Honestly, considering where we started and how far we've come, I cannot complain about an ounce on how Annabelle is doing on this trip. She's handled painful procedures like a pro, the hospital has been very keen on addressing any anxieties she has and allowing us to make a lot of decisions for her. All things considered, things have run pretty smooth.
(For the record, I LOVE this kinda blog update :) )
The doctors and GI team made their rounds at 9am and we joined them for Annabelle's briefing on her case. I love how they do this. All the doctors on the floor, research team, specialists, and our nurse stand in the hallway outside of our room with their computers and we join in a circle. Our nurse then briefs the team on why we are here and how Annabelle is doing. The main doctor explains to the team what our plans are for Annabelle while she's on the floor and during surgery. They ask if we have any follow up questions or concerns and then they wrap up our case.
(Here's a random internet picture of what this looks like)
It's all open, we are intimately part of every detail of Annabelle's care, just the way it should be. After were finished, we go back into our room and shut our door for them to move onto the next patient.
The OR called for us shortly after 1p and transportation rolled us to pre-op. Annabelle began to get scared for the first time, she was breathing terribly heavy and had silent tears falling from her eyes.
We moved into the OR where about 15 people were standing around and waiting to begin. I feel like such a fish out of water when we go in here.. they're all staring and watching us silently as they work to organize their last things. I eye each and every one of them, trying to smile, but in my mind screaming "keep my baby safe. keep her alive. Take care of my baby. You. And you. And you. And you.." I can't help it, each and every one of them are accountable for my daughter from the time I am escorted out of that room. I don't know what their roles are in the OR, nor do I care, but my expectation is that they all keep her safe. each and every one of them.
.. .. .. Almost an hour later, I was covered in hives and wanted to vomit from nerves. She has never ever taken this long to wake up and them call us. Every worst case scenario was running thru my head and I just knew she was screaming hysterically in disoriented fear and I wasn't there (that's how she comes out of anesthesia 80% of the time). I demanded the rep at the front desk let me see her and/or speak to the nurse that's back there with her. I couldn't take it any longer. The nurse on the phone said to send us back, I bolted to the PACU, leaving AK in my dust. When I found her, she was still snoozing away, still had a breathing tube and on oxygen, she just didn't want to wake up yet. After about 5min she wiggled a bit so the nurse removed her tubes and set the oxygen to the side as we watched her for another 30min. She seemed to be slowly, very slowly, coming out of it.. But she was scaring the hell out of me. I couldn't touch her, hold her and I can hardly speak to her bc it's essential she wakes on her own and doesn't panic when her body can't wake as quickly as she wants to. We swallowed over our lack of patience and anxiety and watched our baby snooze... For what felt like a year! Finally, they called transportation and allowed her to finish coming out of anesthesia in our own room on the floor. I was relieved, at least if we're leaving PACU, that's a good sign..
Since our OR time wasn't scheduled until 1:55p, we spent most the morning being lazy, painting, doing arts and crafts, watching movies (we watched Matilda, because I got to pick the movie this time hehe).
The doctors and GI team made their rounds at 9am and we joined them for Annabelle's briefing on her case. I love how they do this. All the doctors on the floor, research team, specialists, and our nurse stand in the hallway outside of our room with their computers and we join in a circle. Our nurse then briefs the team on why we are here and how Annabelle is doing. The main doctor explains to the team what our plans are for Annabelle while she's on the floor and during surgery. They ask if we have any follow up questions or concerns and then they wrap up our case.
(Here's a random internet picture of what this looks like)
It's all open, we are intimately part of every detail of Annabelle's care, just the way it should be. After were finished, we go back into our room and shut our door for them to move onto the next patient.
"What's wrong sweetly?"
"I'm scared mommy, I don't want surgery anymore. I just want to go to our hotel, please."
She has been so brave until this point. And she still was, but she was nervous. Our room was no longer decorated beautifully with a Disney movie on the TV, instead, we were now in a holding cell with lots of monitors, beeping machines and teams of doctors, anesthesia and research specialists talking to us and surrounding Annabelle's bed. She had every right to be intimidated. We both gave her our cell phones, she played games, took selfies and even snapped pictures of mommy and daddy lol (excuse us, we look like hell)
Finally, Dr. Putnam made his way to see us, this was a relief to Annabelle, she loves Dr. Putnam and was so happy to see him. We quickly discussed our game plan and he noted that we were next in line for the OR and he would see us soon.
We moved into the OR where about 15 people were standing around and waiting to begin. I feel like such a fish out of water when we go in here.. they're all staring and watching us silently as they work to organize their last things. I eye each and every one of them, trying to smile, but in my mind screaming "keep my baby safe. keep her alive. Take care of my baby. You. And you. And you. And you.." I can't help it, each and every one of them are accountable for my daughter from the time I am escorted out of that room. I don't know what their roles are in the OR, nor do I care, but my expectation is that they all keep her safe. each and every one of them.
The anesthesia team (initially) followed my request to repeat the same procedure as we did last time for keeping her comfortable and asleep. They administered Versed and within 20-30 seconds, she was drunk.. Just the way I like to see :) this relaxes her so she isn't as anxious when they put her under and she wakes easier without panic. Next they gave her Propofol which usually does the trick without needing the gas to knock her out. Anytime I see Propofol though, I have flashbacks to when we attempted to use it for an EEG and she fought it with every dosage until it was too dangerous to continue so the anesthesia team ended the test bc she wasn't responding appropriately. It was terrifying and I wish I never witnessed it, it's scarred me. She wasn't even 2 yet and was so, so sick ...
This time though, when they gave her propofol, I watched and her eyes bolted open in a panic just like they did three years ago and my heart stopped. I didn't want her to fight or be scared, I immediately crouched down next to her and told her we were going to take a nap together, and she laid her head back down. I told her I love her so much and sweet dreams, she gave a half smile and closed her eyes. That's when the anesthesiologist put the gas mask over her face and we were escorted out.
This time though, when they gave her propofol, I watched and her eyes bolted open in a panic just like they did three years ago and my heart stopped. I didn't want her to fight or be scared, I immediately crouched down next to her and told her we were going to take a nap together, and she laid her head back down. I told her I love her so much and sweet dreams, she gave a half smile and closed her eyes. That's when the anesthesiologist put the gas mask over her face and we were escorted out.
This video shows right after she had versed and when they administered Propofol, I cut it off when I noticed they were giving the Propofol and she was trying to sit up..
We made our way to the waiting room and found our usual seats, right in front of the monitor that relays how Annabelle is progressing thru the OR. This was AKs first time being inside the OR when they put her under, we talked about it for a bit.. He didn't like what he saw, as a daddy, there are just a lot of parts of this medical process with Annabelle that he would prefer he never sees or knows about. The OR is intimidating, without a doubt, for parents as much as it is for the kids. I'm just grateful Annabelle has us both to balance the emotions of what she's going thru. I am much more medically aware and engaged, a fighting advocate for each and every decision and daddy is her hero that brings a bit of home to the hospital and makes her laugh and forget everything she's going thru. We wear two very different hats in how we provide her medical care and how we parent our kiddos, and I couldn't ask for a better co-pilot on this adventure.
....enough of that sappy stuff..
....enough of that sappy stuff..
About 45m later, we were called for a consultation, where they take you into this tiny room between the OR and waiting room and our nurse (Eosinophilic Esophaghitis specialist/ Putnams right hand man, err, lady) briefs you on what went on, updates her notes from us and we wait in silence until Putnam joins with pictures and an update on what he saw visually. She looks good from a visual standpoint, we need to wait for biopsies and he stressed that we need to have some conversations during our clinic visit on Thursday. We agreed, took our paperwork and went back to the waiting room where we wait until she's stable in the PACU and they call us to go see her.
.. .. .. Almost an hour later, I was covered in hives and wanted to vomit from nerves. She has never ever taken this long to wake up and them call us. Every worst case scenario was running thru my head and I just knew she was screaming hysterically in disoriented fear and I wasn't there (that's how she comes out of anesthesia 80% of the time). I demanded the rep at the front desk let me see her and/or speak to the nurse that's back there with her. I couldn't take it any longer. The nurse on the phone said to send us back, I bolted to the PACU, leaving AK in my dust. When I found her, she was still snoozing away, still had a breathing tube and on oxygen, she just didn't want to wake up yet. After about 5min she wiggled a bit so the nurse removed her tubes and set the oxygen to the side as we watched her for another 30min. She seemed to be slowly, very slowly, coming out of it.. But she was scaring the hell out of me. I couldn't touch her, hold her and I can hardly speak to her bc it's essential she wakes on her own and doesn't panic when her body can't wake as quickly as she wants to. We swallowed over our lack of patience and anxiety and watched our baby snooze... For what felt like a year! Finally, they called transportation and allowed her to finish coming out of anesthesia in our own room on the floor. I was relieved, at least if we're leaving PACU, that's a good sign..
When we got back to our room, daddy picked Annabelle from her stretcher and carried her back to her bed where we made her comfortable again. This little bit of movement did wake her a little more and soon she was opening her eyes for us. We both exhaled, loudly and smiled at one another. Whew, she's back!
I've mentioned it before, but anesthesia is one of my biggest fears, for myself, for my husband, for my babies. It isn't often people are put under, but in Annabelle's case, it is often. This was #23, and although I wish it wasn't in the back of my mind, I always think and say "how many times will we be lucky for everything to run smoothly? This may be the last time I see my baby awake and smiling at me, this may be the last time I hear her sweet little voice." Anesthesia is dangerous, there's no doubt about it and all our doctors remind us. We have to get to a point where she isn't going under all the time bc eventually there WILL be consequences to the repeated bouts of anesthesia.. I just wish we were already there. :(
We were discharged around 530-6pm, just in time to play in downtown Cincinnati traffic during a rainstorm. Annabelle was too tired to notice how long we were in the car.. She was still so groggy, which was probably a good thing. We arrived at Great Wolf Lodge around 7p and revealed her big surprise :) she was pleased, but couldn't grasp the amount of fun these few days would bring. The last time we bright Annabelle to Great Wolf, she was so sick and weak, we thought we were losing her.. Hospice was called a month later. She doesn't remember that trip at all, she never really got in the water, she just cried occasionally and slept 90% of the time. Here are some pics from that trip:
Mady remembers the trip though and remembers how much fun it was.. When she finds out where we took Annabelle, she's going to be FURIOUS! Lol
Mady remembers the trip though and remembers how much fun it was.. When she finds out where we took Annabelle, she's going to be FURIOUS! Lol
We didn't do anything fun open arrival, we had dinner where Annabelle couldn't eat much and then sat for story time, but she asked to leave within 5 min of the story beginning because she wanted to go to bed.
Tuesday she did play for a bit, but she is still incredibly weak. I can't gauge whether it's all because she couldn't eat for two days and then underwent another surgery or if she's tired because of all the running and swimming thru the water park. Nonetheless, she could only play for about an hour and a half and then couldn't walk or run much any longer and needed rest and some sleep. Her cough is getting pretty out of hand too so we're keeping a close eye on that.
No appointments Tuesday. Wednesday we report at a satellite location for a sleep study.. and based on how much we are wearing Annabelle out playing, I don't foresee any issues sleeping on the only night she DOESN'T need to sleep like a log. lol
No appointments Tuesday. Wednesday we report at a satellite location for a sleep study.. and based on how much we are wearing Annabelle out playing, I don't foresee any issues sleeping on the only night she DOESN'T need to sleep like a log. lol
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