Wednesday, January 14, 2015

Upper Endoscopy


430am is what time Annabelle began our day. She woke up crying for milk. AK went to her bedroom and tucked her back into bed as he told her she couldn't have any milk and she couldn't have a cup.. well, that didn’t go over very well. She cried to herself in her room for nearly 30min before we finally went back, picked her up and brought her to our bedroom. She was just so tired, she should have fallen back to sleep but she was upset. 
Her stomach is never empty, she is fed around the clock. Annabelle doesn’t understand the sensation of feeling ‘hungry’ and she apparently didn’t like it. We turned SuperWhy on the TV and got dressed and ready for the day.

Our nurse arrived early in the morning and Mady woke much earlier than she typically does as well.. she was so worried about her sissy, she wanted to give her a kiss goodbye. Annabelle said bye-bye to her sissy and daddy and we left. Our nurse, Ms. Pat, Annabelle and I headed to the hospital once again. (Daddy needed to work)

The Endoscopy Unit was empty! We were the second to arrive for the morning which was wonderful. Shortly after we registered and decked out with hospital bracelets, they took us back. Annabelle leading the way thru the big doors and down the sterile white hallway.. skipping to her own song as she hummed a little beat (probably ‘Let it Go’ from Frozen..) The nurse asked if she was clueless about what was about to happen. I laughed a little and said, ‘Actually, no. She knows exactly what’s going to happen… we’ve done this 7 times. It isn’t new for us. Fortunately though, she’s in a great mood today. That or she is just so tired, she’s delusional. Either is fine with me’


The Doctors and Anesthesia team all checked in with us, nurses made their rounds, everyone confirmed her birthday, allergies, and procedure a hundred times – I answered as many questions as quickly, efficiently and without detail as I could. “Does Annabelle have anything abnormal about her medical history?” – Dear God is THAT a loaded question! As I answered their concerns, Annabelle snuggled up to Ms. Pat; they played games, watched little videos and made faces at one another. Oh, the blessing to have another set of hands and distraction for Belle during things like this is absolutely priceless!


Finally came the anesthesia conversation. They asked if she’s ever had any issues with anesthesia before. I said, ‘yes’, she had a small issue with Propofol a year and a half ago during an EEG. I understand it’s a completely different procedure and use of the drug, but I mentioned it. When they attempted to sedate Annabelle for the EEG, they used so much propofol that the anesthesiologist got nervous, Annabelle never fully went under and they finally called off the procedure bc it was becoming unsafe.


Here’s the video of that EEG and their attempts to get her under:



The doctor clearly wanted to use propofol for the Endoscopy this time but I was hesitant. To be honest, I really don’t like the cocktail we’ve been using (gas sedation + breathing tube while she’s under) but I had reservations about making any changes. I’ve said it a million times, I HATE ANESTHESIA!!!!! I am ALWAYS terrified that I will never see my baby awake again after she’s been put under. I know the chances are so low, I understand the doctors are brilliant at what they do, but you can only be lucky and fortunate but so many times. It's just one of my biggest fears and I don't think I'll ever shake it. Annabelle is constantly under anesthesia and never, not one time have I felt comfortable with it. To ask me to change everything we’ve done in the past and try something new? EEK!


I asked many questions and made sure I was clear on what they would be doing and how they would be administering the drugs. I confirmed twice that they had her weight correct on their charts and then I squeezed my baby girl a little tighter.


Before we knew it, the nurse was ready to take her back to the OR. Annabelle gave Ms. Pat and I both a kiss and we told her we would see her very soon. They unlocked the brakes on the bed and off she went. Stopping at the nurses desk for a few stickers and around the corner at the end of the hallway, we watched as Annabelle pointed to which way she wanted to go. I stood 10ft tall at my confident, brave little girl. We gathered our things and texted AK “She’s been taken back.. and now, we wait”


Pat and I grabbed a quick breakfast and coffee and sat back down in the waiting room. I made Belle’s sippy cup of milk, gathered her tubing to make ‘bubbles’ and checked the time over and over. Finally, I heard the best words, “Family for Bishop – is the family for BISHOP here?” We rushed the nurse threw the doors and I impatiently led the way towards my baby girl. I could see her bed and her little pediatric jammies at the end of the hallway, the nurse chuckled “She’s perfectly fine mom. She’s not awake yet but she did great.”
Yea, I don't care.... I need my baby!


To my complete shock, Annabelle was truly still asleep! I’ve never seen her come out of ANY anesthesia this way before. Every time she's waking from anesthesia, she's hysterical, inconsolable, crying, disoriented, scared.. never have I seen her sleeping.

I watched my Annabelle snoozing. She was so quiet. I listened to the beeping of the machines she was connected to.

I watched her even more and checked the time..... it's been 10minutes.. ok, so when is she going to start waking up?

The Doctor finally comes to see us, her head drops and I know what she's going to say. She starts by telling me how well Annabelle did during the procedure and explained that her Nissen was intact. The nissen is not tight, but it's still secure and the muscle is in the right positioning for where we want it to be. She told us the G-tube looks excellent from the inside.

I waited for the news, and then it came.
"Annabelle appears to have active eosinophils in her esophagus. There were multiple white plaques, longitudinal furrows, esophageal rings etc all along her esophagus. I'm really sorry. 

We discussed a preliminary guess as to what caused the relapse (beside the obvious, her new foods.) there is also the possibility that Annabelle could be reacting to something environmental. 

Once I heard the news that we came to find out, I was finished discussing it. My attention turned back onto Annabelle. She was still asleep and it's been almost 20 minutes.
The doctor and I agreed to wait for the biopsy results from pathology before making any decisions as to what we need to do. Until then, I just don't want to talk about it.
Sigh


Annabelle finally opened her eyes. She looked around and went back to sleep. The next time she opened her eyes, the first thing she recognized was the IV in her hand. Typically, that is what she dwells on - getting the IV out of her hand. This time, she didn't care. She looked at her other hand and smiled. Apparently during the procedure, the nurse or someone put a sticker on her hand. She was very pleased to see that. 

I asked for some juice and she drank a little. Very slowly she was waking up. I kept telling the nurse how impressed I was at Annabelle this time. Finally, the doctor came in to check on her. She was the same doctor that talked me into trying a new method of anesthesia. I thanked her profusely and asked that she reflect whatever she needs, in Annabelle's chart that we repeat this same plan the next time we're here. It was flawless. Albeit a little nerve wracking that it took over 20m for her to wake up. But once she did, she was so calm, happy and comfortable. Not one tear was shed the entire morning. We couldn't have asked for anything more out of the staff and Annabelle. 


Once we were home; I emailed madys teacher for her to tell mady that her sister was 'ok' and at home (she's been so worried lately and I knew she would be distracted at school until she got the news). Annabelle made herself comfy on the couch with her favorite pillow and blanket. I hooked her Tubey to make bubbles to help rid some of the excess gas off her stomach from the procedure. She had a lot of bleeding from the biopsys they took. Maybe they took more than the usual? I typically see a small amount of old blood here and there during her feeds, but I've never seen this much. By the late evening it had slowed down and appeared to be healing (old blood vs bright red).

As our nurse snuggled Annabelle to try to get her to rest, I decided to exhale and join AK for lunch. After all, the day started at 430am and everyone was just exhausted. Annabelle got plenty rest during the day and Madelynne was beyond thrilled to finally see her sissy that evening. They played more Uno, laughed and Annabelle told Mady what she did that day. The conversations were priceless. 

As bedtime approached and everyone was being tucked in, AK and I couldn't help but stand back and reflect on the day we've had. Each struggle comes with a blessing. Each bump in the road is a sign that were at least still on the road. Despite daily frustrations, we are completely blessed to be in this life with these two amazing little girls. Our hearts are in our throat about the biopsy's but we're trying hard not to think about them until they're back. We know the news is bad, we just don't know quite how bad it will be. Our prayers are that the results will be within a range we can work with. But our primary focus is this little family we have surrounding us. The warm home we have while the temperatures outside drop. And the delicious snacks in the fridge that we can devour when the kids fall asleep ;) 














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