Brooke’s MRI went great yesterday. I found out last week during the phone call to pre-register her for the procedure, that I could actually ‘request’ the anesthesiologist of my choice to take care of Brooke. While it is not a guarantee, the request is usually honored providing the Dr you ask for is working that day. Sure enough, our favorite was written in her chart when we arrived. I realized as I drove down to the hospital that morning that I needed to be aware that this was going to be a slightly different situation from taking her into the normal operating room. It had been a while since her last MRI and I wasn’t sure if the set up would be such that I may legitimately not be able to stay with her until she was asleep. I determined not to make an issue out of it, if this turned out to be the case. While advocating for my child is of utmost importance to me, I also believe one of the keys to this is to remain on the right side of your health care professionals – especially if you’re going to be dealing with them a lot, and I knew if we had the Dr I had requested he would allow me to stay with her if he could. When anesthesia came to pick her up, he was the one to explain to the other nurses involved, that I would be staying with Brooke and that he had a way that worked well. I could hear them talking just outside the door and I thanked God for this man’s compassionate understanding of the situation. We walked down to Radiology and Brooke and I sat and watched as the nurses drew up the ‘la-la-land’ meds, and prepared the table for the procedure. When they were ready they called us over and the Dr pulled up a chair for us. Then he handed me the gas mask and said, “Here, you know what to do, we’ll just stand back so she can’t see us and stay out of her way”. However, true to my word, I had faithfully kept my mouth shut and not asked questions from the moment we had ever entered the Operating room in procedures past; I was there for Brooke and Brooke alone, as was never looking to acquire the art of gassing little children, so I gave him a look that said something along the lines of “umm, I’m not the one being paid to do this”, and then proceeded to try and ‘look’ like I knew what I was doing. I attempted to restrain Brooke’s thrashing body with my left arm, and hold the mask over her mouth and nose with my right. However, it seems that I was allowing gas to escape and the DR did step in to help me keep it firmly over Brooke with a comment that I had only signed pre-authorization for him to put one of us to sleep. Within a few more seconds Brooke was out and we got her positioned up on the table, and I headed back out to the waiting room. To be honest I’m not sure how I felt about all this – I had only ever intended to be present for Brooke to know that we weren’t leaving her with strangers to endure something scary and un-certain. I couldn’t change what was going to happen and I couldn’t make it less scary, but I could show her that I wasn’t going to leave her alone while she went through it – and here I was to accomplish that, and wound up playing the bad guy as well – but, I have had to play that role many times before, and she always forgives me, always forgets. Which I guess is better than her becoming more and more weary of other people? I’m not sure. I picked her up about two hours later, and everything had gone as well as it could have. She had a good rest of the day, eating, drinking and sleeping well. I couldn’t help but think what a stark contrast this was to the times when other Dr’s have had every reason under the sun why I couldn’t stay with her. Either it’s all bogus, or we just found ourselves under God’s smile of grace that morning.
On another note, I have to share how well Brooke’s eating has been going lately. It has been almost three weeks since her last EGD and we have not had one episode of blockage in the esophagus, throwing up, or choking. We have tried to be smart about what we feed her but we feel like we’ve also been a little bit adventurous. We are feeding Brooke things that we never dreamed she’d be eating so soon. For Justin and I, watching her eat is like witnessing a magic show, like the disappearing bunny trick – now you see it, now you don’t – except without the ‘reappearing act’ that we had grown so accustomed to before. We found out that before Brooke’s first EGD, her esophagus was 6mm in diameter – 6mm! That explains why a grain of rice was hazardous. Any attempt of un-blended, non-mush food resulted in throw up and/or choking, and here we are watching her eat things like macaroni and cheese, small pieces of soft fruits, pieces of pizza, pancakes, steamed veggies, etc. (Thanks to the effectiveness of the Imodium she’s now on, we’ve even been able to add small amounts of fruits, veggies and whole grains to her diet). She is also learning to co-operate with little things like taking a sip of water in between mouthfuls, which makes a big difference. It has been really exciting. While we are very aware that at some point she may begin have problems again, it will just be an indication that the stricture (scar tissue) has begun to shrink back, and it’s time for another EGD, which would just be to get her back to where she is now. But to be this far out from the last procedure and to still be having such good results is huge! I had had the misconception that the goal was to dilate the esophagus until it was ‘normal’ size’, but we learned in Cincinnati that Brooke’s esophagus will probably never be the size of ‘normal’. She will have to have her own ‘normal’ – the size which her esophagus tolerates being dilated to, and which also renders results. As we have also been told that further dilation beyond the current size of her esophagus now poses a significant risk of perforation, we have probably met her ‘normal’. This is a relief in and of itself. So all procedures from here on out would kind of just be ‘maintenance’. I’m not photographing meal time or trying to capture it on tape, but it is pretty exciting to watch her eat now. (Did I mention this was exciting?) We’re having fun with new foods and textures and Brooke is no longer wiping her hands together (her ‘sign’ that she is full and all done) as soon as she sees what’s for lunch. She had gotten to a point where she would rather not eat than endure applesauce for the umpteenth time. Now, she get’s a big smile on her face when her food is put in front of her and she even asks for more of some things (by touching her finger-tips together). Especially blueberries and cheese doodles.
