August 3rd – Brendan seems to have had a big upswing in his mood and his energy. For the first time, he wanted to play with his iPad and he played with his Legos.

Brendan is making a new friend. Meet portable x-ray machine. It visits him every morning.

We had a big monsoon storm blast through the city with heavy winds and driving rain. What motivation to walk to the windows! He took his new Hedwig owl with him.

Gramma and I took Trevor to our friends’ house for swimming time. It was nice to float around in the pool until the storm hit! It was a downpour! The storm didn’t last long, there were just puddles leftover.

August 4th – Brendan had another day that moved overall in a positive direction. He was scheduled for another post-op echo. He needed a lot of medication just to get through it. His chest was so sore. He got so stressed and upset that it affected the rest of the day.

He finally started to recover after a very long nap in the afternoon. We built a cute owl project that was dropped off by the Child Life specialists.

Still tired from the morning meltdown, plus some painful tummy problems.

When sensory overload strikes, make a Brendan Burrito.

Gramma took Trevor to the SeaLife Aquarium. He always has a good time there.

August 5th – After a relatively good night, Brendan got some good news in rounds. Five things are now missing in this picture. Can you count them?

That’s right. FIVE!!!

¡¡¡¡pooƃ ɹoɟ ǝuoƃ – ʞsɐɯ uǝƃʎxo ǝɥʇ puɐ ‘sǝɹᴉʍ ɹǝɔɐd oʍʇ ‘sǝqnʇ ʇsǝɥɔ oʍʇ :ɹǝʍsuɐ

Party blower time! It was excrutiating to have all of the things removed, but we couldn’t be happier that they are gone!

Celebrate!

Once the chest tubes were out, Brendan got seriously HUNGRY! I think it is because they have kept him on a fat-free formula all this time. His body was craving fats. At 6:30am, he was asking the nurse if he could have a hot dog and cheese. He had to settle for pancakes and breakfast sausage.

He made a pancake sandwich!

He actually bit, chewed, and ate about half of a pancake and an entire pat of butter. He nibbled on the sausage. Later, he still wanted his hot dog and he ordered some chicken legs for dinner. Go Brendan! He did have a rough afternoon after all the drugs from the morning procedure wore off. But he settled down for a better evening with Bill.

Another Bathed Brendan Burrito ready for a nap. He gets a chill from the sponge baths, so they bring him toasted blankets.

He was playing with gifts he received from his Aunt Heather P.

He is practicing his levitation spells.

Gramma forgot her scissors!! She bought a new pair just to give Trevor his back-to-school haircut.

I was feeding Trevor sour gummy worm chunks to bribe him to sit still. I guess it worked, but he got a case of the spastic giggles at bedtime.

Brendan’s echo results were very good. His chest xray this morning was excellent and clear.
We were told that he could leave the hospital MONDAY!!!!!!!!!!!!!!!!!!!!!

Barring infection, return of fluid in chest, or other complications, we should be able to bring him home to continue healing. He will have several follow ups and will be coming home on several medications for a while. We are nervous and excited. Brendan’s tears were flowing all day because he just wants to come home. It must feel like forever to him.

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.