Blake’s Health Journey!

In early June 2019, Blake started to have a lot of sleeping issues. She never has been the best sleeper, but this time it was different.

She wouldn’t wake up for a long period of time like she used to. She would just wake up very frequently. She would wheeze and snore in her sleep and gasp for air. So scary. Throughout the day she was just very delirious and out of it. Also, she wouldn’t take any naps.

I took her to her PCP early June where they diagnosed her with sleep apnea and referred her to a neurologist. We finally saw the neurologist in August where she recommended Blake have A forty-eight hour EEG test to rule out seizures.

That test was a hard one. She had to stay upstairs for the full two days so that way the cameras they set up would stay connected to her wires on her head. She also had to carry around the backpack with the heavy box in it the whole time.

Luckily no seizures!! Thank you, Jesus!!!!

We then visited a sleep pathologist in late August, where she told us her tonsils and adenoids would need to be taken out. For that to happen though, an ear nose and throat doctor would have to sign off on it. The sleep pathologist was very confident that Blake wouldn’t even need a sleep study and that the ear nose and throat doctor would sign off on the surgery.

We got in to see the ENT at the end of September. She said that neither her tonsils nor her adenoids were big and that she would need a sleep study to see exactly why she’s not sleeping.

(When they refer you for a sleep study you’re not supposed to call them, they have two weeks to call you.)

I was good and I waited the full two weeks, but no call.

When I called them they proceeded to tell me that they never received a referral from her ENT. I called the ENT’s office and they never submitted the referral. It was sitting on the nurse’s desk the whole time. 

When I finally got back in touch with Dell Children’s sleep center the next available appointment was December twelfth. As frustrating as it was that they weren’t able to move anything up at all. I found a sleep center in Cedar Park that had an opening on November fifth! I was so grateful that we were able to go there instead.

When we showed up she was excited because she just thought she was having a sleepover. About twenty minutes later the nurse came in to hook her up to everything and that’s when it went downhill. 

She was not happy with me. I got her to sleep by making up a bedtime story about a Christmas Elf! Her oxygen and monitor on her finger kept coming off so the nurse came in about every thirty minutes to try and put it back on. Blake woke up about fifteen times.

Five thirty could not have come quicker and we were both very happy to get out of there! Now, all we could do was wait for the results!

I took her in to see her PCP on Thursday the fourteenth because I thought she had a UTI.

They tested her and they said that they wouldn’t know for sure till Monday, but they prescribed antibiotics anyway.

At her appointment, she didn’t have a fever, but later in the day, her fever went from 100.8-103.4 in two hours. I took her to urgent care where they tested her for flu and strep (both negative) and wanted to test her pee again. She must have drank three bottles of water and still wouldn’t pee for them. The poor girl was falling asleep on the toilet. They finally told me they’d have to give her a catheter to eliminate a UTI.

THE SADDEST THING IVE EVER HAD TO WATCH!!!!! They had to swaddle her in the sheets as she kicked and screamed. They got the results and said she didn’t have a UTI. 

The ER doctor came in and said: “I think she has tonsillitis because her throat is red and swollen and has white spots” which made sense because of her sleeping issues. So he gave her a steroid to see if it would help by the following day. The next day we go to her PCP and she told me that they hadn’t got the results from the UTI but to start on the antibiotics anyways. Which in my head I was like well what else could be causing the symptoms so might as well. She also tested her for flu and strep AGAIN even though I told them urgent care did and they were negative. 

And guess what? They came back negative at her PCP’s office as well. Her doctor very quickly wrote off tonsillitis and wasn’t at all concerned about it.

They called me on Monday after Blake being on antibiotics for THREE DAYS and said that she never had a UTI and that I can stop giving it to her. I was filling her body with horrible things for absolutely no reason.

In between her sleep study and waiting for the results, Blake had a neurologist follow up. The neurologist recommended that Blake have a hearing test and speech therapy.

She tends to stutter and isn’t able to pronounce things very effectively so I am so thankful we will have that help! 

The hearing test is to make sure her pronunciation isn’t being caused because she can’t hear us. 

I waited and waited for the results and finally heard from the ENT on November 22nd. 

When I answered the phone she said “hello yes I reviewed Blake’s sleep study and her airway is very obstructed while she’s sleeping. She needs her tonsils and adenoids out.”

Which praise the Lord was awesome news, because of ANSWERS!!!!  

Surgery is scheduled for January twenty-ninth!