October 11, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

Friends, I need your emergency prayers. We are headed back to PICU after two episodes of respiratory distress.

Yesterday seemed to be a good day, but took a turn later in the evening.

Last night around 9:00pm, Annadelle developed a slight cough- the same cough she had when we were admitted to the ED shortly before she went into respiratory distress. Chris told several hospital employees (her nurse, the charge nurse, two doctors (residents), and the respiratory therapist) about this cough and explained that when we were admitted to the ED, the RT had to do nasal suction to get it under control.

At this point, the RT was not aware that Annadelle had transverse myelitis and kept asking her to cough. The problem was that her chest muscles simply aren’t strong enough to cough. After only a few minutes, her 02 began to drop rapidly until it reached 84 (which was lower than the initial distress in the ED).

The RT began to attempt nasal suction, but was not forcing the tube very far in. This only irritated her nose and caused it to bleed a little. The RT attempted this several times before leaving the room.

The RT left us in the room without a nurse or other hospital personnel for about 10 minutes as Annadelle struggled to breathe. She was panicking and crying, scared she couldn’t breathe, so I grabbed the nasal canula and turned her on the side with Chris compressing her chest to attempt to expel the mucus. I used a suction device that was in the room and was able to get most of it out.

By the time the RT returned with her supervisor, Chris and I had gotten most of the mucus out. We could still hear a rattle, so we requested the supervisor try nasal suction one more time. He did and was able to get it all out. Within a few minutes, she was back to 97-98 oxygen and was leaning up playing with PlayDoh.

About an hour later, the cough started again. Once again the same RT came in and attempted nasal suction several more times with no success. The RT seemed to panic as Annadelle’s oxygen dropped lower and lower. The nurse, charge nurse, and one of the residents came in and stood and watched. They said nothing. I finally asked that we be transferred back to PICU which seemed to upset the doctor, but he called the attending in the PICU and got the okay to transfer us back. We are now back in the PICU and it appears we will be here for at least another week.

The resident in the PICU last night, Dr. Fox, informed us that Annadelle now had rhinovirus (a cold), and an x-ray revealed some buildup in her right lung. He decided to give her an antibiotic treatment for that, treating it as pneumonia, and would discuss further action with the attending today.

Thank God today’s attending is Dr. Vidal, our favorite doc in the PICU. She explains everything in an easy to understand fashion, and she said she believes this is only a minor setback. She said they see kids all the time in here with the rhinovirus that have to be put on a ventilator, even without transverse myelitis, so to see Annadelle only have to have high flow oxygen throughout the night was a good sign. Her movements also seem to be improving, so Dr. Vidal sees this as just a hump in the road. Of course, my mamma brain can’t stop worrying. Chris and I hardly slept last night, especially with my phone ringing constantly at 3:00 am for updates on Annadelle.

Chris and I have requested we stay in PICU until the rhinovirus runs its course. It is up to her body to fight off the virus, but because of her compromised condition it may take a while. Her little body not only has to fight to heal from the TM, but also fight to breathe and fight off the virus. They have once again placed us on contact precautions.

On a side note, Dr. Estrada (infectious disease) came to talk to us this morning about Acute Flaccid Myelitis. Several of my friends have sent me info on AFM even after I explained the doctors here do not believe Annadelle has it. Dr. Estrada still does not believe it is AFM, but told me the CDC has now ordered them to send any cases that present similar symptoms as AFM. He told us so that we would not panic in the event we received a call from the CDC to gather more information. NO MATTER IF SHE DOES HAVE AFM, THE TREATMENT IS EXACTLY THE SAME AS TM.

Chris and I are both exhausted from worry and would appreciate some extra prayers for our sweet girl tonight. We felt like we were sort of out of the woods and are fighting hard to stay in the faith that God will pull our baby girl through. I would give anything to be getting her ready for school tomorrow, just as our days had been before this. I am ready for a resolution and praying for more patience than I deserve.

Our first day back in the PICU has been much better than last night.

Annadelle has spent most of the day watching her iPad or TV, playing with PlayDoh, or playing with some toy instruments we got her from Child Life today.

Daddy and I have figured out that we can bribe her into doing the PT or OT exercises. Just give her a dollar for every PT tasks she completes and she’ll be a happy camper. She wasn’t happy when we had her sit on the side of the bed with legs hanging off for 60 seconds, but she was a trooper and did it with only minimal complaining.

She has also been eating a lot today including half a (small) box of cheese fries from the cafeteria, some broccoli, a peach slice, 4 bites of a dinner roll, and some jello. That’s waaayyyy more than what she has eaten since we have been here (and almost as little as what she normally eats at home). Her swallowing has also been a lot better today.

Dr. Vidal and Dr. Merritt (our faves!) listened to our concerns about how RT was handled last night, so they each informed the RT supervisor about the problems we experienced. The RT supervisor came around to speak with us and agreed that the situation should have been handled much differently. She also told us how to activate the SAMMY alarm if we feel her condition has changed significantly. This is basically a rapid response call that brings all available staff (including supervisors) to your room to assess the situation. She told us to activate it if we have another situation like that happen.

Chris and I requested Dr. Vidal keep her in the PICU for an extended period of time until the enterovirus runs its course. We feel much more comfortable with the staff here in the PICU than on the floor when it comes to her breathing. Plus, she is continuously being monitored here in the PICU, so it allows us to sleep a little bit. However, both of us are completely mentally and physically exhausted at this point.

As usual, thank you for all of the continued support. I am sorry if I have not gotten back to several messages. I am doing it as fast as I can.

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