Man, it has been a busy couple of weeks. Let’s see, last time I posted on her blog, we were still inpatient. We had endured our first night in the hospital.

My’isha did extremely well with the MIBG infusion. She had pretty much no side effects outside of the radiation she had beaming out of her and in being released in her bodily fluids.

The chemotherapy drug Vorinistat messed with her appetite and taste buds quit a bit and gave her an upset stomach. So we had vomiting issues with medications.

It was Friday night when things got really REAL.

My’isha went to fall asleep, and all of a sudden her oxygen levels dropped! Normally when you hear that beeping the hospital, its nothing. With her, she either pulled the pulse/ox off or is playing with her feet or something. This time, as I was walking out to get gowned up to check on her, other nurses were on their way to come in.

We opened the big lead door between our room and her radioactive room. I yelled her name… nothing. Her daddy yelled her name… nothing. At this point, I am getting ready nurses are getting ready to get in the room. Her daddy is yelling her name…. nothing. I rushed in the room and sat her up and rubbed her back and she stirred. She opened her eyes upset that we had woke her up.

She wanted to lay back down. I let her lay down, all eyes on her and the monitors….. and she de-stated again. Again, difficult to wake her. At this point, I am in life saving mode, emotions off, just logical thinking switch on. Daddy is doing the daddy thing for us for now.

So what is going on, right?

We also had to rule out the risk of seizures. Due to My’isha’s rare genetic situation, she is at a higher risk of developing seizures and the treatment can cause seizures. We were able to rule that out rather quickly.

If you read the last post, I talked about the sedation cocktail we had My’isha on to keep her from pulling her tubes and to keep her pretty still in her crib. We needed her to be pretty chill through this time until her radiation levels were low enough to remove some of the montiors and tubes. She was on a drip of Ketamine, and around the clock Benadryl and atarax. So, it could have been either one of those or the combination of the 3 over aperiod or 3-4 days that was putting My’isha into a deep enough sleep to slow her breathing to almost stopping and making her difficult to arouse.

Talk about scary.

Once we stopped the sedation meds, the real mommy daddy work began. She had been pretty sleep for 4 days, so now… at 2am-6am she was wide awake. She was playing and pulling on tubes. She was back to normal My’isha. Which was a problem for her safety because she could pull a tube connected to a central line or the catheter in her ureter. Which meant more work for mommy and daddy… and nurses and doctors.

It was always awesome to see the doctor storm in our room saying, “DON’T PULL ON THAT MY’ISHA!” to the TV. It was GREAT! Especially when My’isha was only just trying to get a pretzel from the bottom of the bed she had picked up with her feet.

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It was hard to tell what she was doing sometimes. She seems to be coloring and watching TV here… but what are her feet doing?

We were lucky that the dose of MIBG she received was so low. It left her body fairly quickly and her radiation levels were low enough to where she posed minimal risk to us. So, with the sedation meds turned off and My’isha wide awake at 2am, our shifts began. Daddy took the first shift and I tried to get some rest in case there was another emergency. Which there was… she threw up. Let me just say this, weak-stomach daddy’s have no place in the vomit world! Although by the end of the following day, he was cleaning vomit like a champ!

It was around 6am when he was finally able to get her to sleep and lay down.

Meds were due at 8am, which meant it was my turn. He had to go back to work on Monday, on top all of the weekend’s excitement, so the nurses and I tried to let him get as much sleep as possible. However, with the paper towel dispenser going off everytime someone came in or out, and the radiation meter beeping like crazy when someone came  in or out, the big heavy door moving every couple of hours or more, and My’isha’s monitors going off if she moved her toes the wrong way…. it was still difficult to get any sleep.

Her radiation levels were low enough the following day to remove the catheter. So that was a relief.

She slept through the night and took a nap maintaining her oxygen levels, so we were able to remove some of the monitors too.

It seemed we were on the upswing. The only things keeping us inpatient had been removed.

Monday was scan day and release day.

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My’isha thinks she is ready to go. Although, she is only going down for scans and she is putting the shoe on the wrong foot.

Stay tuned for the next post where I talk more about the MIBG therapy and scan day and discharge 😉 Thank you for reading 🙂

 

 

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