I keep meaning to do a post but I was waiting for something positive to write about. I don’t have much! I can’t seem to shake this cold, and neither can Brendan. All week it was just runny noses and suctioning with him, but Saturday his O2 sats bottomed out and he is needing a lot more oxygen. Keeping him connected all day is a challenge when he is used to the freedom of running around wireless. Bedtime tonight seems to finally be better.
He saw the doctor last week and both boys got a flu shot. Brendan tells me every day now that he doesn’t like shots and that “that lady at the doctor’s office hurt my leg”. (the nurse) He will really not be happy when we go for their 4yr wellness exam and they get four more immunizations.
Somehow I managed to sprain my ankle in my sleep the other night. It must have been scrambling for the suction machine. I have been hobbling around for a few days.
Bill’s truck was rear-ended. The damage to the truck was relatively minor (especially compared to the other car), and nobody was hurt. It made that quick run to Lowes a multi-hour ordeal because they had to wait for the tow truck to come extract the car from the back of the truck. And then today Bill learned that the other guy’s insurance was either lapsed or cancelled – either way, not valid.
Brendan’s preschool teacher has not been coming these last few weeks. Her husband had a heart attack and was in the ICU, and this Wednesday he passed away. This Friday, we have his big IEP meeting instead of his school time, so we probably won’t see her for another week. Trevor is on fall break this week. He cries now when I drop him off at school. It isn’t that he doesn’t want to be there, he just doesn’t want me to leave.

I try to stay away from reading the news of the world right now. When I do catch up, my problems feel very small, but it never makes me feel better.

So on to some happy things… we harvested pomegranates from our tree today.
The tree has legs!

These things are hard to pick

The tree is much more perky with all that heavy fruit removed

This year’s harvest

The boys picked them, and washed them

And peeled them

I have still not yet determined if we have a pale/white variety of pomegranate (which do exist!) or if we are just not doing something right with our tree which makes the arils never get red. They get pretty sweet and juicy, so we think it is the former.

They boys just love the juicer

Taking apart pomegranates is a lot of work and it took 5 of them to make about 12oz of juice. It was pretty tasty, but most of these pomegranates are going to be chicken feed. We will never eat so many!

I am hoping October will be a better month for us. We had such high hopes for this summer and Brendan’s trach coming out, I don’t think I have really quite adjusted to the reality yet. The waiting and wondering is always the hardest.

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.