Brendan is HOME!!!!

We were not sure this morning if he was going to be ready. Bill slept at the hospital and Trevor and I headed over right after breakfast. We planned to just trade off and hope that Brendan would be ready to go later in the evening. I didn’t even pack any snacks or supplies for Trevor because he was going to go right home with Bill. Then the decision was made to discharge Brendan, so Bill and Trevor waited since they had the car. Nurse Jennifer showed up to visit and help out with the packing and prepping and transporting (and cuddling and playing!)

We didn’t realize it would take hours to get the official papers and ok to go. Poor Trevor was going insane, he just wanted to run and play and explore and we wouldn’t let him touch and tried to keep him reined in. He was not allowed in the playroom because he was too recently sick. A group of volunteers came by and passed out some stuffed animals which was a big help. Trevor took his new toy for a walk.

We were there well past Trevor’s normal lunch time. I had to get some food for him. He got to try his first fried mozzarella stick.

We got home around 1pm and I am so glad that Trevor took a nice long nap, even after he fell asleep in the car. Brendan seemed tired in the car but when we got home, he was NOT going to nap. He was so happy to be home!! (that and I think his steroid meds make him a little hyper) He had to cruise around the entire living room and play with everything, like he was saying hi to all of his toys he missed. He was a new baby, much more relaxed at home!
Bill and I tried to get the house in order, it had kind of been neglected. We got the boys through evening routine and then Trevor and I hopped in the car to go to the airport!

Gramma arrived safely and we brought her home to the chaos. I didn’t take any more pictures today, I was just too busy and too tired trying to get everything done. Brendan has a fresh bed, all new fresh tubes, a new trach, new filters, new everything. All clean! And he loved his bubble bath, he made up for missing a few days by soaking for a long time.

We are hoping to all get some good sleep now that there are no flytraps involved. Brendan has a nurse that will actually be at his bed and watch over him tonight so we don’t have to worry about him. Tomorrow will be a much better day!

Bill and I traded places tonight because I couldn’t do one more night on the flytrap couch. It is strange to be home where it is so quiet. Brendan and all of his accessories come with a level of noise that we have just gotten used to.

Brendan made great progress today and had a full day of alert activity. He needed less suctioning, had almost no vomiting, and was able to wean his oxygen support down. It just wasn’t enough to come home today. He was on 5L when I left and he needs to be at 3 or 4. (If I never explained, 5L means 5 liters per minute of flow of O2 gas in to his ventilator or HME or PMV)

Brendan played and had fun all morning, and then hit his wall. I saw him getting tired so I did his sponge bath and trach tie change. He passed out in the middle.

Sponge baths are very messy and his sheets were dirty so I had to relocate Brendan so that I could make the bed. Since he was sleeping like a little rag doll, I put a pillow and blanket in the recliner and moved him to it.

When he woke up, he thought it was pretty cool that he was lounging in the recliner.

Both of his night nurses, Jennifer and MaryAlan came by again today and spent some time with Brendan. It is priceless to have even a small amount of time to run and get food, take a shower, or just sit and stare at a wall.

I was very glad for my evening with Trevor tonight and gave him lots of one on one time after dinner. He went outside and was fascinated with his 20ft long sundown shadow. He also likes finding birds.

I am sure there was more I wanted to say, but my eyes are closing on me whether I want them to or not.

My reserves are running low so my brain isn’t firing on all cylinders. If my sentences don’t make any sense, that is why! I am missing Bill and Trevor. They came to the hospital for a short time this afternoon but it was a crazy Brendan time so I didn’t even get to enjoy their company. I couldn’t hug my Li’l T because I was soaked in stinky vomit.

Brendan had a decent night and slept a lot of hours. The ventilator is starting to work for him again so he is able to rest. He woke up feeling a little recharged this morning and had some alert play time. He thought the first thing he would do was climb up and investigate the bright colorful screen and all the buttons and beeps.

Then he noticed the IV pole and hanging bags of liquids and that seemed fun.

He must have had a big appetite with all the work he is doing to breathe!

He doesn’t need the nurses here, he is going to draw up his own meds!

I made a mention of the flytrap couch last night and here it is. The back cushions are very heavy, completely rigid “flaps” that flap up to reveal a wider bed to sleep on, and flapped down, they make an awkward backrest.

The problem is that they are already worn out and the hinge has given up the ability to stay flapped up. So I put them up and I have about 17 seconds to get situated before the bed begins the digestive process.

We won’t even talk about how LOUD Brendan’s crib is to put the side up and down.

I was very encouraged by Brendan’s mood and activity this morning but it wore out by about noon and his exhaustion kicked in again. He has no strength to stay awake, and he coughs and coughs and it makes him throw up. We had a very rough afternoon just trying to make him comfortable to help him try to sleep. It is very exhausting and frustrating. The staff here has taken a “hands off, mom knows what she is doing in there” approach and I don’t get much help when I really could use it.

I feel bad that I was such a mess when Trevor came, I didn’t even get to snap a single picture of my awesome little t-man. He was looking super cute today, Daddy has done a great job of dressing him so far and his juice cup even coordinated with his shirt. Gramma would be proud!
This is no place for Trevor to be, he wants to get down and get in to everything so Bill took him home quickly.
Both of Brendan’s home night nurses came to visit tonight and I thoroughly enjoyed having some non-Brendan-care time, a shower, and some good adult company.

As much of a struggle and frustration as it was this afternoon with Brendan being so sick, it still is improvement over yesterday and that is what counts. Instead of 10L of oxygen at night, he is at 7L. His heart rate is lower. His sats are slightly higher. We are moving in the right direction. The medical team here knows that Brendan is in good hands at home and they want to get Brendan there asap. His oxygen requirements on all of his breathing aids needs to be down to 4L so that our home equipment can handle it. He had no fevers today.

The last positive thing to take away from this experience is the amusement I get from watching heads snap in a double take as some of the old crew sees Brendan and exclaims “Whoa, he looks great! He is so big!!”.