STRESS, today was full of it. Lack of sleep, fear of the unknown, toddler angst, and violent vomiting amplify the stress and we just don’t have a lot of reserves for coping.
We are still not sure what is wrong with Brendan. I don’t know if it is the new tube placement or the change in feed rate or the drug wean or maybe even a stomach bug. He had a decent day on the whole, but he had several spells of just extreme retching and throwing up a pretty large volume of mucous and bile. We put in a call to his GI doctor today and they just had us slow his rate down and said to call in 2 weeks. Of course the new tube procedure went so smoothly but now it is causing trouble, just like I was afraid of. I hate it!
I just played out in my head having to go back to IR to check placement or get it redone or ending up having him admitted for diagnosing the problem. Or even just having to pack him up again to see the GI doctor. It causes me great anxiety, but we just have to take it day by day.
Trevor is so strong and curious and stubborn and just wants so badly to explore. Keeping him locked up in the living room makes him so frustrated and he is just whining and crying too much. It doesn’t help that he was awake at 6am and has a little tummy trouble himself so he was especially desperate today.
Tuesdays are so hectic now with PT and OT in the same day. Plus, we had feeding pump issues and had to have the company bring us a replacement pump. Trying to participate in therapy and keep Trevor safe at the same time is enough to make me crazy and tired.
We waited to hear and worried about Grampa Dusty and Gramma. He was put through the ringer of tests today and now it is determined that he has a gallbladder infection and the gallbladder has to be removed. There are complications involving the surgery and hopefully we know more tomorrow.
Our frequent commenter Glenna is also waiting for an important surgery after a barrage of testing.
To make things tougher, they all got buried in snow today making travel very dangerous. We have everyone there on our minds and hope for the best.
You wouldn’t know by the pictures/videos that there was anything wrong. So I take a deep breath and focus again on the positive that I can find in the day. I love these sweet faces and will get up again tomorrow to do everything I can do for them.
This baby does not seem cranky at all!
It always helps Trevor to find something new for him to do. I found these rhinos in a drawer. From the stamp on the bottom, it seems that they were happy meal toys from McDonalds in 1998. They are pull-back/release racers and Trevor was captivated for a while by rhino racing.
And he ran them up and down manually too, like his trucks.
Brendan was too tired to do much for PT. He was still recovering from one of his bad spells. They leave him drenched in sweat and exhausted.
When OT showed up, we used our new strategy. When he started bawling, we just mostly ignored it and the therapist started to play with Trevor. She broke out bubbles and was catching them and letting Trevor pop them. Needless to say, Brendan got interested and forgot that he was too mad for therapy.
He loved popping the big bubbles and of course was thrilled with everyone clapping for him.
“Where did the bubble go?”
Silly Brendan
Once we find something that motivates Brendan, it is possible to get him to do his exercises. He did lots of nice reaching and propping today.
I decided to let Trevor try a little kiwi today for a snack. It was a very tart one, so I got the camera to see if he made a cute sour face.
Not even a flinch or a twitch! This kid likes his tart fruit!
Trevor doesn’t just wave goodbye when the therapist leaves, he gives her a “Live long and prosper”.
Brendan reached the peak of his silliness while I was getting his bath ready.
Getting the boys to bed was a huge relief. Brendan had his worst spell of the day tonight and Trevor was just frantic during the whole thing so we were ready to just explode.
Two peaceful sleeping boys and a long hot shower helped reset everything to tackle the next day.
I know it is hard and I only had one child at a time and no “issues” to go along with it, so I can only imagine what you go through daily. The boys both are doing so well and I enjoy reading your blog and seeing what mischief they get up to; lets me re-live my own boys babyhood. Sending lots of prayers and positive thoughts for Brendon that his GI issues simmer down again and he makes lots of progress with PT/OT.
Also sending lots of prayers and positive thoughts for Grandpa Dusty and Gramma, too!
Tiffanie I wish that I could wave a magic wand and send you days with no stress, a healthy Bredan and enough time and space to entertain Trevor. You are doing an amazing job of what is being asked of you to do. Tough times, but like you said “you do it for those two smiling adorable little boys of yours”. Being a mother is tough one baby at a time, much more with two. Sending positive thoughts and prayers your way for you, Bill, the boys and most especially for Grandpa Dusty and gramma.
Livvie just got over a terrible stomach virus that I guess is running rampant right now. Vomiting mixed with a bit of loose stools. Lasted six days. Hope he gets to feeling better soon.
I will pray that someone, somewhere, can answer the question “Why? is Brendan having these problems? ” , and that the cause can be fixed, so he can concentrate on growing up Happy, and Healthy.
😮 🙂 🙂 🙂 He needs to be strong, and ready for the * Twin Brother “Wars” 😮 * that seem to always be part of having the ‘same birthday’. 😉
Poor Brendan. That just sucks! Over the last 2-1/2 years, Ethan has needed a G-J tube replacement on average about 3 months. But some have certainly been problems earlier and will roll up or move suddenly. Two weeks ago we had a bad one cause a complete blockage without warning where formula was squirting out next to the button like a fire hose. Usually we’ll get a couple weeks notice with leakage increasing until it’s unmanagable. It always comes along with really bad wretching (he can’t really barf anymore with the fundo). I always hate that answer from GI. They can be awesome but, they just don’t get it sometimes.