ChloeWatts.com

Thursday, July 10th:

I’ve been sitting at home for over two hours now putting off this blog. I really wanted to be able to have an uplifting day, but reality is reality.

Chloe had a terrible day, as did Dana. The night wasn’t any fun either. They were both awake all night fighting nausea and fever. The tube came out again! It’s really getting to be like a lesson in insanity. You do the same thing over and over again expecting different results.

Well, that’s not exactly how it’s going but it’s close. How many times can you put a tube through her nose? Dana is varying the meds a bit, with the doctor’s coaching, to try different approaches for controlling the nausea.

Today was Dana and Grandma Lee’s turn to take Chloe to the doctor’s office. Dana lost her patience with the NP. Why is it that some in the medical profession have such big egos that they won’t listen to family and patients that have been going through things for weeks? This moron wouldn’t listen to Dana when she told HER (correction. thought it was a him when I wrote of this last night.) the weighted tubes wouldn’t work on Chloe. After trying both sides a couple times SHE consented to do what she said in the first place. It’s Chloe that suffers when they do things like that! And yes, I hope SHE reads this. iT WAS HER ATTITUDE THAT REALLY SET DANA OFF. WHEN DANA ASKED FOR A #8 TUBE TO BE USED THE NP SAID, WITH ATTITUDE, “WE’LL SEE WHAT WE HAVE ON HAND.” SHE WANTED IT HER WAY BECAUSE SHE IS THE PRO. SHE FOUND OUT SHE WAS WRONG AND I HOPE SHE LEARNED SOMETHING SO OTHER KIDS DON’T HAVE TO BE ABUSED BY HER EGO.

The CAT scan showed there might be fluid at the incision site but without another MRI, they can’t tell exactly how much. The guess is it’s not enough to drain again. I guess you could put that on the plus side. On the negative side is the fact that, if Chloe can’t keep the tube down this time, she will be back in the hospital. If that happens, and they need to feed her through her PIC line she could end up with a damaged liver.

Dana is planning to be awake all night again tonight to make sure the meds are on time or early. She bought a new $50 anti nausea medicine that they are trying. She is also able to dilute the liquid Tylenol so it can go down the tube. We need this to work!

This roller coaster is getting too scary for even someone who loves them. We are doing all we can to assure it stays on the track. It’s too close…

At one point in the day Chloe had her whole family support team there. Dave, Ramona, Grandma Lee, Colin, Ron and Dana were all there. Even then, our Chloe was too weak to participate in the conversations. In fact, when I showed her the guitar that Gary Sugal sent her from his heart, she gave a big smile but didn’t even want to lift her hand far enough to strum it once.

I am at a loss for words now. Some of the family is still able to find a laugh. I’m not one of them and Dana is far from one. Things just don’t feel good right now. Dana is lower than the other day I wrote about. I hope I’m able to give you some better news tomorrow. We need something big to happen! Very good, very big!