Eyes, Tubey & Medications, oh my

 

Optometrist

Annabelle’s eye sight looks good, as does her overall eye health which is a huge relief. The appointment lasted a few hours and both girls had their eyes dilated, which was difficult for them both and us as we continuously calmed down their panic because their vision was blurred. Madelynne was upset that she couldn’t color within the lines and Annabelle fell out of her chair and onto the floor twice. We prayed the time would pass quickly and we could leave, before we knew it we were called back to see the doctor. She noted some slow/lazy blood flow within Annabelle’s eyes but nothing that should cause us concern right now. She does have some signs of being farsighted but at this point, we are just going to monitor it unless something changes.  We will continue visiting yearly due to her diagnosis, nutrition and mostly the seizures and neurological components that are associated with her general health. But for now, we are very pleased! 

I love how the doctor was asking her, "What shape is on the screen?" and if Belle didn't know, she would respond by whispering, "something".  funny kid!

Surgeon / G-Tube Check-up

Our appointment was shuffled multiple times, something was going on at the hospital and we kept getting bumped from our appointment time. We arrived  15 minutes early and by the time we were seated in waiting, we were told the doctor was running about an hour and a half late seeing patients. At this point I looked to my left and counted all my blessings that we had our nurse with us. My nerves were fried from the anticipation of this appointment.

I told Annabelle on the way to the hospital, “Sweetheart, we are going to the doctors today.” She asked why, “The doctor is really nice and going to look at your tubey..” this is about the time she started to panic and negotiate with me that her tubey is fine and no one needs to see it. I didn’t want the surprise to come when we got in the hospital room. I don’t like ‘surprising’ Annabelle anymore.. I don’t think it’s fair or helpful to her nor myself. Then again, I’m not a child psychologist either. But I am a mom, and I do know my child like she’s the second part of myself. I have been the only person beside her for each and every single procedure she’s ever endured. And I have come to the realization; Annabelle is smart. She’s wise beyond her years about the medical world. She is beginning to understand far more than I thought possible about her body and disease. She has owned her g-tube. I promise to stay honest with Annabelle when she asks even the most difficult questions, even if it means my heart crumbles to say the words, I will not lie. The conversation though, is still difficult. For both of us it’s hard. I HATE telling her what is about to happen just as much as I hate seeing it happen or her hearing it’s going to happen. But the amount of questions and understanding she takes from our conversation is priceless to the journey Annabelle is on. She knows that no matter the amount of pleading and begging, that I do not have the ability to say no to a planned appointment or procedure, so she doesn’t test me or expect that from me (thank God).

I asked her if she remembers the last time we changed her tube, and she did. She reminded me that mommy hurt her tubey and it got stuck. I told her the doctor today will change her button out and we will get a new one. She can carry our new box and button to the doctors office and give it to the doctor if she would like. I explained that the doctor needs to see her belly and check to make sure everything looks adorable. She asked multiple questions like, “Is she going to hurt me?” I told her, “I don’t know. It may hurt, or it may not hurt at all. But it isn’t scary, I will tell you everything she is doing, ok”. She wanted to know if she was going to get another glow in the dark tubey, and I promised, “Yes mam! You sure are! and then you can show sissy what it looks like in the dark!”

My mom met us outside the hospital when we arrived and walked with us to the appointment. The nurse and I waited with Annabelle and talked about Christmas and all things festive until they called us back.

Annabelle was nervous, clearly, but she was happy to see our doctor. She talked about her Tubey buddy, Ryan and told the doctor what she wanted for Christmas. The doctor and I talked for a long time about the persistent coughing and choking going on – we considered many plausible explanations and she directed me to a clinic in Richmond that is now seeing EoE patients, maybe they can provide some insight to whats going on as well.

Finally it was time to change the tube. It went great. The doctor actually applied numbing cream to her gtube area and we spun the tube a bit to numb the stoma well before removing her tube. Of course Annabelle cried and fought us all holding her down, but I don’t believe it was nearly as painful or traumatizing it could have been. As soon as it was all over, Annabelle sat up and was fine. She was proud of her new button and told us all that it didn’t hurt (despite the shaky breathing and hiccups from crying). We will be ordering a new size though, Annabelle’s tummy has thinned out and isn’t as thick (chunky) as she used to be, therefore her tube is too loose unfortunately. Hopefully that will be shipped soon.

I didn’t leave the hospital until nearly dark and Annabelle fell asleep immediately upon getting in the car. She was exhausted from the day. That evening was beautiful in Richmond and we decided to all have dinner on the patio as a family for (likely) the last meal outside of the winter before the cold comes in. The girls love eating outside and we all love spending as much time outdoors as we can.

While the beginning of the week started off well, the ending of the week began heading downhill for Annabelle. The coughing and choking is getting progressively worse. AK and I are not sleeping much at all anymore because Annabelle cannot rest if laying down. At this point, she cannot even take a tube feeding without choking.. a SLOW feeding at that. I was done by Friday and finally called our pediatrician and pleaded for help over the phone. I didn’t know what else to do because we’re not getting the help or direction that we need from any of our other specialists. After she did some research, she learned that one of the MANY side effects of prolonged use of steroids, is acid-mucus induced reflux. I begged to come off the prednisone but don’t have a clue how to begin to do so. We came up with a great game plan and began transitioning Annabelle off swallowed steroids and onto inhaled steroids Saturday.

 

She is taking Albuterol and Pulmicort, inhaled via nebulizer around the clock now. 

She doesn't like the nebulizer at all, and considering she is using it at least every 4 hours ..... mind you, medications multiple times x day, G-tube feeding tethered to her IV pole / pump every 3 hours for 1hr duration, and now breathing treatments.. she is NOT interested! :(

Saturday night, she slept for hours for the first time in months without coughing. I was so happy for her (and us too!). The coughing is still moderately present but getting better. Her appetite isn’t picking up much and she has been extremely tired and exhausted, but fights sleep. (The evilness of steroid use). Our fingers are crossed this treatment plan will help address these acute issues and Annabelle can begin getting adequate rest soon.

Upcoming

We see the GI doctor and a Dietician soon to discuss introducing a food into her diet and setup a plan for scoping (endoscopies / biopsy's) after every 2 foods. We are also working fast and furious into getting Belle to a Rare Disease Clinic… everything is a Hurry Up and Wait game, but we are trying to be patient.