendan is still in need of frequent suctioning, he isn’t sleeping well, he can’t wear his cap, and he had some stinky ugly drainage from his trach site today.
After a week’s worth of phone tag with various doctors, we get a phone call today saying that they can schedule his next surgery for August 13TH!! NOOOO!! We want that to be true, but he isn’t ready.
I was on my way to see the pediatrician this afternoon when I finally get a call back about Brendan’s symptoms from his other doctors. It turns out that his cultures done during his procedure on the 28th came back positive for Pseudomonas and Acinetobacter baumannii, “Two common lung bugs” in the words of his ENT.
I had to drive 45 miles round trip to the only pharmacy in the Phoenix metro area that had the right antibiotic in stock that was in the right form to be put in his tube. I would have picked up a case of energy drinks and drove all night to L.A. if necessary to get it right away. I am glad to get some medicine that will help him improve.
We start the antibiotic tonight and his ENT and pulmonologist both feel a minimum of two weeks is necessary before surgery should be considered.
So the scheduler penciled us in for the next available opening in the OR. SEPTEMBER 21!! It hurts to miss the early window of opportunity but we have to do what is safe for Brendan.
The other thing we have to watch is 4 tiny bumps on his right eyelid. After our battle with MRSA, I am super paranoid about pimples on his face. His pediatrician gave us a script for Bactrim again. If the pimples get worse even while taking the other antibiotic, he will have to take both. NO MORE MRSA!!!
It is especially hard to deal with Brendan’s symptoms when he does not feel like taking it easy. The boys are restless. Today, Trevor begged me to take them to the Space Museum. Since it is the first week of school for a lot of kids out here, the place was EMPTY!
This is the “Hug a Planet” wall. It is an animated projection that reacts to your shadows and motion. You can bop the planets all around and if you can catch one, it will give you little factoid bubbles about the planet. Really cool!
The rotunda filled with big murals and big building blocks is Trevor’s favorite place to go.
Trevor says this is a fire station
Cuties!
They had to be wearing their space shirts to go to the space museum!
This is a vortex display, like a dust devil.
I wish I would have recorded Trevor’s conversations with mission control while he pushed buttons. He is hilarious.
I am so happy that they cooperated for these photos!
They put us in a room with a rocket at the doctor’s office too.
Brendan needs to get better so he can get his procedures done. He has been through enough!!!
Poor Brendan! Yes, he has been through enough. I’m glad to see he keeps his big smile and still had fun. I can’t imagine how miserable it must be to deal with how he really feels. He takes it in stride, and it’s sad that it is a part of his life that he just has to accept. One day he’ll be suction-free and tube-free, and be able able to sleep well. He’s a strong brave little boy! And a very handsome astronaut!
The pictures from the Space Museum are adorable! It’s easy to see why you’re exhausted at the end of day! I don’t know how you do it day in and day out! You are amazing.
I hope Brendan heals fast on his new medicine. Maybe they will find you a cancellation for an earlier date for his procedure. We can hope!
Happy Birthday, Bill! xo
Lots of love and hugs,
Gramma xoxoxo
Good morning from the Lake House! So wish that we could wave that magic wand, and poof, all is well!! 🙁 Brendan should have free passes from all these life speed bumps!! Of course, any of us would have driven, walked, flown, whatever, to get the right medication for Brendan…hoping this knocks those microbes into outer space!! Speaking of outer space, the museum looked like tons of fun!! Loved all the pictures!! Prayers..for strength and successful treatment…..comforting hugs, and lots of love!! 🙂
Sometimes, it is difficult to put together that ” Happy Smiling Face “, and the image painted by the words I read. Brendan, you really are “SOMETHING ELSE”
😉 😉
Hoping that the new medication brings an end to what has been, and opens the door to a future filled with good and wonderful things, and experiences.
Wouldn’t it be the greatest Birthday present ever, if that door were to open today.
Happy Birthday Bill.
Sounds like this really has been a rough week for everyone! The pictures are adorable, and I know you try to post the positive moments of your days. I hope the little bumpies turn out to be just pimples or heat rash, and Brendan won’t have to double up on the antibiotics. I am glad you guys scored the quiet time at the museum so the boys could explore without tons of other crazies!
We hope the antibiotics do the trick and B feels better soon. It seems like a long way off, but Sept 21st will be there before you know it.
We had those building blocks at our Science Center for a really long time – they were so much fun! The boys are quite the carpenters (or architects?).