Brendan had a rough night, he had a really hard time being comfortable and was slowly dropping sats. By 4am, the nurse was telling me that intubation was going to be required and that she had gotten the doctor. Fortunately, the doctors held out and Brendan came around and started to improve again by 6:30am. In fact, by the time they did rounds at 9:30am, his lab work was better, his chest xray was better, his monitors were better, and his appearance was better.
Brendan’s current intensivist and his pulmonologist are a husband/wife team and they have spent a long time discussing Brendan and his treatment plan. She suggested a new steroid treatment that they started last night and so his improvement today may be due to that kicking in. They both stopped in frequently all through the day to track him, and it makes me feel good that they have taken such great interest in him.
She also got preliminary results back on the lung biopsy they took Monday. So far, it definitely indicates “preemie lung”, chronic lung disease caused by incomplete development. No surprises there, they are continuing to run studies.
Brendan had an awesome nurse today, and I also really like the one that is starting for tonight, it makes a HUGE difference.
Here is Brendan in his bouncy seat in his big boy bed!
His swelling is greatly reduced and he is starting to look more like himself.
His color is pretty bad, although it fluctuates pretty wildly. He has been REALLY blue at times today, it is really scary. He did have several hours of awake time where he was not crying. When he does cry, it is still a pretty weak little whimper/squeak sound but his voice is starting to come back. A few more days and he will be waking up the whole floor like he used to.
Trevor has had a little issue since last week when he had his immunizations. Some glycerin was all he needed and now he is feeling so much better. Three seriously full diapers in about a half an hour makes him a whole new baby.
He is working on his talking every day now, especially when he is lying on his changing table. He makes a specific sound that is a lot like “hellloo” and “hi” and then he will just say “gooooo”.
And he knows where is feet are now!
I got Trevor some spoons to play with. He seems to know just what to do with him. Once his regularity returns, he will be ready to try a little bit of rice cereal!
Bill is staying overnight with Brendan tonight, and I am home to try to sleep. We heard tonight that one of the two babies on the floor that were there waiting for a heart transplant got her heart today! She is still in surgery now, that whole ward is anxiously awaiting to hear her come back to her room!! I can’t wait to hear tomorrow about how she is doing – the transplant itself is only the beginning of a very challenging and short life.
Glad to see Brendan making improvement every day.
Feet – yay!! And yes regularity really helps! 😀
Hopefully it won’t be long and Brendan will be right there with Trevor tickling each others toes!
Keep hanging in there, little man. That goes for your parents, too.
And, man, if I could put my foot up my nose like Trevor, I would…well, I probably wouldn’t do that. But it would be cool anyway.
Good morning Brendan and family. Keep on doing what you do best little guy. I know you are still having some hard times but you are strong and can make it through each and every challenge that comes your way. Hugs and prayers are with you always from lots of people that love you. Trevor, you’re such a funny little guy. Feet are good and fun to play with and just think, you have two! Love you too Mr. Trevor. Hugs….Tiffanie and Bill. Hugs…
When I an right here getting up-to- the- minute updates on what is going on, as well as being totally involved in Trevor’s care, it would seem a little silly for me to write replies on a blog that I saw being written, but I want to say some things that many people may not realize.
First, I am so very glad that I am able to be here, and be part of the picture taking, the bath giving, the dog feeding, (and even the laundry!), because there isn’t anything I wouldn’t do to help my baby and her babies.
No one really understands the true reality of what it is like for Tiffanie and Bill both physically and emotionally as they go through this rollercoaster ride that has become their lives.
What everyone sees in pictures and updates is the best of the worst, and Tiff does an amazing job of thoroughly reporting the medical facts, posting both serious and amusing pictures, and maintaining an overall positive attitude through it all. Her goal is to keep it upbeat, and hang on to all of the positive, even when that happens through a rocky road.
Good job, Tiffanie, good job, Bill, good job, Brendan, and good job, Trevor (who is going home with me in my carry-on 🙂 ! ).
If any little boy with serious health issues landed in the right family with the right friends and supporters, it is Brendan. How can he not turn out to be a perfect little boy? He is loved by people he may never meet, he is adored by his nursing staff, he touches every life of every person who comes to know him, even in pictures and through Tiffanie’s words.
I apologize for the length of my comment, but some things need to be said.
The love I feel for my children and grandchildren is boundless. I am a very proud Mom and Gramma.
Can’t wait to see Brendan again…. Also very glad that Trevor is feeling better. Our last meeting didn’t go so well. 🙂
From one grandmother to another: Well said Gramma! Praying for strength for all.
Little Brendan is sure a fighter. Hang in there, Sweeties (Mom and Brendan).