Waiting can sometimes be more exhausting than anything. There was nothing truly significant for Brendan today, just some medication tweaks and trying to keep him comfortable until our meeting tomorrow. I feel nervousness building, hoping that we will have a plan and can move forward and actually make some progress. But deep inside, I expect that we will have a lengthy discussion, followed by a weekend of just more waiting, followed by waiting for tests and for something new to happen. Wait and see.
Every day we wait, he has a greater chance of complications, infection, developmental delay, hospital mistake.. the list goes on. I am scared for him every day, and can only hope that this is going to be a turning point and that he is going to get stronger, pinker, better. An unrelated blood test showed an elevated white cell count today, so now they are on extra close watch for any signs of infection in his incisions or IV lines. So far, no fever or other indications. We just have to try to not be too paranoid and just ….wait.
He was awfully sedated today. He had just a few drowsy moments of interaction and a few complaints.
Little toes poking out of the blanket
He likes his tummy time, it helps his lungs. Having tummy time and petting his beanie baby camel, even better.
Trevor had a date today with a physical therapist from the state early intervention program. Because he was a preemie, he is eligible for a little follow up. He had to get dressed up fancy with coordinated socks to impress her.
He wasn’t real excited about play time with the therapist, although he did talk to her quite a bit with his new “words”. She was very impressed with his progress and says that he is doing everything he should be for his adjusted age, some things he would be doing for his real age and some things even better.
She is excited about his growth and had just a few tips for us to work on.
Our phone rang at 2:30am today. Nothing makes your heart thump harder than the phone in the middle of the night, especially with two family members in the hospital. It was the nurse from Bill’s dad’s hospital letting us know they were transferring him to the ICU. So far today, they have stabilized him but he will be spending another night in the ICU tonight.
Now we just have to continue to hope for the best.
It sounds like you and Bill have had a few draining days. You are doing all that you can right now for Brendan and Trevor and Jack. You are loving them with all that you have. You might end up waiting for tests and what not, but you at least got the doctors talking! And if they are a little cautious, all the better for Brendan so that they when they do act, it will be what is truly best for him long term. It doesn’t make it any less frustrating though! We are all sending our love out to you!
Good Morning from the East Coast! It is Friday! May you have the answers that you are seeking! Hoping that the plans of action for Brendan and Jack make sense to all of you and lead you on a healing journey! We love you. Huggies and kisses to Trevor and Brendan….prayers and caring hugs to all! 🙂
” Stronger, Pinker, Better ”
In every prayer, every day, until Brendan is home, and growing in mind, body, Strength, and spirit.