Sometimes This Life Just Sucks…

A lot has happened recently, I am going to catch you up on everything Tubie and hopefully later this week find time to catch you up on Tutu. In September, Tubie got more tubes. This time in her ears. She was seen in August with hearing loss and in September, ENT went in and found her ears pretty plugged up. After cleaning out her ears and putting in tubes, she had almost perfect hearing!!!

Hanging out at the Ronald McDonald House.
Getting ready to get tubes.
Anesthesia was running behind so Tubie put herself to sleep.
Post surgery. We hung out at the hospital for the night.
She loves watching movies at the hospital.

About 3 weeks ago, Tubie started crying almost anytime her tube was touched. After a quick call to her complex care pediatrician, I took her to urgent care.

This is what her tube looked like when I took her into UC

The doctor at urgent care was very unhelpful. I don’t think it helped that we had to sit there for over 3 hours and Tubie was falling asleep. Luckily we had a GI appointment that week. Her GI doctor thought she had an ulcer in the stoma (gtube track) so we started treating it with medication to help. A week later and there was no improvement. We changed her to a longer button. And gave it another week.

New tube size. Still in pain.

After a week with a new tube size and treating her 2-5 times a day, she was still in pain. We went back and made the decision to do a scope. While waiting for the scope we had some fun with Tutu and went on a field trip. Where they had a handicap accessible wagon and Tubie got to enjoy herself.

On sissy’s field trip.

Bright and early the next morning(ok it was just early, the sun definitely was not up) we were at the hospital for her scope.

Despite loving to wake us up, she is not a morning person.
Before her scope.

The doctor came out after she was done and she has a bad ulcer in the stoma track. It is full of puss and very red. The doctor does not know why the medication we had been using hadn’t worked yet.

She was completely ignoring after her scope.

Being the amazing doctor he is, he had us continue doing what we were doing to try and help some while he worked on a better plan. It has been a week and he has been in touch every weekday trying to figure out the best course of action. Not wanting to do something that could cause more harm then good. In the meantime, we switched Tubie’s button type from a Mic-key to a Mini. This button has a different ballon shape, is lighter and has a lower profile. While it won’t help with the current ulcer, I think overall it will be a better fit for her.

The left is her old button, right is her new one.

Old button.
New button.

Today I realized how much all of this sucks. Tubie is in a lot of pain. And it makes me want to cry and the worst part is the only way we have at this moment to try and make it even a little better is to hold her down(Tutu is way better at helping then any 4 year old should be) or basically tie her down(I don’t always have help) in order to do what is best. I know while it hurt she is more pissed off she can’t stop me from holding her down to do it. I know that even if she doesn’t actually understand, I am doing what is best. But I also know that sometimes this life just sucks.

This is how I have to keep her hands and feet away while I do her tube meds.
She knows how to break my heart.

I am going to end this blog on a positive note though. Look at Tubie sitting in the shopping cart. 💓💜💓💜 She was so excited she kept shaking her head so getting a good picture was impossible.

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