Today was just as bad as I was afraid it was going to be. Brendan didn’t sleep too well all night and woke up this morning feeling a lot worse and with a fever. Bill and I had both been soaked with vomit multiple times before 8am. Our washer has been going all day just to try to keep up with clean rags, blankets and sheets. I thought I was going to lose it and felt terrible for having to pull Bill away from work so much for help. Trevor also had a fever but all day, that was his only symptom.

We got Brendan to the pediatrician’s office and they determined that he has a sinus inflammation and it is causing the super watery post-nasal drip that is making Brendan gag and throw up. The doctor also said that there was fluid behind both ears and that ear infections were brewing. So Brendan started an antibiotic again.
He just was miserable all day and whimpered and cried whenever he was awake.

Trevor handled the trip to the doctor’s well. He was only slightly more crabby than normal all day.

He stayed busy while we tried to keep him from bothering Brendan too much. He was “helping” put away clothes.

Brendan was held most of the day and he just slept and slept. His numbers are bad but not like the last illness he had.

We have a nurse for one more night, so we hope that Brendan will get some sleep and feel better tomorrow. If it is a viral sinus issue, it could be 5-7 days until he is fully recovered.

Trevor had a very active evening and video chatted with Gramma until bedtime. He went to bed like normal schedule at 7PM. But then at 8PM and again at 9PM, he has been up crying and he is started to sound congested too. We may hear from him again in the night.

There are some awesome things about May 29th.

First, the boys’ super cool cousin Caleb turned two today! Happy Birthday!! I wish I could have gone to your party, and boy that birthday cake looks yummy!

Second thing about today is that it is the one year anniversary of the day that Brendan was finally released from the hospital after a four month long stay. It was such an incredible day. Brendan got a ride home in the ambulance and started a whole new chapter of his journey. Trevor was so happy to see him back then! So much has changed!!

The staff from the home healthcare company stopped by and brought Brendan (and Trevor) some Elmo balloons and a cake.

We had one of the new nurses come to spend a training day with Nurse Jen. It was super busy this morning.

As much as there was to celebrate, it actually was an incredibly stressful day for me and Bill. Bill had a packed work day and then went to the closing on his dad’s old house. It is good to have it sold and done and there is some closure there, but also a lot of emotion for the whole family.

Brendan was not himself at all today, he was super tired. His eyes always looked glassy with dark circles. He needed more suctioning and he had a sinus drainage that kept choking him so he spent much of the day throwing up slime. I already called the pulmonologist’s office to see if they will do a culture to find out what is going on before we hit the weekend. Wouldn’t you know, this is the first weekend we will have no night nurse coverage Fri or Sat, and Brendan is getting sick. AGAIN.

Every time he has symptoms like this, I get sick with worry. I never know if it will be a simple cold that he will just have to fight through, or if it will be a major illness and land us in the hospital. Tonight as we put him to bed, he felt warm and had a temperature of 99.4. He didn’t run a fever all day.

All day long felt like a broken record replaying. Pulling Trevor down from high places, telling him over and over to stay out of things, making both boys stop messing with the food pump, the crying, screaming, vomiting, suction pump running. We had a ventilator check this afternoon too. I just feel the stress throbbing in my head and I want to go hide under the bed and cry. But, like always, we take it one day at a time. This is a time loaded with big changes and it will all settle down again.

Here’s the only other photos I took today

I have gotten so used to doing monstrous posts that I don’t know what to do with this one! I only took a couple of fast photos, we were extra super busy today.
The good news is that we now have two new nurses that are set to take over so we won’t lose out on our hours. We will have two nights every week that are not covered and that will be a challenge, but we will have four days of help now and that will be a huge relief to me. Especially since the therapists are cut and changed, the extra day nursing can help me keep working on Brendan’s goals.

We got a delivery today with some flowers and balloons from Aunt Letty and Uncle Rich. I am sure you meant to send the balloons to Trevor, at least he assumed so!

He is on the run

We played outside this morning, and Brendan got worn out! He almost fell asleep in the swing. When we came in, he actually took an early morning nap. He took another this afternoon and slept until 4pm! So much for bedtime tonight!! I had to take Trevor out for a drive so that Brendan could rest.

Brendan gets three hours a day off of his feeding pump now, so he can do more exploring. He got all wound up under the kitchen table tonight, but he had fun.

We are getting ready to put Trevor to bed and then we have big plans tonight! Our night nurse is coming in super early for Brendan and our friend Christine is coming to be available if Trevor wakes up. Bill and I have 8PM dinner reservations! This will be the first real date night we have had in two years!

Last year on my birthday, Gramma was here scouring and scrubbing every inch of the house with us so that we could bring Brendan home. Everything is so different now!