November 21, 2018

Chris and I are very impressed with Children’s of Alabama so far. It appears that all of the staff members communicate well, are educated about her care, and take the time to listen to questions and answer them properly.

Not only that, but every staff member we have come in contact with- whether it be in the hallway, the cafeteria, on the elevators, you name it- are extremely polite! They smile at you, hold doors open for you, and seem to genuinely care that if you are here it is because you are going through something difficult with your child. It’s hard to express how much of a difference kindness and compassion makes in your child’s care. I wish I could find the words to say exactly how much this means to us.

Annadelle is scheduled to have a swallow study done at 2:00pm today. It is to test to see how well her muscles in her throat are working. She has had some trouble periodically drinking thin liquids but she seems to be doing much better about it. She does not have a problem eating a regular diet, except for the fact she is so picky. Getting this child to eat something good for her is close to impossible.

Speech came in to evaluate her language skills and determined she fell within the normal range. If her swallow study is good, we were told she will not require a lot of speech therapy. They will probably just peek their heads in to check on her every so often to make sure she is still doing well. They want to be able to keep the focus on PT and OT if she doesn’t need speech anymore.

The neurology resident and medical student came in to evaluate Annadelle this morning. They seemed to focus a lot on her “flaccid” status. It seemed that they were really trying to determine whether she has Transverse Myelitis or Acute Flaccid Myelitis. The notes from USACW refer to her condition as both, although the doctors there told us they disagreed with the diagnosis of AFM due to the fact she is recovering so well. The CDC has “confirmed” her case as AFM, but we did not receive an explanation as to why or what the factors were to determine a new diagnosis. Dr. Ness will be coming in to speak to us and evaluate her and I’m assuming we will go with whatever diagnosis she thinks fits the best. She has already laid eyes on Annadelle’s scans while we were at USACW when we requested Dr. Sanchez contact her. She told him she agreed with the diagnosis of TM, so I’m curious to hear what she says now that she has recovered a lot more than when Dr. Sanchez was administering her care.

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I also spoke to the schoolteacher here about getting her started on bedside instruction. She is going to reach out to Annadelle’s school after the holiday week and go from there.


5:30pm

We have had a busy, busy day. I know Annadelle has to be tired because I am wore slap out! PT Anne Claire taught us how to transfer Annadelle from the bed to the wheelchair and had us practice it several times. We can no longer just pick her up and transfer her; we have to have her scoot forward, plant her feet, stand up, pivot, and scoot back. It is really time-consuming and exhausting for all parties but it is exactly the therapy she needs. PT Anne Claire was tough on her but was super sweet, so I think Annadelle will grow to love her and we will see major improvements.

Speaking of improvements, we noticed Annadelle using her left arm a lot more today. That is the arm that was completely limp from the beginning. Not only is she moving her wrists, performing supination and pronation, but now she is bending the arm at the elbow to touch her face. She can do it when someone supports her elbow, but can’t quite do it without assistance yet.

She also had a swallow study completed today and “passed” with flying colors. The speech therapist told us that she can be on a regular diet and ST will only peek in to check on her periodically rather than come in to see her for an hour each day. Her speech and language abilities are at a normal capacity now.

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Annadelle waiting on the speech pathologist to arrive for her swallow study

OT Holly made mention that she will start us on e-stim on Monday after the holiday week when the schedule is better. We won’t have any OT or PT tomorrow with it being Thanksgiving. We are really sad we have to spend Thanksgiving in the hospital. It was tough missing Halloween, but it is even worse missing Thanksgiving. Luckily for us we have so much to be thankful for, so we won’t complain about the many blessings God has given us over these last few months. We are blessed beyond measure to still have our baby girl with us seeing some rapid recovery!

We had a chance to speak personally to Dr. Jayne Ness today. We could tell she was brilliant because she was really all over the place with conversation. At one point I thought she was talking to herself, like talking out loud having a conversation with herself about AFM but soon realized she was talking to me. It was obvious she is very knowledgeable about AFM and, moreover, very curious and inquisitive about what causes it and how to treat it. She was very “matter of fact,” something we admired abut Dr. Maertens at USACW. No sugar-coating going on here, and that’s honestly something we appreciate when it comes to what to expect with our child.

Dr. Sanchez from USACW had consulted with Dr. Ness about Annadelle’s case while she was intubated. We were told Dr. Ness agreed with the TM diagnosis, but she told us today she is sure Annadelle has Acute Flaccid Myelitis (AFM) as the Centers for Disease Control (CDC) had confirmed less than two weeks ago. Unlike our other doctors, she explained that AFM cannot be confirmed through an MRI alone, but rather through clinical examination. Based on the way her symptoms presented and the fact that she has no reflexes, is noodle-like in her extremities, and a few other things she mentioned that I honestly can’t remember, she said her case was “classic” AFM.

Here’s the kicker, though: Even with Dr. Ness being considered an expert in diseases of this type, having been consulted by doctors all across the country, even she said she doesn’t know much about the disease…because no one does. She said she had always wanted to study polio from the 1920’s and 30’s and that she didn’t realize that, in essence, she already is. AFM is the modern-day polio, likely derived from a different strain of enterovirus. I heard a rumor that the CDC has confirmed enterovirus D68 as the definite cause of AFM, but I have yet to find any documentation or sources supporting that claim, so who knows. Annadelle’s labs were negative for enterovirus upon admission on October 1. She did not test positive for enterovirus until after the incubation period. It’s a mystery.

One thing Dr. Ness did say is that Annadelle has shown rapid progress compared to other children with AFM. Typically it takes months or years to gain back some of the mobility she has. I can tell you beyond a shadow of a doubt that is a result of countless prayers and healing from God. Period.


What about visitors?

I have had several friends and family members ask about visiting Annadelle, so I wanted to go ahead and talk about it a second.

Visiting hours are from 9am to 9pm daily. Visitors must check in at the visitors desk on the 2nd floor of Children’s Hospital off 7th Ave. Children under the age of 12 are not admitted onto the floors under any circumstance due to cold and flu seasonThis is for the protection of all patients, obviously.

Visitors with children under the age can visit and gather in a common area such as a lobby, cafeteria, or a place here called Children’s Harbor. Children’s Harbor will not be open the remainder of the week but will reopen on Monday.

Annadelle will have aggressive PT and OT twice a day that requires her to leave the room and go to the PT gym. Chris and I are encouraged to go with her to sessions. Her team (and I mean a TEAM of doctors) will round on her each morning and pop in throughout the day. When we asked about the best time for visitors, we were told it would be best to wait until after 4:00pm each day to allow for all of the doctors to round and for her to finish with her therapy.

If you would like to visit, that is fine, but I cannot stress enough that if you exhibit ANY symptoms of a cold or the flu, do not come to the hospitalAs a general rule of thumb, you should not visit the hospital if you have any of these symptoms:

  • have or have had a fever in the last 24 hours
  • have a runny nose
  • have a cough
  • have a sore throat
  • been exposed to anyone with flu-like symptoms

The last time Annadelle came down with a cold, it almost killed her, so I beg you if you are showing any cold or flu symptoms or have recently experienced any symptoms please do not come to visit.

Annadelle has her iPad and she can easily FaceTime for talk to Android users through Google Duo, so feel free to call us if you are unable to visit. You can also leave her a video message of encouragement through Facebook Messenger.

Thank you to everyone for your continued support. I will continue to update on her progress but unfortunately I cannot take any photos or videos of her work in the PT gym due to HIPAA regulations. Stay tuned!

 

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