Today was all about a headache. I woke up with it and it got worse as the day went on. I got through the morning by making Trevor help me do a ton of laundry and chores and I kept him out of ‘baby jail’ as much as possible. We barely made a dent in the mess.
We had the big quarterly meeting about Brendan’s therapies today. We found out our PT is being swapped for someone different. We pushed for some additional therapy hours and they granted us two visits per week instead of one. Our current OT team lead can’t fit that in her schedule, so she will need to be switched out too.
So while they listened to my plea for more/better therapy, we will have another big transition to make to new people.
Brendan is still on 5L of oxygen. We tried to turn him down to 4L and he wasn’t able to maintain his sats. You wouldn’t know it to look at him though, he was smiling, playing, crazy Brendan all day long. He even impressed the therapy team with his cruising and how clever he is at getting around the things they want him to do.

Trevor was extra emotional and easily set off today and it made my head worse. My best attempt to take a nap while he napped was interrupted by phones, doorbells, questions, dogs, etc. When he got up, I tried to make the day go by faster by running him to Kohls to use up a $10 cash coupon. I found the perfect little sweatshirt on sale.

To the lady in front of me at the checkout line that held up the 8 people in line behind her for 20 minutes while she dug in her purse for every last crinkled piece of paper trying to find the best coupon to save on her $12 purchase, all the while Trevor is screaming and trying to climb out of the cart…
I hope that your dog bites the head off of that doll you were buying and then poops it out on your bed pillow. Seriously, I was that annoyed. I might have forgiven her if she just walked away after paying, but then she stopped short and came back to hassle the clerk more and demanded a manager because she didn’t get a scratch off coupon thing (that you only get for spending more than $30 or $50 or at least more than $12). I paid for my two sweatshirts with some pocket change (got a cute firetruck one too) and left.

The day was rough, Trevor tried to make it up to me by vacuuming.

Brendan discovered the camera on the ipad and took about 100 “selfies”, some were cute.

Most came out more like this

Now the house is dark and quiet and all of the boys are sleeping. We survived another day.

It was another hectic day, but at least there were no hospitals involved. After breakfast, we picked out another train set. We set up Radiator Springs.

And then it was time to crash the tracks

Trevor simply would not nap today. He was in his crib for an hour and a half playing, jumping, dancing, etc. Brendan tried to nap, but within 15min of being put in his crib, chaos broke loose and he woke up. So we had two exhausted boys tonight.

It was oxygen refill day. He always comes during naptime.
Trevor missed the garbage truck going down our side of the street, so he went out to see the oxygen truck instead.

Getting the tanks refilled is loud.

The garbage truck finally rolled down the other side. Trevor was happy to see it, it has been weeks. And he gets a two-truck-Tuesday bonus.

It was time for the boys to say goodbye to Granddaddy. Trevor was ready to take him to the airport.

Trevor does not like to be held still for a photo

We came home and sorted some more train pieces. The pile doesn’t seem to get much smaller.!

Brendan has neither improved or declined as far as his breathing, oxygen use and numbers go. He was very active and playful and smiley though. We are hoping he can beat this bug soon.

We got up this morning thinking that we would just be visiting the pediatrician. I called as soon as they opened and they were able to get us in at 9:40am.
The doc was very sad to see Brendan working so hard to breathe and needing so much oxygen. He really didn’t like how his lungs sounded either and expressed concern about pneumonia.

He asked the nurses in the office to do a breathing treatment so he could listen again and see how much it helped. We had to improvise a contraption to get him his mist treatment while he was wearing an HME for travel.

Even though the breathing treatments helped some, the doc still was uncomfortable with Brendan’s breathing retractions and lower left lobe. In order to rule out pneumonia and play it safe, he asked us to take Brendan to the emergency room for his chest xrays. If the xray came back ugly, they would do IV steroids and bloodwork and so on and so on…

So we popped back to the house in order to pick up some food for Trevor and supplies for Brendan in case he was admitted and headed to the hospital.

Our doc had called ahead with orders and specifically asked that they try to take it easy on Brendan. It was definitely a better visit this time, far less people tormenting him all at once. He was exhausted by the time they got him all hooked up.

We made the epic journey across the two big buildings to go to imaging for xrays. The doctors came back and said that his chest looked good. No signs of pneumonia. They did Brendan’s favorite nasal swabs and trach cultures so in a few days, they will call me with results and we will hopefully know what bug is bugging him.
Brendan says for all they do to him, the least he can do it leave some teeth marks on their equipment.

They got consult from Brendan’s pulmonology team and his cardiologist stopped by to see him and check him over. Then they agreed that as long as we were comfortable with caring for him at home that they had no need to admit him. He just needs to beat this bug once and for all.

We left the house at 9:20am and Brendan and I got home at 5:30pm. (Bill and Granddaddy took Trevor home for his nap)
I did not feel like cooking.

It is good to have the house back to “normal”

I will never take for granted two boys at home asleep in their own beds.

We got a mini dust storm and some rain with big booming thunder. Both boys handled the noise very well and are sound asleep.