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!!!

This week has been full of challenges. Brendan has had a lot of problems since coming home from the hospital. He had so much swelling in his airway and irritation from the procedures that he has needed suctioning almost every 15 minutes around the clock. Nobody is getting much sleep.
He can’t wear his cap for more than a minute or two. He just can’t breathe past it.
When I changed his trach on Sunday, we pulled the old one out as usual. Instead of playing his little games or even just talking and waiting, he went into full respiratory failure. His airway closed. Putting the trach back in right away fixed the problem and he is OK, but I will never forget that moment. It is so frightening.

I have had several calls with his ENT’s office and they say that all of this is not unusual for everything they did and that he should be improving. He is. He slept for a couple hour stretches last night without suctioning. It has been bad enough that I actually felt like he may have gotten sick with a virus or something too. It is not knowing that is the most stressful. I am still waiting for the next date for procedures, I am a little more scared going in to it knowing how hard his recovery has been.

We’ve tried to just go about our day as normally as possible. All of this hasn’t really slowed him down that much. It just makes more work for us.

The boys love to play with their doctor kit and give their animals checkups. I am sure not many kids resuscitate their patients with an Ambu bag. We end up with another one of these every time we are in the hospital.

It is still over 100 every day and we find ways to get outside. Bill and Trevor devised this bucket-drop game. I love taking these rapid fire still shots. So there are a lot of pictures tonight, but just in sequences.

Brendan insisted that he get a turn too. He was able to wear his cap long enough for one drop. But once his shirt was wet, he said it was too windy and he wanted to go inside.

We are excited about a little tech project that “went live” tonight. Since everything you have ever thought of has been done before, we were able to find a man that documented setting up a web based remote viewing of the pulse-oximeter machine.
Using a tiny little computer called a Raspberry Pi that is connected to the pulse-ox, we have a little web server that collects the data and broadcasts it to any browser on our local network. It uses Google Gauges code to display it so pretty!
Fortunately the base scripting was already done for me, I just had to get it all set up for our machine. So cool!