Year 6 – Week 41 – Day 2

I apologize for the lack of updates. I have not been in the mental state to work on blog posts. We had a rough couple of days. Lots of pain, wincing, crying, and throwing up. There were nursing mistakes like formula leaking all over Brendan and his bed three times in one night due to failure to open the clamp on the tube. Getting Brendan out of bed to clean him up and change his sheets is tiresome and painful to him. The special low fat formula he is on smells so bad that it starts to trigger a headache and nausea in me. Bill and I trade every 24hrs around lunch time so that we can sleep at home. It sort of feels like each day is 48hrs long. All I want to do at the house is sleep.

Brendan spent most of the day yesterday looking tired. He was wincing and saying ow. He is fed up with tape and touching. His chest tubes are so sore that he starts to cry when the nurses or doctors just look at them.

He has gotten some special rewards, but he just doesn’t have the energy to play with anything.

If he can’t walk, he at least has to get to his chair to sit up. Chest tube drainage continues steadily and moving around and walking really helps.

He just can’t get comfortable. He pulls his hair and scratches at all his incisions. It is just heartbreaking.

Yesterday, August 1st, he was taken to Interventional Radiology. Under anesthesia, they removed the central line from his neck and the IV from his right arm. They inserted a new central line on his upper right arm.
When he got back, he had a big treatment with IVIG. (Intravenous Immunoglobulin) It is a blood plasma product that helps replace antibodies lost from the chest tube drainage. It boosts his immune system.

A decent night of sleep on top of the IVIG must have really helped for today. He was in his chair early this morning, feeling a little more alert.

His chest was undressed and he got to look at pictures of his incision. If he would stop picking at it, it is healing very nicely.

He is having a snack – his favorite pouch and they got him some fat free milk. It isn’t his favorite milk, but he is happy to have it. I can not tell you how relieved I was to see his bright eyes this morning. I have felt so lost these last couple of days worrying about him and his pain.

We have finally convinced him to try switching to the nasal cannula for his oxygen, but he is having no part of it. He hates it and keeps moving it to his chin. Right now he is sitting at 94% O2 without it on. That will be normal for him for a while, and he won’t have to be on oxygen. Right now the O2 treatment is to help lower lung pressure more than it is to bring up his saturations.

Sitting up in bed is something he couldn’t do yesterday. Don’t get me wrong, he still has a tremendous amount of pain. He is getting oxycodone to help get him through his walks. I am just happy to see some bright spots in the day.

He got his first mail delivery today. Thank you to Whitney and her girls, Virginia, and Henry for sending him get well messages. He got a big smile from this drawing. Thanks for the package, Henry and family!

Tonight he is restless again. He is having trouble sleeping. His tummy is hurting. The good news is the chest tube drainage on the left was down to 15ml for the day. It is very close to being able to come out. The right may take a few more days, but it is reduced.

Trevor has been treated like royalty. Gramma has been carrying the workload at the house and we greatly appreciate it. She took Trevor to the playground.

She bought him a new tank. He created this giant “army base” for his tank to defend.

Today they went bowling. I think he had a great time.

NERF wars continue only now Trevor has his tactical vest and extra ammo supply. He is going to need it. Gramma is actually a pretty ruthless NERF war player. 🙂

I have a number of cute videos but I don’t have the energy to process them right now. I will post them on another post. I have to pat a Brendan and help him try to get back to sleep.

One week complete.

Year 6 – Week 40 – Day 6 – Update #1

After a long night last night, I have a bit of brain fog. Brendan was very very tired today too and drifted in and out. He did manage to keep all of his formula in his tummy today. No more barfing.

He got a huge IV manifold taken off the IJ line so it is much easier to sit up now. He went from 12 IV pumps all the way down to four as they weaned post-op medications.

He got one of three chest tubes taken out today. I was startled by how long the tube was inside his chest! Yikes!

It was walking day. Brendan finds a way to accomplish his goals every day. He amazes everyone. They told him he had to walk, so he walked farther than anyone thought he could. He was totally drowsy and tired from pain meds and his eyelids were all heavy. But he made a long walk all the way to the end of the hall to look out the window! Unreal!

“I would rather be sleeping, but I’ve got this”

Just his usual, “Ow. Ow. …. Ow.” No crying. He did so well.

He likes to know he is not alone.

Trevor has slept with his musical seahorse since he was a tiny baby and still plays the music at night to fall asleep. Last night when he was wide awake, Brendan said that he wanted to turn on the seahorse. He missed the music from Trevor’s bed. So we brought him one.

It is Bill’s turn to sleep at the hospital tonight. Brendan got Daddy-cuddle-time.

Brendan says he wants to go home, but he doesn’t cry. He woke up from a nap today and said he was ready to go to the Lego store. He said that he was going to need a big Lego set for this.

Trevor and Gramma came to the hospital to visit too but Brendan was a little out of it. Tonight, Trevor and Gramma played NERF War again. Trevor is being spoiled and pampered. Gramma is reading him his story for bed now. We will hope for more forward progress tomorrow.

Year 6 – Week 40 – Day 6

It is the wee hours of Sunday, July 30th. About 2am. Brendan had a roller coaster today for sure.

Let’s start with some cute Trevor. Last night we rode the SkyTrain in to the airport to pick up Gramma! He was very excited. He had a hard time waiting all day. This video didn’t start soon enough but he says “This is my Ultra Happy Dance”

Of course, the next morning they went shopping to Toys R Us and Trevor came home with his most favorite thing ever. Giant NERF. He tried to have a NERF war but gave Gramma a gun with only 2 darts.

Bill gets the tiny little single shots

He has to put on a costume for this treat.

I can only imagine that little guy is warn out. We are so appreciative that Gramma could be here to help Trevor cope with the stresses and find ways to have a blast… literally.

Bill spent Friday night with Brendan. Bill says Brendan slept pretty well and had a good night, he just needed lots of attention. Around noon, I met him for lunch. Brendan was awake and wanting to play. He just was so foggy and sore and had heavy eyelids. He was trying.

His goal for the day was to sit in the chair. Just getting to the chair is a huge event and took four people. He stood on his feet and was able to walk about 5 steps to the scale to get weighed. Sitting on me counted as meeting his goal of getting to the chair. So I got to cuddle him for a few hours while Bill was there to help.

After that, he was more alert. He was able to build his Lego set himself.

And he was sensitive enough to not like the picture of his hair being all crazy, so he asked me to retake it.

He gave an interview for his fans.

The nurses could not believe what a cooperative little trooper he was today. He said “Ow” about 8000 times, but did everything that was asked of him and more. All that effort wears him down. He tries to sleep, but his little winces come through.

We are trying to keep him comfortable.

He is still quite bloated and they are managing his ins and outs carefully. The chest tubes are draining at an appropriate rate now. But they started running his feeding pump and trying to get some food in him and it has not gone well.
He coughs and throws up any formula that they try to put in. It could be the pain, the slow bowels after the double anesthesia and morphine doses (no poops since surgery), the bloating around his stomach, his gag reflex when he coughs up mucus, the special formula they are giving him. We don’t really know yet why. Most patients post-op don’t have much of an appetite. Brendan gets his food whether he wants it or not. They did go slow, but he just must not be ready.

Three times he sat up and gave notice that he needed the bucket. The last time at about midnight, he was mostly asleep and he did not seem to have a second of warning. He threw up all down his neck and chest. I wouldn’t write all about this except that it meant that all of his dressings and his bed sheets had to be changed.

They gave him both morphine and ativan to deal with all of the moving and tape pulling. It knocked him out for about 14 minutes. Then he woke up for all of the work.

It took an hour and a half to get him all fixed. Then we gave him a toasty blanket from the blanket heaters and he said he was comfy. They gave him a dose of benadryl to stop all of the itching and scratching he is doing. You would think all that would knock him out. He has remained restless and keeps checking to make sure I am still here. He asks to hold my hand. He is talking in his sleep.

I really hope he can get some rest. I hope that he has a better day tomorrow. They removed the IV line in his right hand and took off the arm board so now his hands are both free to play. That opens up a lot more possibilities. He still has the central line in his neck, the one in his foot and the one up on his left arm. We were told that the center chest tube might come out later today. One piece at a time. We knew this would not be easy.