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!!”.

There is a lot that has been on my mind today about things that I could write about tonight, but as the day goes on, I realize that those things are not all that important and not worth documenting. I don’t want to rant about the hospital because in spite of all of the stress this place causes me, these people are keeping Brendan alive and some of them are doing it with great compassion.

Brendan has not made much progress but he may be marginally better today, it is hard to say. I did finally get the answers I was hoping for though about just why his sats drop so much. This viral infection is creating inflammation and increased pulmonary pressure. Because Brendan’s blood flow to his lungs is passive, increased pressure means more difficulty getting his blood through his lungs to his heart.
His little body is working so hard just to breathe and he is coughing so much that he is exhausted. He spent most of the day asleep in someone’s arms. We are set for night number two. There is nothing they can do for the virus, Brendan has to beat it and then he should improve greatly. Unfortunately, the ventilator isn’t helping as much in this situation because it creates more positive pressure in the lungs. It does do some of the work of breathing so it is a trade off. We allow Brendan’s body a break at the expense of even lower sats.

Bill and Trevor came by this morning to bring stuff we needed and to visit. Bill has been hit hard with this bug and is feeling terrible. Trevor seems to be recovering. I have a painful cough and am starting to feel the sinus pressure. I only saw Trevor for a short time and then Bill took him home for his routine-as-possible day.

While he was here, I took him to the parent lounge. He loved the squishy color-changing floor tiles and danced on them a while to get his wiggles out.

Brendan had a very short period of wakefulness while I bathed him and changed his trach ties. He was happy to see his iGuy.

Most of the day, he was just was so tired

After a very nerve-wracking start to the day with a very blue baby, the x-ray team came and did a chest x-ray. (Still looks good, no pneumonia) When they left, I found this in the bed. It threw me for a moment then I realized it was a lead shield.

It is so hard to sleep comfortably when you are a living spaghetti.

If I use the remote baby spy cam to check in on home, this is what is sitting in Brendan’s crib. Thanks, Bill! That is cute!

Trevor enjoying dinner with Daddy

Brendan’s home night nurse came in on her own time and cuddled him and allowed me to feel comfortable leaving the room to get some dinner and to take a shower this evening. That is priceless and quite appreciated.
We also found out today that Gramma cracked under the pressure of worry and will be returning to AZ after a six month break to help out. This was great news. We can’t wait to see her.

As I get ready to try to get some rest on this weird fly trap of a couch they have, I hear a poor tiny baby down the hall just screaming and screaming. It reminds me of Brendan so long ago and helps put perspective to this stay. I am sad for that family and hope the best for that little one.

I miss all of my boys tonight. I can’t wait to see Brendan’s bright eyes and huge smile again so we can be together as a family.