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!

We’ve suffered a setback overnight, and unfortunately Brendan had to have his trach put back in. I will try to explain what happened, to the best of my ability to understand the medical terminology.

There are rings of cartilage that surround your trachea to provide it rigid but flexible support. When a young child has a tracheotomy, it is a fairly common problem for the trach tube to cause one or more of these rings to collapse in to the trachea.

Here is a picture from Brendan’s trachea taken during his bronchoscopy. It shows a little bumpy scar tissue, but that whitish bulb protruding in to his airway is a tracheal cartilage.

The doctors all went in to the procedure expecting to find soft scar tissue that they could scrape away easily. All of his studies and labs and numbers gave them no reason to suspect he had this kind of collapse. For that reason, the operating room was not set up with the tools and people they would need to treat it.

But they found during the bronch that when the trach tube was pulled out, the cartilage kind of popped back a bit and did not cause a great blockage.
He did so well with the trach tube removed that they sent him to recovery without it. He had such a great afternoon and really seemed to be handling everything like a champ! I even took him for a walk around the hospital unit to stretch his legs before bed.

He went to sleep and everything seemed normal. But it was about 11:30 when he started to wheeze. As the night when on, he developed a stridor like a child that has croup. He was working harder and harder to breathe. He was sweating profusely.
I am fairly angry at the advice I got from the overnight attending physician. He claimed that it was nasal congestion causing the noise and not airway restriction. On his advice, the nurses used saline and suction to try to clean out Brendan’s nose. He woke up to a 3-person attack on his sinuses and was terrified and disoriented. Needless to say, all that was accomplished was making Brendan miserable.

When his ENT entered the room to check him early this morning, he didn’t even have to make it to the bedside before he knew what was wrong. We had a good long talk about the options and decided that it was in Brendan’s best interest to put the trach tube back in until that cartilage could be addressed. We can only assume that when he is awake and active, the muscles in his neck are engaged and supporting that cartilage. During deep sleep as everything relaxes, it allowed that to pop back in to an airway blocking position.

We are waiting for that doctor’s office to get everything together to setup the new procedure. It will all go almost exactly like it did this time, only instead of a plain bronchoscopy, they will do a KTP laser bronchoscopic excision of the tracheal cartilage. He should still be able to have the trach removed right after the procedure and it should be a one night stay to be sure this problem does not reoccur.

Here are a couple of pictures from last night when we were all celebrating seeming success.

Even sleeping at first, his numbers were awesome.

I know this is just a setback, I am just so disappointed that Brendan will have to experience this whole thing all over again. It is a traumatic experience for him, for all of us really.

I got a few patches of 15 minutes of sleep here and there so I tried to take a nap today. I got down on the floor with a pillow next to where the boys were playing legos and closed my eyes for a bit. I woke up to find a little Brendan had curled up next to me to join me. 🙂 🙂 He is so cute.

We are all just happy to be home, and can start preparing for decannulation part 2.

Getting a 3yr old out of bed before sunrise never sounds like a good idea. We had to check in at 5:30am (So that we could sit in the waiting room at admissions for 40min of course).

Brendan was in a great mood all things considered.

When we moved in to the pre-op holding room and all of the doctors, nurses, and anesthesiologists were coming through in a big parade, he started to get really nervous.

The giant yellow socks didn’t help. His tech and toys weren’t helping too much either.

So they gave him a little Versed. That worked!

Everything went smoothly and they ended up removing the trach even before he woke up. The recovery room was rough until he could get through the cloud of anesthesia. He was very confused and tired. But no trach! And good sats!

By the time they moved us to his private room, he was all ready to play!

After lunch, Bill and Trevor came to visit. The boys discovered the controls on the hospital bed.

Bill is taking a shift at the hospital and I brought Trevor home to relax and make dinner. We will switch again at bedtime.

If everything goes well overnight, Brendan will be released tomorrow! 1219 days of having a trach. 174 trach tube changes. The new chapter in our life starts today!