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.

Sometimes there are frightening things that you frequently imagine, even have nightmares about. Having to bring Brendan to the emergency room with a respiratory illness is one of those things for me. We have worked so hard to get him through everything at home and save that hellish scene from ever playing out. In this case, we just did not have the capability to support him at home.

I hate to say that the actual event was even worse than my very negative expectation. We tried to take him to urgent care first, hoping that there was a breathing treatment or something to help out and keep him at home. They could do a chest X-ray there. But as I feared, the doctor there was not comfortable treating Brendan and sent us to the ER. Once we hit the ER, admission is a sure step two.

While we did have a very kind and helpful main nurse, the admission process is like torture. It seemed like 20 people had to ask the same questions, poke him, listen to him, put more stickers on, add more wires. Poor Brendan was so terrified and worked up so his condition just got a lot worse. The majority of the ER staff doesn’t have any idea how to handle his numbers and his color and his problem. We even had a staff member ask me to summarize Brendan’s medical history in 10 words or less! I just sat there and hoped that we could just go see the doctors that know Brendan and understand his case. After a five and a half hour wait, we finally moved up to the fifth floor cardiac ICU.

It hasn’t been much easier up here, Brendan is scared and exhausted and suffering. Getting everything set up and in order is total chaos for a while. But we really like the doctor on for the night and she knows Brendan very well. He is finally asleep with frequent agitated wakings. He has a nurse and a respiratory tech that remember him and are good.

I hope the night brings some answers and relief. Brendan’s trach culture came back positive for parainfluenza 3 (HPIV, not the flu). It is a nasty virus that can cause croup, so it is surely what Trevor has too. So far they have tried adjusting his vent settings and turned his oxygen to 6L and he is still at only 74% on his oxygen saturation. They tried a Xopenex breathing treatment that did nothing. They took a chest X-ray that looked beautiful and clear. Next they will try a dose of Decadron (oral steroid used to treat croup in ER with regular children). We hope this will help the inflammation.

I have handy Mr. iGuy the iPad so I can do blog updates and keep Brendan entertained. I doubt I will be able to sleep at all.

I have never tried to upload blog pictures from the iPad before, so here goes:

We left the house right at nap time so Trevor had to make do

Brendan tried to sleep but couldn’t.

Unfortunately all too familiar

He is trying so hard to sleep but all the noise, strange place, constant interruptions, and coughing are making it tough.

Trevor went home with Bill at dinner time and Bill got him through his night time routine and tucked into bed. He still sounds bad but should be over the worst of his illness now.

Granddaddy (trainsdad) had to cancel his flight for tomorrow morning and postpone his visit for now. It will be so much better to visit when the boys are both healthy! Good thing the flight was on Southwest and there is no penalty for moving the trip.

The cherry on top is that I now have symptoms too. I will update again if anything really big changes.

We survived the night without a nurse but it wasn’t pretty. Brendan wanted to sleep so badly but he had a very bad night with his numbers and I was constantly repositioning him, doing breathing treatments, beating on his back and chest, and cleaning up vomit. I wish there was more I could do for him to make him comfortable. Bill took over just after 4 this morning and I got a couple hours of sleep.

Brendan isn’t much better tonight. We are hoping that we can get over the hump and move toward recovery. He didn’t want pictures, I don’t blame him.

Trevor might have croup. His behavior is almost normal, but he sounds awful. We had to try to keep him calm and quiet, because when he gets worked up and cries, he has more trouble breathing. Even with a fever, he had no intention of staying calm and quiet.
We put out one of their old mini crib mattresses and Trevor thought it was a trampoline.

Trevor slept through the night last night, hopefully he is over the worst of this too.