Recovery has been tough this week. It is hard to get Brendan to slow down, he wants to run and play, but he sounds terrible. Of course Trevor got sick, then Brendan got sick, and as of this morning, I am sick now too. It is just dripping noses, sneezing, coughing colds – with suctioning every 20-30 minutes all night. It just means very little sleep for Bill and I.

The worst news came from talking to the ENT on Friday. The next step for Brendan will be to do a bronchoscopy with no anesthesia. They have scoped him twice and have found no problems, but we were told that the sedation significantly interferes with the results.
So Brendan will have to be restrained while they put a camera through his nose, and one through his trach to try to identify where the problem is in his airway.
We have also been told that the likely next step will be tracheal reconstruction. That involves removing cartilage from around the ribs and using it for grafts around the trachea to support it.
Brendan’s horror-scope will be done on November 3rd. I hate that he has to experience these things.

He just gets wiped out

I have been trying to keep them both calm and resting to recover. It seems that when they are sick, they get more hyper.

The boys were fascinated with the juicer and wanted to put the whole fridge through the machine.

Tonight was the “SuperBloodMoon”. It was a total lunar eclipse that coincided with a supermoon, aka moon at its perigee, aka closest point to earth in its orbit. I had planned months ago to find a location to go do some photography and Bill was going to stay home with the boys. I rarely make plans like this, and it seems they always end up surrounded in dramatic times. I felt like crap, but went out anyway. A SuperBloodMoon won’t happen again until 2030 or something.

I visited a Riparian Preserve and spent way to much time doing circles around a lake looking for a place to set up a tripod. There were some cool birds to see, but not many good views to the East.

There were a TON of bunnies. If cute little bunnies fed like piranhas, I would have been stripped to the bone in minutes. There were so many bunnies.

I missed the moonrise which was the whole point of going away from home. I had to sneak shots through the trees.

I was having trouble with focusing, and then I was chased away from the lake by some large mystery animal that waded into the water. I have no idea what it was. As a raised my flashlight, it darted to the bushes again. Time to go!

The rest was shot from my driveway since the moon was high enough in the sky.

We are all hoping for a good night of sleep. Maybe SuperBloodMoon is lucky.

The last 40 hours have been like a bad dream where I just can’t wake up.

Checking in to the hospital was OK, even though we had to get there by 5:00am.

He wasn’t even bothered in the pre-procedure room, he was in a good mood.

The surgery was really fast and the doctor was very positive about how “slick” it all went. He thought there was a good chance that removing the big cartilage would solve the issue.

He went to recovery and we got to our room quickly, with the trach in.

It was all too smooth. When Brendan really started to wake up from anesthesia, he was beyond hypersensitive. If you so much as grazed his arm, he would yell “OW! OW!” and cry. He hates all the stickers and wires and the big IV in his hand with an arm board all taped up.
It was an epic battle just to get him some Tylenol. The orders were entered wrong or cancelled or something. And it took hours to fix while Brendan suffered. That continued all day. I had to ask 20 times for each dose to try to help him out.

A few hours later, the ENT came in and decided to try to remove the trach. I thought he sounded terrible and I was just struck with that huge feeling of dread that it was just not right. But the doctor and nurses assured me that it was OK and he needed some time.

By the afternoon, Brendan was still acting like he was in terrible pain and his effort to breathe with the accompanying noise was just too high.
(loud and sad video)

Bill and I decided that it was past time to put the trach back in.

The nurse said that only the ENT could do it and he wasn’t on the hospital campus. After a great length of time, they finally contacted him and he was going to head in (15-20mins). By then, Brendan had deteriorated further in to a scary state. The ENT called the room and gave Bill and I his permission to put the trach back in. Because the stoma was cauterized during the procedure for the second time, the regular sized trach simply would not go in.
Someone in the vicinity of the room signaled for the crises team and we suddenly had 20 people crowding in the room around the bed like it was some kind of circus.
Nobody could locate the trach one sized smaller (which should have been at bedside already) so we had to use two sizes smaller and I was able to get in this tiny baby sized trach. It was not a long term solution, but it made a big difference.

After going through an interrogation from the doctors on the floor about why I was the one putting the trach back in, we finally were able to get some rest. He slept all night with the baby trach and did not have as bad of a night as I was expecting.

This morning, the ENT came in and I helped him upgrade to the correct size (that we had to get out of our car, because nobody could find the right one)
It was immediately better.

Brendan’s mood changed and his numbers improved and we were told that we could go home. He was doing pretty well for post op, even though it was with a trach.

Brendan is looking for the giant storms that were supposed to hit but never did. (good for us with all the driving we did)

As the minutes crept by like years, we waited and waited and waited. Four hours later with not a bit of news, I was feeling like a panic attack and just wanted to get out. I will probably be notated in the system as “that hysterical mom” now, but having a big meltdown managed to get us out the door in 15 minutes. I am embarrassed after the fact, but we are home.

The next steps for Brendan will be to heal and then see how long it takes to get him back to where he was in July. More diagnostics will have to be done, but the ENT was telling me that what is next is a major tracheal reconstruction where they use cartilage from the ribs and graft it to the trachea to stabilize and support it. He doesn’t know how Brendan would do with such a surgery and has to consult his heart surgeon too.

It was just all so sad and frustrating, but seeing Brendan cry so much just breaks me down. Everything was unpredictable and I just can’t stand not knowing what the problem really is.

On a positive note, Brendan was seriously concerned the entire stay – even through the worst times – about his diaper being dry. He had to get up and use the potty and just loved the little urinal bottle they brought him. He didn’t have a single wet diaper even though I told him it was OK if he did.

At home tonight, Brendan is doing pretty well. He sounds hoarse and wheezy but probably will for a few days.

Trevor has had a rough time too, he is a little more emotional than normal. He cried about going to school too.

He still can be silly. (He loves his broccoli!)

A classmate of Trevor’s had a high fever today and was feeling really sick, but they could not reach his family. They had him resting/sleeping on the rug in the classroom. I am going to hope with all of my being that Trevor didn’t catch whatever it is and bring it home. Not now.

This was probably all too much information, but I have always tried to include enough detail for Brendan to understand later what he went through. It also helps me reference it down the road too as I forget the details.

In the end, he is home and we will provide all the care and comfort possible.
We will love him just as much, trach or no trach.

Feeding the trout at the local Bass Pro Shop – it was something to do to get out of the house and stay in the air conditioning!

They also give free samples of fudge!

Someone loves chocolate but any real quantity makes him sick. Free samples are the perfect size. 😀

Staying busy on little house projects

I wish we were in big excited countdown mode for this upcoming procedure. I just don’t know what to expect and I am feeling apprehensive. To make things really interesting, big rain storms and flooding are expected Monday afternoon!