I thought that today I could use a break for my mental health and I did not go to the hospital. It didn’t help much, instead of getting a headache from the smells and alarms in the hospital, I worried too much and felt guilty for not going to visit. I did enjoy my time with Trevor today but even he was feeling cranky and cried a lot today and needed to be held.
Bill went to the hospital and spent the entire day with Brendan. He came home long enough to log in to do some work and then went back again to be there to meet the night nurse.

Brendan is doing well from a respiratory standpoint. The doctors are really happy with how his lungs sound and his color looks really good. The weaned down his pressure support and O2 level and he is doing better. But he is absolutely miserable without heavy drug interference. They even had to start using morphine again today which I find upsetting. We expressed to the doctors our concerns about dependency and also the fact that he will need the morphine and fentanyl for when he has his surgery and they need to work for him. He should not be working on building a resistance to it now. It already takes a larger dose to have an effect. The Gabapentin will take some time to kick in. The Ativan is already not working for him like it used to.
We just have to hope that he will get better every day and can get some relief from the pain so he does not have to be like this all the way until surgery time – whenever that might be. I am not sure I can handle months of this waiting.

He does have some moments of awake time without crying, but he is very easily tipped in to a total crying meltdown. Bill was usually able to calm him and was real firm with the nurses and doctors about disturbing him as little as possible.

Trevor got a super long bath this morning and then gave me the same pathetic crying he would use on Gramma when he got out of the tub. He got all dressed up pretty today but had nowhere to go.

The shorts are cute but not real comfortable for naps so he put on some soft pants. Don’t we all just want to lounge around in soft pants?

He would only sleep today if he was next to me so I could keep his little legs moving.

Trevor does love his mobile. I think the lion is his favorite. He talks to it a lot more than this usually, but I love the smiles in the video.

To catch everyone up on what is going on –
Yesterday when Mom and I went to see Brendan before taking her to the airport, he was having a pretty bad day. He was just uncomfortable, inconsolable, squirmy and crying a very sad sounding cry. They had to give him more ativan in order to get him settled down. His heart rate was back up to the 220’s and he could not maintain his oxygen saturations despite being turned up pretty high on 8L/min of flow blasting his little nose.
When we left that afternoon, the drugs had kicked in and he was resting comfortably again.
Around 6:30p yesterday, the nurse supervisor called me to tell me that he was having trouble breathing and that they were bringing in the ventilator. She did not want us to walk in for our next visit and see that he had been intubated without being notified.
Of course, I jumped in the car and raced over there. The attending physician believe that what she was seeing with him was tracheomalacia or bronchiomalacia, which is a weakness or floppiness of the airways. When Brendan gets agitated and his O2 sats drops, he breathes harder and faster. When he breathes harder, the airways are too soft and collapse under the pressure, causing him to get even less air to his lungs. His heart rate goes up, he panics, he breathes harder and causes it to get even harder to breathe. It is kind of like a Chinese finger trap of breathing – the harder you pull, the tighter it gets.
They switched him from the cannula to the cpap machine which gives his lungs and airways tons of pressure support so that they stay open and allow him to work less to get air. He has been very stable on that through the night and all day today, the only problem is that air flow is very uncomfortable, not to mention the heavy bulky apparatus strapped on to his face.
So he is still miserable. There are only two phases of Brendan right now – the awake and screaming one, and sedated with strong drugs one. On top of all this, they still have yet to figure out what is causing him to be so agitated in the first place that causes the episodes to happen.
He is still on for his cath on Tuesday. The doctors this morning felt that he was too fragile to handle the bronchoscopy right now and that it would surely tip him over to requiring intubation. So they will plan to do the bronch on Tuesday right before his cath. He needs to be intubated for anesthesia anyway for his procedure that day. While he is under, they are also going to do an MRI of his head and bring in the neural team to see if there is something that they are missing.
Brendan’s labwork is showing better numbers today. There is no sign of infection in any of his cultures and his kidney function appears to be returning to normal. They are chasing his fluid balance with diuretics, trying to find that perfect balance between keeping his lungs clear and drying him out and causing kidney problems. They have discontinued the Erythromycin in case that was upsetting his tummy.

The neurology team visited while Bill was there this afternoon and before they can get any imagery to look at, they suggested that he try a drug called Gabapentin. According to wikipedia, “Gabapentin is used primarily for the treatment of seizures, neuropathic pain, and hot flashes. There are, however, concerns regarding the quality of the research on its use to treat migraines, bipolar disorders, and pain”.

Brendan had very good nurses over the last 24 hours and it makes a huge difference on how he feels and how we feel! Today the nurse taped his door shut with a big note to see her before entering the room. It stopped the steady flow of all the different doctors going in to look at him randomly and unbundle him and wake him up and agitate him just to listen to his chest and leave him upset. It made them coordinate their timing so that all of the assessments could be done together. I appreciate that they are giving the chance to rest more so he needs less drugs.

Here is a picture of Brendan from this afternoon

These are the ones from yesterday when Gramma went to say goodbye.

These are Trevor pictures from yesterday too.
Gramma snuggling Trevor

Getting in one more bath time before she left!

Out of the bath and in to the monkey pit! I got busted this afternoon while video chatting with Gramma, Trevor was still wearing these same pajamas.

Tonight, Trevor is trying out his crib in his own room. He won’t sleep there overnight tonight yet, but will have a few naps in it this weekend as we transition him in! (while mommy gets used to the monitor and doesn’t stay up all night worrying)

It has been an emotional night, so there will not be much in the post today. Brendan seesawed back the other direction pretty hard and tonight he was minutes away from being intubated again. They managed to gain control and get him stabilized by switching him to an EzPap versus the regular nasal cannula.
I have to wait for the team tomorrow to decide the plan of action, but the attending physician tonight wants a bronchoscopy and suspects tracheomalacia.

I can’t even keep up with the drug changes, starts and stops. I am home for now, but will be back to the hospital at 6:00am to get an idea of the latest plan. In the meantime, he has a nurse sitting in his room with him full time and he is being kept heavily sedated.

Here is the new breathing aparatus

We put Gramma on a plane today to send her home, although we know it broke her heart to have to leave. There are some really cute pictures we took today, but I will have to post them later this weekend. Time to sleep now and hope that tomorrow brings us some answers.