I can’t let Week 37 get by without a single post!

We have had a tough week. The strong antibiotic that Brendan has been taking to eliminate the MRSA infection has wreaked havoc on his little digestive system. Plus, having a little cold virus at the same time did not help. We had to start him on a special probiotic and we are running his food pump really slow and giving him oxygen.

I won’t lie and say that MRSA doesn’t scare me. We just heard today that Brendan’s night nurse was admitted to the hospital because of this same bug. For her, a small skin bump turned in to a boil, then a deep abscess and it was not fully responding to antibiotics. Now she is spiking high fevers and needs to have the wound addressed surgically and has IV antibiotics running. I am hoping she gets relief soon and can get rid of this infection. We are all diligently doing our nasal swabs and meds for both boys.
I don’t want this to push back his decannulation procedure, but I also don’t want there to be great risk to his health if he still is carrying this.

We went ahead with our weekend plans today to escape to fresher air and cooler temperatures. We are currently at a KOA campground in northern AZ and plan to have some simple adventures with temperatures maxing out in the high 70’s. The campground has some nice amenities, we already took the boys on a hay ride tour of the grounds.

The boys played with “Bubble Ray Guns” while we set up.

Hopefully a little R&R is all we need. Our thoughts are with Mary Alyn, and we hope for a quick recovery.

This is just an update on what we have been up to the last few days. Brendan has been fighting off the cold well, I am just getting it now. bleh

Yesterday, the boys wanted to the go the aquarium. We went through the whole thing, then did a few laps on the mall, then went through again.
The boys love the stingrays best. (my cell phone’s camera keeps getting worse!)

This morning we got up and out to the zoo as early as we could. It was still hot, but I took the boys to the Stingray Bay where they could actually pet them. Trevor loved it. Brendan would put his hands in the water, but he wouldn’t touch them.

Trevor turned around and said, “Mommy! He pet me!”

Trevor says “They are soft and rubbery, and just a little bit slimy.”

We cooled down at the zoo’s splash pad and Trevor used a crocodile like a balance beam.

Tonight, we made attempt number two at the Owl Walk. There were no dust storms tonight, and there were lots of really cute little owls!

These are Western Burrowing Owls and they like to live in holes in the ground. They also like to make nests in drainage pipes and other inconvenient areas. They are a protected species.
This whole park has many of these man-made tube burrows for them and rescued owls are relocated here.

They are really tiny and so cute!

What the scenery looks like without the brown fog

One happy owl-lover

Happy Day – Sad Day

The good news is that we have an official date: July 28th!
We have to check in to the hospital at 5:30am for procedures to be done at 7:30am. It is a bronchoscopy with removal of granulation, upper GI scope, and an intestinal biopsy.
He will get his trach removed after he is fully recovered from anesthesia and then he will sleep the night in the hospital. If all goes well, he will come home on the 29th with no trach!
We are excited and nervous!

The other good news is that Brendan’s motility study results came in “totally normal”.

The bad news has a couple layers. Brendan seems to have succumbed just tonight to the cold that Bill has been fighting. His symptoms are minor but he is definitely sick.
Even worse, it looks like we are not done with the MRSA.
Brendan’s nose is flaring up again and Trevor has another spot on his rear.
We visited the pediatrician this afternoon and both boys are on another longer and stronger round of the antibiotic and the whole family is doing the nasal swabs.
We absolutely must get rid of this bug before the 28th!

We went to Walgreens to fill all of the prescriptions and ran in to Iron Man. 😉 😀 🙂